Kbanshee's Metropomonkeypurpleopolis

It's only been a couple days right?

2009-06-30T23:54:00.000-07:00

Well. Maybe more than a couple. I've been struggling. I still don't have the latest report from TCI. Our finances are finally too f*cked to go on so I can't go back to NY for checkups at TCI for the moment...we'll hopefully get things sorted out on that front soon [put all your mojo out there for my partner to get a rockin teaching job].

Still doing PT 2x a week, but I've been struggling. Can't stay awake. Lower back/coccyx/sacrum getting worse & worse - probably Adhesive Arachnoiditis spreading & spinal cord re-tethering. Fatigue when I'm awake. Headaches. Really tight neck/shoulder...probably means I'm looking at the possibility of needing to extend the fusion (occiput to c5 instead of occiput to c4). Can't get the myriad of hormonal disorders (Hashimoto's, Growth Hormone Deficiency, Adrenal Insufficiency, Hypothalamic Dysfunction, Panhypopituitarism, Empty Sella/partially flattened pituitary

2009 Year of the ?

2009-01-14T23:53:00.000-08:00

I'm still (struggling to) keep kicking. Not doing great. Not doing horrible. My spinal cord seems to be re-tethering already. A little frustrated with my doctors right now. I'm having a lot of myclonus along with other stuff. I went to post tonight because I keep thinking about not having updated here, but my brain is just not cooperating. I'll try and post more in the next couple of days.

Adhesive Arachnoiditis

2007-04-12T18:38:00.000-07:00

Adhesive Arachnoditis. Dang. I didn't realize when they found this during surgery in January that it was a big deal at all. I've been reading up & it actually kinda tossed me for a minute. For those of you that know me, not much about my health and having to adjust to it puts me seriously offbalance. I have, since that moment, recovered my sense of humor & not-too-flapable-ness for the most part.

So here's the skinny on it. Adhesive Arachnoiditis is the most severe type, it causes adhesions aka scar tissue to form, which in turn compresses nerve roots & impairs their blood supply, as well as impede the normal flow of CSF...that is what they found when they went into my back and cut a lot of the adhesions out between L3-L5. The problem, I'm finding out is that more adhesions can form and continue to destroy areas, and the Arachnoiditis also causes a lot of pain...which could be 1 explanation as to why I am having so much lower back pain & contribute to several other of my lower body symptoms historically. It is also an inflammatory disease...the arachnoid/subarachnoid area has inflammation going on after the several ways that the disease can start...there seems to be a large # of people with it that also have other inflammatory diseases or autoimmune diseases.

It is probably from the epidural that was done when I had the total hysterectomy in 94. It was in there a long time & shoved around a lot & they used it for anesthetic and pain medication. They call it 'chemically induced' when that is the cause. It probably wasn't helped & could have been worsened by the 2 lumbar punctures I had, but I don't think that was the main issue as I only had 2 & they were very recent...2004 & 2005.

Arachnoiditis symptoms can account for the pain in my lower back (tho' it may well be combined with other lower back issues like the LSTV & lumbarized sacral vertebrae), cause numbness/tingling/water & crawly feelings, sleep disturbance, weakness, muscle cramps/twitches/spasms, stiffness, fatigue, joint pain, balance difficulties, loss of mobility...among other things.

The really crappy things are that, since it is incurable & mainly treated with pain medication & physical therapy, I will most likely be on pain medication for the rest of my life and there is no guarantee that I will continue to be able to walk in the long term as the adhesions could regrow around the cauda equina nerve bundles in my lower back to my legs & cut off the communication. They don't really recommend surgery, tho' it probably wasn't a bad thing for them to remove the adhesions there since they had to go into my lower back anyway.

Another interesting thing is that many people with Arachnoiditis are diagnosed with Multiple Sclerosis or investigated for MS.

I'm sure I will pontificate about this more in the future. But there it is. My alien body isn't letting me off the hook.

Infection Intervention

2007-02-20T01:33:00.000-08:00

Mmm. Health needs on a holiday. Spent the day with the colds and flu set in the Emergency Room. WHY are there not regular urgent care places in the Bay Area? Argh. We usually go over to the ER in SF that is faster to get into than any of the East Bay ones that are only good if you are stabbed shot or having a heart attack. It was 1.5 hours in the waiting room and then we were in curtains for hours. Laying around...

So there is no 'aggressive action' in the ER. My back was looking a bit better today anywho, but don't wanna risk anything being able to migrate into my back further so ER it was. They did IV antibiotics (Ancef) and gave me a week worth of Bactrim & Keflex. Flora balance? Nope. None here in the near future.

Gonna see my primary doctor tomorrow. We'll see if she can't hook me up with a wound specialist.

That's what I know.

Doing better, but stress

2007-02-18T20:59:00.000-08:00

Ahhhhh. There is nothing as stressful as having things look a bit icky around the last of the scabs on the surgical incision & sending a pic of it to your neurosurgeon to make sure that it isn't anything serious and getting a message back from him say I should find an aggressive doctor to cut out the entire area and re-stitch it.

Eek. Well, I guess I know what I will be doing tomorrow. Probably better safe than sorry. Frightening none the less.

Otherwise I'm doing pretty well. Not instant, but I've started physical therapy and the pain is starting to lessen. I'm doing a little bit around the house, but still finding if I do something one day, the next day I'm really worn out.

I'll drop another note when I know what is goin on with the scar healing.

Healing at Home.

2007-02-07T18:06:00.000-08:00

Been home for...geez 26 dayz already. Initially pain pain pain was all I can remember. Up'd pain meds a bit w/ help of local neuro and then my brain kicked in...gimped up by the pain meds, but more able to function than before. We HAD to get a new bed. The 6 year old wavy/lumpy futon is not doin it. I have way too much pain at the top of the incision. It feels like something is wrong with the vertebrae there...it is realistically probably the hematoma thing. Just in the last couple of days it feels like it is absorbing. I got an MRI last Friday, so we'll see what New York has to say about it. Saw one of my Rheumatologists here today. She's just really kind of blown over by the whole thing and amazed about a) me having figured it out enough to find the right doctors & b) How much is able to be done that NONE of the doctors could figure out here in the Bay Area. Of course everyone is in a holding pattern on resolving any other issues until I'm fully recovered from surgery. I agree with that idea in general. I just want everything to go faster. It is kindof sinking in how much the epidural I had when I had a hysterectomy in 1994 probably had to do with my health situation worsening (part of the tethered cord issue and the level of harshitude on my lower limbs was due to arachnoiditis (scarring & adhesions) in my lower back that was squashing the cauda equina area and squishing/choking the nerves and making it so there was less than no room for proper communication between the ole brain and the nerves passing that info on to my lower half. I am really glad I did this surgery. I feel like I'm having the best chance of getting my health to the best point possible. I'm looking forward to starting physical therapy next week as well! Spending a lot of time by myself. To some extent I'm enjoying it, but it is lonely too. Eliot is so busy with school, it is more ridiculous than last semester even.

Out and Homeward. Word.

2007-01-18T18:44:00.000-08:00

So we are out of the hospital. Eliot packs his stuff out of the Variety House & then comes and hauls my stuff down to the car...flowers and all. Then comes back for me. The staff hassles about him pushing me down to the car in my wheelchair vs the hospital staff pushing me down in their wheelchair. What the....We prevail. Down the street to the one drugstore that supposedly has everything we need in stock. Mmm. We park and Eliot puts my chair together and I gingerly climb into it. Lack of pain control being much more harsh on the outside where moving is required. Every crack in the sidewalk makes me scream. Horrid for Eliot to be pushing me. To make it worse we can't find the place and I have to pee NOW! Finally we go BACK down the block AGAIN...we'd turned around just short of it. We get in and pee first. Then we place the drug-take-out order. No can do on one of them. Too soon. Well, yeah and of course I didn't travel with my ENTIRE prescription of it cuz they said the hospital had it and they didn't so I have barely enough. They fill everything else. Back in the car and off to Montclair where Neil & family are doing much healthier. We stumble in. Lucy's a bit confused about the being gentle part initially but all is ok. I curl up in bed and sleep. We stay at their house till the flight on Friday (12th). We go to the airport...car rental return...get them to drop us off with our rental car at the curb check. Spencer and Lea meet us at the airport and we sit and visit till it is time for us to go through the security point. We have been moved up to first class. Total life saver with my back in the state it is in. It is still so so so soo painful. The flight attendants and Eliot help tuck pillows around my back to have me not leaning against the incision. The flight is still hella hard to get thru and the guy behind me slammed into the seat to get things started right. It made me hollar! Oww. Thurston is there when we get to SF and we get home in a good hurry.

Pt. 3 In the Hospital

2007-01-16T14:54:00.000-08:00

The days in the hospital were a blur. So much pain pain pain. They never got it under control & several times they didn't get meds to me on time (even when requested) so I had to play catch up. It was really hard to even roll side to side.

The food was a nightmare. So hard to deal with. The nutritionist was good. She would come up and help me figure out what I could eat. We would spend time going through the menu and set up the best possibilities. Then the food would come up. Random. The menu would be on it. But the food would be whatever. One day it was chicken [!!!] with my menu on it saying lacto/ovo vegetarian & no substitutions allowed. Another day it was an empty plate. Eliot did his best to supplement.

The fragrance thing was a NIGHTMARE!!! On the door there were 2 signs. One said in big letters NO PERFUME or SCENTS or SOLVENTS. SEVERE ASTHMA. A secondary one was more complex below it...I'll put up an image of it later. My fave line I came up with was "Patient is not a Fragrance Crash Test Dummy. Don't just 'come in and see if it affects her'!"

I had an amazing amount of visitors which was really sweet. They of course got to experience some of the stress. Fly came out on the LIRR to visit. My friend Tim came from Boston to visit. Rhonda & her girlfriend Kathleen were in town from LA and came out to visit. It was awesome to have the distraction of people coming to hang out.

Mom & Dad sent great flowers & Rhonda & Kathleen brought a gorgeous bromeliad and a cool monster hand puppet. I definitely prefer not being in ICU cuz no one can get to you when you are in ICU.

A couple of days I had a roommate who was another Chiari patient Theresa. That was nice too. Having people around that understand what you are going thru is always a good break. Other chiari peops came to visit her so we all had things to talk about.

Mostly I was on the nod. One of the medications they had me on was a liquid morphine. It wasn't doing it at the every 3 hour dose. I ended up having to get a morphine injection for breakthrough and I was using it every time I could and still only getting down to about a 6. They said I had to stop the injection to get out of the hospital and basically insisted I just stop using it even though I wasn't having good pain control cuz they were tired of trying to deal with the fragrance thing. They wouldn't have to 'get tired of it' if they were like any other regular hospital and had a NO FRAGRANCE rule. It shocks me that there are still any hospitals left that allow staff to wear any fragrance AND on top of it provide fragranced hand sanitizer and soap. Just crazy.

And being a hospital, I of course got thrush & a UTI. mmmm. So rounds of nystatin & cipro were really great. Finally finished the nystatin today.

So finally on Monday, 6 days after I was checked in, even though I'd not really seen the physical therapist to get a handle on how to deal with myself out of the hospital and without really having my pain under control and without really having had a functioning bowel happening, they signed me out of the hospital.

Predictably the first 24hours were hell, but in general I was happy to be out.

Pt. 2 Surgery

2007-01-12T05:26:00.000-08:00

On the 3rd. Time for surgery. It was around noon 30 that we needed to be there which was nice and civilized. We checked out o hotel and stopped at Variety house to get Eliot keys. Thirsty thirsty. Already 12 hours without anything by mouth. Spent 45 minutes in waiting room. Then they checked us in & I did the whole strip & put on the green gown thing. Then you wait and wait. Different doctors, nurses, PAs, anesthesiologists & Dr Remy came in over the next couple of hours to make sure everything was set and then they came for me. Set with my inhaler and multiple green robes, down the hall we went on the surgical bed, leaving Eliot behind as we passed the surgical waiting room. Always the hard place to kiss him goodbye.

Once in the OR, they discussed the issues for getting me under (including awake intubation) and the final surgical plan...which was to include botox around the surgical site to lower how much it would spasm. It looked straight forward on paper, so I signed off and we were off to the intubation. If you want to read about the intubation, click the link...it is graphic so I am not assuming that people want to read it.

The last thing I remember after that whole mess is them saying that they had confirmed it was located correctly.

Woke up in post op, relieved to have only a faint memory of them taking the intubation out and then another faint memory of them doing some quick scrubbing to get the blood off my face before Eliot came in. I could breathe fine. The anesthetic combo this time worked! What a relief considering the long intubation from the last surgery. And I wasn't too cold either.

It took forever to get a room...so I spent the better part of a day in recovery. When they finally got a room for me it was a double. The fragrance issues were going to be complicated.

The neurosurgeons barely spoke with Eliot post surgery as it went long and it was almost 8-8.30 pm when they told him they were done. Dr B swung thru the surgical waiting room on his way out & said it was a bad tethered cord. 8 on a scale of 1-10 and that someone would come to talk to Eliot. No one ever did.

I have the surgical report now. The surgery was based on the diagnosis of: Tethered Cord Syndrome in association with Noonan's syndrome, Ehler's-Danlos Syndrome (Beighton Score 8 with spontaneous dislocations of both hips and both shoulders) Chiari I Malformation with minimal tonsillar herniation; status post combined posterior fossa decompression and craniocervical fusion in extraction from the occiput to C4. They also list there being a lot of vascularized (arachnoidal) adhesions and that it was consistent with arachnoiditis.

They started out by puting me face down with bolsters under my shoulders & hips (no head support, which I certainly felt afterwards...I'm lobbying them to find a way to support people's heads!)...cleaning all around where they would make the roughly 6 inch incision. Not sure why, but they used iodine which I am allergic to... so I have a lot of blisters, rash & hives, still waiting to hear from them why they used the iodine. They did an xray to make sure of the right spot and marked it on my skin with indelible ink.

They performed the spinal cord untethering under color Doppler ultrasonography and fluoroscopic guidance (lots of good guidance tools to see what they needed to). And to get in to the area they needed to fix they did a laminectomy of L4 and a laminotomy of L3 & L5. Then they mapped everything...the arachnoid adhesions to cauda equina roots, and they were taut & packed into 2 tight lateral bundles. There were no fishtail movements and there was no measurable cerebrospinal fluid flow. They opened up the dura (basically a closed bag that surrounds the spinal cord & brain)...& so all the cerebrospinal fluid drains out (which is why I had to lay flat for a day to allow the CSF to regenerate after surgery and they put a lot of IV liquids in me later to assist with the regeneration). They removed all of the vascularized (abnormal or excessive formation of blood vessels) adhesions (the abnormal union of separate tissue surfaces by new fibrous tissue resulting from an inflammatory process) that were binding the various roots of the cauda equina & other areas...and sent some specimens to pathology.

When they cut the filum terminale, as they put it, the cut ends retracted briskly above and below the limits of the dural opening...about 5.5cm. They closed everything up with sutures, a paraspinal muscle graft & created an extradural blood patch.

When they did the final imaging, it revealed the nerve roots of the cauda equina to be greatly relaxed and evenly spaced throughout the lumbar theca. Good fishtail movements of the cauda equina elements were noted. The cut ends of the filum terminale were separated by a distance of 5.5cm There was 2.5-3cm/sec cerebrospinal fluid flow in the dorsal and ventral subarachnoid spaces, and between individual roots of the cauda equina. Cerebrospinal fluid flow was now moving well.

Beyond the excruciating pain of getting through the first few days, there was an extra pain at the top of my incision. They finally did an MRI & found there to be a hematoma. They say it will re-absorb of its own accord.

Pt 1: Kriss & the Presurgical Testing

2007-01-11T14:26:00.000-08:00

We're crouching at Neil Pamela & Lucy's rying to get things basically under control prior to flying home (to Oakland from here in NY/NJ) tomorrow. I'm not looking forward to the plane ride as I am in a lot of pain still. The pain meds are doing ok except for this one area on my mid back that is just being a big pain that won't be a team player. I am asl really struggling to stay awake and alert. I don't know what the problem is, but I would assume one of the meds is interacting or just being at a level that doesn't work for me. Sent a note to the docs today.

So. The surgery from my POV. The day prior to surgery we did lots of tests. An MRI I've never had done) which did half of the MRI sitting up and then half laying down (well, it is quite a bit further than flat...more like 110 or 120 degrees rotation from sitting up. Half my weight hanging from my knees, the other half resting on my head. Not good very bad ow. Then a quick Echocardiogram. Drove to Bruce's for a quickie lunch & then to the hospital for the presurgical checkin/testing & xrays.

The paperwork is ridiculous, but we got the same nurse as the last time & she was really great. Got us thru all the rigamoro & accompanied us down to xray to make sure they took good care of us. The xray was so odd. Wedged me up high enough to have me sitting next to the xray unit on the wall and took that (left & facing forward & then a whole set of weird poses on the table. Finally about 7.30 or 8 we escaped for a last night the 2 of us at a hotel.

End o Pt 1.

Punkin Chunkin "RANT ON"

2007-01-10T19:19:00.000-08:00

Well. They got bored with me and chucked me out the hospital doors yesterday evening. By the time we got to a place to get prescriptions and drove to Montclair it was about 10pm and I was in EXCRUCIATING pain (also a 10). Poor Eliot. I was all but screaming a good part of the way to Montclair. Every bump or side to side shift was more than I could take. Didn't help that the lumbar support in the crappy rental car was not movable. Did I mention OWWW?!

They said to leave the hospital I needed to 1) poo, 2) not have a fever for 24 hours, 3) be able to get up and walk around, 4) be managed painwise by non-iv narcotics...and be in the 4-5 range pain scale wise. Guess how many I had accomplished by the time they cut me loose? 0. None. They don't want you in the hospital and with the fragrance allergies, they doubly didn't like having to deal with me, not to mention that I was getting more and more disbelieving of what they were trying to feed me. One day I lifted the blue plastic plate cover to find... AN EMPTY PLATE! Another day a big leg of chicken (with the menu laying on top of it that said LACTO OVO VEGETARIAN, SPECIAL DIET, NO SUBSTITUTIONS! So of course I hadn't hit #1 because I'd not had enough to eat. I have a fever b/c I have thrush & a UTI. Just too much. Many of the staff were nice and tried really hard. Especially the night nurse I had on the 2nd & 3rd nights. She was SO great. And several of my day nurses were very nice too. The only staff that seemed to truly understand the fragrance thing was the maintenance/cleaning staff. But there was this bizarre thing that the upper staff kept doing which was to trot people into my room and stick them close to me and say 'how about him/her can you smell them?'

I am NOT the fragrance crash test dummy. Would you hand someone allergic to latex a pair of gloves and say, 'put these on so I can see if they are latex'? Would you blow peanut dust in the face of someone allergic to peanuts and ask if that was ok afterwards?

So none of the 4 were met, but they didn't want to have to continue to 'have the hassle' of the fragrance issue, so they put on the full court press and coerced me to accept a discharge. I figure at the end of the day I will get better sooner being out of the hospital than in. But the struggle of doing ANYTHING including sit up or lay down the first couple of days is daunting.

Now we're at Neil & Pamela's & I'm up and down every 3 hours to have pain meds. Sleepus Interruptus. Painus Increasus to acquire Painus Decreasus.

Ok. Enough ranting. Check the next one for more factually based hoo haa and what not.

6 days later

2007-01-09T22:10:00.000-08:00

Kriss has been released from the hospital.

We are out in Montclair staying with our friends, Neil, Pam and Lucy.

There's a lot more to say, but I'm too tired to craft anything worth reading.

We are both relieved to not be at the hospital now, but tired, distressed about the experience, and hoping that things will improve.

Its nice to be able to sit down and actually connect using a computer. New Jersey is civilized that way.

Eliot

kriss moved to room

2007-01-05T12:24:00.000-08:00

Kriss is now in Cohen 470

We expect her to be in the hospital thru the weekend.

Kriss in Recovery

2007-01-04T11:07:00.000-08:00

Hi All,

Sorry for the delay,

Kriss is in recovery until at least 3pm today.
She is doing well, and surgery went smoothly.

Her room isn't ready yet, but as soon as I have that info I'll post.

No word yet on when Kriss will be released.

No stay in the ICU this time!

Dr. B said that on a scale of 1-10, Kriss' cord tethering rated an 8, a "big tether".

She came out from anesthesia smoothly, and was aware and alert last night, and doing well so far today.

I have no internet access at the place I am staying and will only be able to check phone or email intermittetly. If you need to get me, please leave message with phone number on my cell and I'll return calls as soon as I can...

all the best to all...

Eliot

Surgery for New Years

2007-01-03T07:34:00.000-08:00

Morning of surgery. We're on our way out the door. Yesterday was HORRIBLE. Tests and tests and pain caused by tests and etc. A bad dress rehearsal makes for a great performance, so today should be stellar. Thanks to everyone for all their good wishes & we'll see you on the other side!
Love,
Kriss

Tethered Cord Surgery in January

2006-11-08T01:09:00.000-08:00

Finally gathering my thoughts and have finished up on several rounds of conversations with the TCI docs and got down to the decisions and all of that. So, finally here is the deal on my medical crapola & recent travels to NY...

Things have been getting worse since about 5 months post surgery. Some new symptoms, some returning symptoms.
I finally got things sorted to return to NY for an appt with the doctors & more tests and all of that for the end of October. Since El's in grad school right now, he couldn't go with so that made the whole thing a lot more complicated. I decided to drive so that I would have my power wheelchair and have my own van since it allows me to be independent. It was an insanely difficult thing to drive that far, even with plenty of time allotted. I got home tonight though and survived it.

My parents live in Iowa and so I stopped there and picked up my mom, who then went with me to NY & split the driving and all of that. Our plan had been to head back to the midwest on Thursday AM since my tests and appointment were on Wednesday, but there are always complications. We ended up staying through mid-day on Friday so they could run a few extra tests. They had already done MRIs of my brain, cspine, lumbar spine & Xrays of my lumbar spine on Wednesday prior to my appointment. Then during the appointment Dr Kula went over the main issues that he could see on the film...my spinal cord ends lower than it should, I have an extra vertebrae between my lumbar and sacral spine, there is a sacral vertebrae that is lumbarized, there are closure abnormalities, segmentation abnormalities...all of which point to tethered cord. Also, my cerebellum is slumping/being pulled down.

Then Dr Kula does the physical exam, which included otherwise innocuous things like walking on my heels (way more symptoms/pain/issues/can barely stay upright doing it) and toes (less/relief), extending my spine by pulling down on my legs, examining my eyes, reflexes, etc etc and asking a gajillion questions about current symptoms. He went and talked to one of my neurosurgeons (Dr B) and came back to see if we could delay our trip back. He really wanted us to be open ended and consider doing the 2 other tests as soon as they could get me in and then stay and do surgery once they finished the other couple of tests to further confirm the situation. I (again!) didn't want to be stuck in NY post-surgery with my van. So I said we'd stay to do the testing if we could get in on Thurs/Friday and go from there.

We left TCI (The Chiari Institute) at about 7pm or so after the Doctor appointments. I was so exhausted I could barely get myself into bed. So on Thursday I had another set of MRIs where they MRI'd my lumbar area while laying on my back and stomach. Then on Friday they called at about 8am and said they got me in to the urodynamics lab at noon. Mom & I packed out of the hotel, went to the hospital and checked in for outpatient testing. Urodynamics is very unpleasant. It's all tubes goin where the sun don't shine and liquids going the wrong direction into the bladder and can you hold it and how much and how well and how well you can empty it and all o that. Bleh. My bladder and urethra were still cramping a week later. The extra MRI didn't shed any extra light on the situation, but that wasn't overly surprising. The urodynamics however did document that I have a neurogenic bladder (not fully emptying, urge/continued urge after emptying, loss of control, etc) and so that supports fully the findings clinically that I have a tethered cord.

So I get an email from Dr B to follow up on scheduling surgery.

The expectation is that the tethered cord surgery will relieve/get rid of
- the lower back pain/lumbar/sacral pain
- tenderness/feeling of bruising over spine
- numbness & burning in legs and bottom of feet
- weakness/balance/coordination/stumbling with my legs
- foot drop/foot flipping over/dragging
- bladder/urination issues
- bowel issues
- headaches
- possibly other stuff

Basically all the stuff that started happening or came back a couple of months after the fusion surgery. As Dr B put it: the Tethered Spinal Cord & the Cervical fusion on playing tug of war with my spinal cord. They've found it in other patients with EDS - Ehlers-Danlos Syndrome (the connective tissue/hypermobility disorder). They are starting to do the tethered cord surgery before doing the fusion with people that have symptoms similar to mine.

This is an easy surgery for a neurosurgeon to do and there isn't going to be a TON of experience ever cuz there are only a few thousand people with this combination of medical issues in the world (if that many). They've done 150 of these surgeries thus far in 2006. I totally trust my neurosurgeons there in NY & wouldn't trust anyone else to do it because they have so much more of an understanding of my health issues. So in December/January it will be back to NY...

I am scheduled for surgery January 3. I need to do pre-surgical testing and all of that before then. So we'll probably be in NY till January 12 or so. The surgery is 1.5 hours and is very straight foward. The main expected side effect is lumbar spasm and (with the EDS) some possible wound healing issues. The later being the main variable for being released to fly home. I'll be in the hospital between 2 and 4 days and they'll want me to wait a few days to travel once I'm out.

I didn't manage to do much on the road as I mostly was driving or sleeping. (IE I was so exhausted when we got back to Iowa that I slept all night and then got up for 2 hours and went back to bed, slept 6 more hours and got up for 3 hours and went back to bed till 10.30am on Monday.) I was too tired to travel so I laid low and then got up today and drove to KC. El ended up flying into Denver to help me drive the rest of the way home. Happily though, I am finally in my own bed.

The NO FRIENDS rule @ venues

2006-07-04T16:28:00.000-07:00

I am really wound up about this one right now. My aunt (who is in her mid 60s, has several health problems and multiple joint replacements) & my 2 female cousins (3 out of 25 of us are female!) and I are going to do an aunt & the nieces kind of getaway in San Francisco. Getting a hotel suite and going around and doing theater, museums, etc.

I, since I live here, was putting together the hotel possibilities. I literally spent hours calling hotels (including ones listed on Access Northern California's website) trying to find an accessible suite. I was shocked at how bad it was. There were NO accessible suites in ANY hotel in the Union Square area. When I questioned managers or however high up I could get as to why there weren't any suites that are accessible, they were like...we're required to have a handicapped room. We make handicapped rooms available. Use that. My explanations of needing a suite was met with everything from rudeness to disinterest. When I asked if they don't have accessible suites because they assume people with disabilities don't have any friends...they basically said yes in several instances. They make rooms for 'a handicapped person and their attendant'. (Which of course is my other hotel pet peeve. When El and I travel we want an accessible room with a king bed and usually they have rooms with twins or doubles, not kings. Many places seem to shudder a bit when I push about the fact that we sleep TOGETHER...like they don't want to think about a gimp having a girlfriend/boyfriend/lover/spouse/whatever).

In general I also find this in theaters, music venues & movie theaters, basically anywhere that there is some type of seating.

You can go with one person, which the venue usually identifies as 'an attendant'. You can't have a GROUP of people. You can't hang with 4 or 5 friends. At some venues they've given a 'special' tag to me and my partner & threatened to throw us out when we tried to switch out my partners sticker with other friends so they can at least come hang with me one at a time (makes me feel like I'm in ICU or something).

These venues see no issue with everyone else having to be separated from me. WTF makes people think we don't have friends?

I'm curious...what have you found in this arena?

a year gone by - 1 year follow up at TCI

2006-07-04T16:24:00.000-07:00

It is almost 2 months since I went to New York for my 1 year follow up. It has super slipped by in a crazy haze of coping. El cut 'bout 1/2way through his middle right finger and had to have surgery and I've had to manage to feed us at the very least and really that is about all I've managed to do. And even with that, some nights have been cereal for dinner. I'm so exhausted.

First off I'll say, I've been having valsalva headaches again since September and some other symptoms. Difficulty with urgency & bladder emptying...and recently some trouble with balance and walking and weakness in my legs and feet...generally not going in the direction I'm aiming...hitting doorways and the like.

When I went back to NY to TCI for my appointment it was kind of odd at first. They had me see another doctor in the building that from what I could read up on about him was a movement disorders doctor. Seemed plausible for the symptoms I still have hassling me. But he doesn't really do movement disorders stuff anymore. He pretty much just implants devices like the neurostimulators. I'm sure they are good devices and all, but they are not really great around other electronics and computers...you have to turn them off...and where am I most of the day?. And there was just such a sales pitch feeling to it. I'd be interested in hearing how you are doing with it if you have a neurostim.

So, then there was the MRI. They'd said I was going to get a new head, cervical & lumbar spine MRI...but they only did head and cervical. When I saw Dr K at TCI it was very enlightening, but could have been less intense. He spent a lot of time looking at my old films while I hung out and squinted at the 2 MRI prints up on the wall noting that things didn't look, well, quite right. Then he had me walk up and down the hall a little ways. First on my heels, then on my toes. While he held me up so I didn't fall down. Life sucks walking on heels, there is some relief of that sucking on my toes. He does the usual neuro poking prodding and (with me anyway) requisite smacking my knees, ankles and elbows with the reflex hammer until they are satisfied that they did their best to get a reflex outta me.

So a long appointment slightly shorter, the upshot is that they he thinks I have a tethered cord. When they lifted my head up 2 inches and fixed it in place, it stretched my spinal cord out, instead of just lifting it up along with the rest of things. It does make sense that my sacral-illiac joint is subluxing hourly since surgery. They don't know if it was already tethered and they missed it, or if it got tethered when they lifted my head up. Saddly though, my brain is pulled down further than before surgery. Spinal cord trumps brain on the strength factor. So I'm on diamox to lower my spinal fluid pressure. I go back in about 2-4 months from now and they'll do a bunch more tests. Detailed scans of my lower back, probably another lumbar puncture to check my spinal fluid pressure etc. Once we know if my spinal fluid pressure is ok or too high and see what the diamox has helped and I've thought about it a bit I guess we'll decide if I need to have surgery to release that tethered cord (if it is for sure what the problem is).

The exam fucked me up so bad that I mostly slept and laid around until we flew back to Oakland. It sucked cuz we missed seeing a lot of people. So if I didn't see you in NY, I'm sorry.

So the bad news is that there is something else still wrong and while a lot of things are better since surgery, there is some stuff that is the same or worse. The good news is that the symptoms that I'm still having are attributable to something that can be seen and looked at and ...technically something can be done about. So there we are.

How do I go?

2006-03-02T23:41:00.000-08:00

In a word, slowly. Everyone else says I'm continuing to improve, but for me it is such a glacial pace that includes random setbacks in how I'm feeling. I'm having a LOT of headaches. Sadly that probably means my spinal fluid pressure is high. I will find out more about that hopefully when I go to New York in May for my 1 year checkup (!!!) Can't believe it is already coming up on a year. I'm super happy I did it. So many symptoms are gone (and still gone). So many are minimized. I'm having more sensory feelings...my thumbs have been burning along with other phantom bits...just something to add to the numbness in the sides of the arms & legs that barely show up on an EMG/NCS but render my arms and legs with almost no feeling on the outsides. And the pain in my neck & back of head is really high again. The muscles around the surgical site feel hard as a rock. I'm suspecting I'm no longer reacting to the flexeril. The pain clinic has been refusing for months to do trigger point injections that were ordered by TCI. I've been doing research and have set up to try acupuncture on the trigger points. Now they say they are ready to do trigger point injections. Feck. Well, I'm going to do acupuncture first now that I've gotten that under way. I've waited 4 months for them to decide they would do trigger point injections...what is one more month.

I've had to change from Kadian to MSContin cuz I can't afford the Kadian under the new Part D insurance HELL. They insist that they are exactly the same thing, but I'm feeling very different on them. With the MScontin I am feeling more like moving=pain and having more spasms & having a harder time with absorbing things I see or hear...not retaining things. Anyone have experience with changing laterally between meds?

Well, aren't I cranky today. Sorry. I've had a headache for 4 days straight and 7 out of the last 9 days. All very valsalva type headaches, but they don't go away. They are just there and get worse when I do any 'maneuvers'. I have a lot less tolerance for headaches after not having any for several months.

I should be going back to 2+ physical therapy a week next week. We were rationing while figuring out what the deal is with medicare and physical therapy this year and it basically is down to use up what you get and then appeal, so no point in rationing. My progress goes down a lot with less physical therapy.

I'm learning a lot about managing the Ehlers-Danlos though. I stumbled into an amazing physical therapist in San Francisco...Healthwell Physical Therapy...where the main therapist has a major focus on hypermobility and one of the other therapists actually had surgery for a Chiari Malformation. I've been going there since July (05) and feel like a learn something and make progress every appointment.

Physical therapy totally got my headache under control. Yea. She says that my spinal fluid rhythm gets totally out of whack. With cranio sacral therapy she basically stills my spinal fluid and then restarts the rhythm. Much better. I can't remember if I wrote before about cranio sacral therapy, but I was told after surgery I shouldn't do cranio sacral and I went along with it cuz the craniosacral therapist I had been seeing was pretty crappy and she was doing a lot of stuff right where the metal arms were going to go. But there is a lot more to cranio sacral therapy and it doesn't have to be based on the back of the head. It is helping me a lot at this point.

Let me close this rambling post with the fact that I am REALLY happy that I had surgery. For the frustrations I'm having (which are mostly because I am so much better) I am a lot better than I was a year ago!

6 month checkup

2005-11-19T19:46:00.000-08:00

So we went to New York for the 6 month follow up. Exhausting as anything is. We flew JetBlue to JFK. Direct flight was nice. Enterprise Rent-a-Car not having a hand control vehicle was not. The Enterprise trauma was long and boring, I'll limit the retelling to the fact that it took them 4 cars over 3 days to sort things out properly.

Had a new MRI at MDI on the 3rd and then saw the new neuro @ TCI on Friday and saw Dr. Bolognese. Got to see Lisa & Theresa and a few other people and talked on the phone to Denise when she called Dr. B during my appointment. Everyone is really happy about my progress.

The general attitude is that I hit the lottery as far as results go. Best possible and then some. I am trying to just celebrate that. I am happy about it really. Can't help but be frustrated about the continuing symptoms tho.

But back to the appointment. I'm going to have a few more tests and there are some things still going on, but they are really happy with how the surgery went and how I have healed up from it. My neck is still in spasm and they're having me up the Flexeril, which the pain clinic took me off. Pituitary gland hasn't gone back to normal shape, but won't worry about that for another 6 months. At that point if I'm still having headaches and nausea we'll do another CSF compliance test and take steps if necessary. They want me to continue following the Infectious Disease path, seeing if it is the cause of some of my symptoms.

Their initial presentation of the connection of EDS (Ehlers-Danlos Syndrome) and Chiari Malformation is available on the TCI site now.

I got to meet Eliza finally, which was cool. We went to dinner in the lower east side and got to catch up a bit in person. It was really fab to get to meet her!

Our docs are in heavy rotation on the Discovery Health Channel's 'Mystery Diagnosis' talking about Chiari Malformations, Ehlers-Danlos Syndrome and the like.

Good grief...

2005-10-23T17:12:00.000-07:00

I can't seem to keep on top of myself. I've been so headachey and nauseated the whole past week. I've managed to basically eat some rice or applesauce or vegetable broth every day and drink some tea. Then today I wake up and I feel fine. I started sleeping with a soft collar on. I don't know if that is helping, but it seems to. I've started trying to curl up in my sleep which includes trying to curl my head forward/down. I think that was a huge part of the ouch. I'm being so pillow specific, I'm afraid we're going to have to drag one with us to NY. I'm going to TCI again the 1st week of November for my 6 month follow up. I can't believe it is 6 months already. Wow. I cut and colored my hair again for the first time. (I don't have any hair over the scar area, so I was only coloring the half mohawk on top of my head.) I felt better emotionally. Hair is such a funny thing. I'm doing a presentation about my artwork to a panel from the Alameda County Art Commission and the Juvenile Detention Center on Monday. Oh. That's tomorrow. I better go work on it and write more here later.

Surviving...but Ow!

2005-08-27T00:42:00.000-07:00

I'm almost off the dilaudid. That rocks. Realizing that my pain management was still pretty dependent on it though. I feel like there are holes in the Kadian treatment. And of course am not at home. My partner has a solo art show opening in Kansas City (secret center of the art universe) on the 2nd. We are driving there. I'm slowing things down. We usually are in Ft Collins by night 2 and we are outside of Rawlins, WY. I hate hate hate wearing the aspen collar for 10+ hours a day. Other than that I'm hanging in there. I was told by many people that they didn't drive after surgery, and that part I am not having any trouble with. I drove 4 hours today. It doesn't seem to be any more tiring to drive or be a passenger when it is all interstate driving. We are having to hit hotels instead of car camping. I just can't figure out how to curl up in the van yet. Fortunately we built in an extra drive day not knowing how I would do. Gas is so expensive that we are going to be staying in the midwest for the month the show is up. Makes for a long time on the road.

If any of you are in KC area you should come to the opening on Sept 2 (http://www.eliotkdaughtry.com/robotcity/).

Hole in the info

2005-08-17T00:54:00.000-07:00

So obviously...looking at the gapping hole in the space between the Cervical Xray post and the waking up post. That the methadone was still WAY sucking and I moved to taking Kadian, which helped quite a bit. None the less there was just a whole lot going on in my body...cuz I don't sleep 20 hours a day naturally. We'll see tomorrow who I'm going to be seeing at the pain clinic.

Waking up

2005-08-17T00:44:00.000-07:00

I woke up on Friday. I think I literally had been sleeping almost 20 hours a day. I figure it was the fab combo of my system starting to kick the anesthesia out, withdrawal from some hard ass drugs, and just needing to sleep through some of the healing. So I'm down to about 10mg/day of Dilaudid & on Kadian...which doesn't seem too bad. Amazing how long the pain lasts though. I quit the clonidine which they give you to help with the withdrawal. I think that helped some. I'm taking as little flexeril as possible now too...usually about 1 a day. I don't really have much to say as after a couple of truly crappy weeks I am just starting to be up and around. Things are going well at this point I think. I'm making slow progress on the physical front, but it is progress and the docs said to plan for a year of recovery, so...I think I'm on schedule. It is really nice to feel half way human.

Oh, I do have something. I'm driving. I asked quite a few people who had more or less the same surgery how they felt about driving after surgery. Almost everyone said eek eek bad no good almost never not like-y, etc. I have to say that I am having a fine time driving. I have to turn at the shoulders or waist to see the right side mirror, but the rear view and left side are fine just using my eyes (switching from glasses to contacts was key though). I'm of course wearing a cervical collar. I had someone with me the first several times I drove to be a spotter of sorts...basically to call me out if I wasn't seeing things or was about to do something horrible. Nothin'. So there you go. If any of you are about to get yourself wrapped up in this sort of surgery, here's one vote for driving being ok afterward. My suspicion is that it depends on your comfort with driving pre-surgery. I LOVE to drive. I HATE to be a passenger. Surgery has taught me some tolerance for being a passenger, but hasn't dampened my love for driving. I'm driving myself to physical therapy and to doctors appointments. I'm running a couple of errands here and there. It kicks my ass and I have to come home and nap, but...progress none the less.

Speaking of progress. I actually went out to visit some friends the other night. Another thing that kicked my ass, but we parked about half a block from our friend's house...I walked in (did I mention that I walked in!) I can make it about half a block and that's pretty much it...we hung out for a couple of hours and then I felt like a big ole 2 year old. I was just done. Needed to go home right then. Ah well. More napping for me.

Cervical Xrays at (roughly) 3 month mark

2005-07-30T03:18:00.000-07:00

So I got my cervical spine xrays done yesterday at the same time I was getting a chest xray and blood tests.
You can see them (hot off the press) here:

http://killerbanshee.com/family/medical/cervicalxrays.html

It is so, umm...real to see it in black and white like that. It was pretty amazing to see.
Funny that one can post their xrays before they even get to the doctor in some instances these days.

So I was on a crazy round to all the doctors over the last few days cuz I was feeling like complete crap. I was sure it was due to the methadone and me having a bad reaction to it. Physical therapy people and my primary were worried it could be a UTI or the flu that is going around, so they wanted to check. I peed in a cup. Got a CBC panel & a chest xray. All clear. I went to the Pain Clinic. My doctor was out of town. Thank goodness. I feel like we speak to completely different languages. Eliot and I both ask him to re-explain things when we're in the office and leave looking at eachother with big questionmarks over our heads. I don't know what it is. Makes me crazy. Like he said he'd give me a prescription for clonidine patches. I asked what are they for? He said to take with the methadone to offset the effects. I asked if it was really necessary, what would it specifically help? I didn't get a clear answer. I asked if it was available in pills because I tend to have scars from adhesives left on more than a day or so. He said ok. I should have checked the prescription, I know. Eliot pages me from the pharmacy and says it is for patches. Ack. So I didn't use them and left a message for my doctor about it. Didn't hear back. So back to the fact that we were at the pain clinic and he wasn't. I explained to the doctor I was seeing instead what all I was taking. I told him my symptoms...difficulty breathing, restlessness, weird constipation/diarrhea combo, drowsiness, decreased appetite, dry mouth, weakness, profuse sweating, muscle spasms, tremors, restless sleep, twitching, back and leg pain, spiking fevers, very fatigued, difficulty urinating, joint pain in all joints...he said it was for sure due to withdrawal from dilaudid. I asked if it was possibly due to the methadone. He said that wouldn't be it because I was taking clonidine for that. I said that I wasn't and that I had left a messasge for my doctor about that. He got all wound up and went and got the head doctor of the clinic. They talked me through what was going on, adjusted my dosages with the methadone and actually got me the prescription for clonidine in pills (took 3 times explaining to them that every medical adhesive I've had on my person for more than 2 days has left a scar). We went home and got the new prescriptions. They set a time for me to come in on Monday. What a difference between this treatment and the odd behavior of the person I regularly see! Any suggestions on how to change doctors within a group?

Amazing how much better I felt this morning. Still not amazing, but as good as I had been feeling before starting the decrease of the dilaudid/addition of methadone. And for those of you out there that have had these surgeries, how quickly did you come off narcotics all together? Did you change from a short to long acting one in the process? They are telling me that I might be on pain killers for a few more months, I didn't think I'd be on them that long, but I'm not sure what is usual.

Well, I better get some shut eye. Enjoy the pix.

Hmmm...MacJournal has an blogger post feature

2005-07-28T00:45:00.000-07:00

Just noticed it in the custom menus, so we'll try it.

I feel like crap. Been feeling less than stellar for a few weeks as I've noted. Still waiting for test results on the main feeling like crud theory.

Now, on top of it I'm feeling even more crappy. No appetite. Fluish. Loss of appetite. Tired. Sleepy. Exhausted. Dry dry dry mouth & throat. Thirsty all the time. Super fatigued. Sweating buckets. Enough to have to change my clothes multiple times a day. I'm popping more fevers. Many of these are lasting longer than the usual ones which go up to 101.9 or so. These are only going to 99.x and last a couple of hours and then I go back down to something around 97.7. I'm having urgency about needing to pee. Then it is difficult to pee. (Did a UTI pee test just in case, nope.) I'm still having a systemic behavior that is like constipation, but what is coming out is more like diarrhea. The joint pain is terrible...hips, knees and ankles worst, then elbows, shoulders & wrists. I'm achy all over. I'm feeling much cloudier, like I can't think. Bleh. I'm going to see the pain clinic docs tomorrow. I've just stopped a moment to prepare myself for that tomorrow and the withdrawal of the dilaudid combined with the side effects I seem to be having with the methadone is probably the reason for it. I'm going to ask them if we can try something other than methadone for the long term. I can get through the dilaudid withdrawal if I know that is what it is.

What else. Not much cuz I've been so freakin tired and sleepy that I've not been able to. I've gotta rearrange my sleeping area too, cuz I've woken up in terrible positions a couple of times with my head partially turned and all that. I think it is time to stop sleeping on my devided pillow and go back to a regular one. I'm going to go back to sleep now.

Visiting with my mom

2005-07-20T11:13:00.000-07:00

Been a bit quiet cuz my mom came for a visit. That took pretty much all of my energy for the last week. It was great though. My cousin Chellie and her husband and kids came down for 2 of the days. We mostly stayed around the compound, but mom went with me to my new physical therapist. (Yes, I finally got rid of the other one!) The new ones are great. Everyone agrees. It is a perfect fit. They do feldenkrais among other approaches. I like them, mom likes them, Eliot likes them. They like me. Woo hoo.
Mom helped garden, she helped clean, she helped cook. It was really nice. We spent a lot of time on the patio cuz Chellie's husband John is allergic to cats. It was a very nice weekend though. Mom and I taught Chellie and her daughter Haley to knit. I set mom up with her new iBook. I'm still having a lot of pain. Transitioning from dilaudid to methadone slowly. Got some good support shoes to work on walking in. I'm getting some tests done to follow up on the antibiotics thing, but don't know anything for sure yet. And in another 10 days I'll be getting my 3 month Xrays!
More about the physical therapy and stuff a little later. I gotta leave for an appointment now.

is it the antibiotics?

2005-07-07T16:47:00.000-07:00

My energy feels like it is slipping. I'm more tired, less clear headed and really feeling pretty weak. The weak part I'm hoping is just part of going from no shape to getting in better shape and building my strength. I was horrified at physical therapy the other day that I collapsed. My legs, just like they used to, went to jelly and refused to hold me up. Frack! I am really pissed off about it. Of course it made my physical therapist go in the completely other direction and not want to let me do anything at therapy. She wants to know if I'm hypoglycemic. No. My legs are trying to do their old tricks. But WHY? she wants to know. Well, that is the question isn't it. Of course she thinks it is impossible to have legs that don't support you and not know why. They recovered after a 4hour nap, but I've been feeling a bit wibbly since. So back to the question...is it the antibiotics? Every time I take megadoses of antibiotics I feel great for about 4-6 weeks. Every time I take a regular course of antibiotics I feel great for a week or 2. It is bizarre.

More about this after I've done some reading. Looking forward to input from those of you reading as well.

Physical therapists...as hard to find as a therapist?

2005-06-23T01:13:00.000-07:00

I've been to the new physical therapy happening 3 times so far this week. First time for intake and a little heat/tens unit action on my neck. 2nd time in the pool (shallow enough not to immerse my neck)...walking back and forth and backwards and forth and doing some stretching. 3rd time was today. I'm telling myself 2 appointments with someone isn't enough to form an opinion, but I'm feeling very torn. I like this place. They focus on pilates based physical therapy and water therapy. The physical therapist isn't trusting anything I tell her. If it isn't in writing from the doctor it isn't fact. I'm annoyed at the fact that I'm supposed to harass my doctor to put everything in writing that they've told me. I'm trying to keep in mind that she doesn't know me and thus doesn't know that I'm going to struggle not to do to much, not fight to not do anything. So some of it I've gotten in writing to close the discussion, some I'm still formulating. My doctors (I'm talking at least 3 different doctors independently here) are counseling patience and taking my time in building up strength and endurance and not overdo it. The physical therapist is saying not to bring my wheelchair into physical therapy and that I should just walk and that she's going to have me walking at least 4 blocks within weeks. Personally I like the latter, but seeing my recovery thus far and knowing that I've been in a wheelchair full time for 10 years am finding the prior to be more realistic.
Hmph.

Anyway, have any of you used a walker? Did you use a 3 wheel or 4 wheel model? What did you like? Why?

And if you haven't seen it (cuz it didn't publish for some reason) check out the posting form may 17.
'nite.

Where o where is Kriss...

2005-06-13T18:13:00.000-07:00

I'm a little over a month out of surgery now. This week has probably been the roughest since I got out of the hospital. I can't seem to figure out how to manage the bowel issues that come with being on narcotics. I've tried laxatives/softeners (of various sorts and in various combinations). I've tried adding in more fiber on top of those. The only thing that works at all realistically is an enema, though a suppository has worked on a couple of occasions, but usually left me manually helping it along (ack). My primary gave me a script for Miralax today. We'll see how that goes.

I've also had a lot more pain this week. I guess just another point in the healing process. I had moved out to the more usual 6mg dilaudid every 4 hours instead of every 3 hours and was just miserable. I was seen at the pain clinic in SF this week, but there are a lot of hoops to jump through before they'll change anything, so I am waiting to get seen by one of their psychologists...so last night I switched back to every 3 hours and feel somewhat human today, other than the sleepus interuptus of taking medication every 3 hours. The other pain addition of this week is the onset of bursitis. Mainly in my hips, from not having used them for so long (about 10 years) and suddenly being using them in a somewhat normal manner.

It is interesting that my inability to walk was due to the cranial settling, not the MS. I swear, it is so bizarre, but I can walk like there was nothing ever wrong...other than on the endurance front of course. I would say that post surgery I am probably rid of about half of my symptoms. Not that it isn't leaving me with plenty of health crap to deal with, but it brings it back into a managable range, instead of a staring at the giant abyss of health falling apart. It is being terribly difficult to adjust to the non-movable neck though. It moves JUST enough to make me wonder if I'm doing something bad to it...which is a couple of degrees.

I HAVE to deal with the glasses this week though. Since I can't move my head I need to learn to use my peripheral vision and I have tiny little glasses that leave all of that in the fuzzy fuzzy land. Oh oh...and I am no 5'2" tall!!! That is almost 2 inches taller than I was before surgery! I guess my cranium had settled A LONG ways!

Half way between the 2 & 3 week mark...

2005-05-23T11:59:00.000-07:00

...and I'm feeling half way human. Still at a point where I'm in a lot of pain if I am late for a pain pill. They said I wouldn't be feeling too great without them for the first month. I'm having a lot of muscle spasms and sticking close to the schedule for relaxants as well. I'm starting to feel more acclimated to the position of my head though. And the incision is feeling a little less raw. I'll have Eliot take some more pix of it today. Our friends are being great about coming around as we need things. Cleo and Juba came and helped garden yesterday and Leslie Mah picked up groceries for us. Eliot seems to be doing quite well. He's got a lot of art shows coming up and I'm only needing a medium level of help...finding getting water from the dispenser difficult, and I need help with things like running a shallow bath. Other than that it quite honestly isn't a lot more than he was already having to do for me on a daily basis (sadly...cuz it points out how much help I was needing day to day before surgery). The good thing is that when I'm fully recovered I should be able to go back to doing a more equal portion in the house. And I'm feeling well enough to be up and around and working on the computer for half an hour or so at a time, which means I can stay on top of the bills and stuff. It helps a lot to be over the thrush and infection-e stuff. I feel like my recovery is going really well. I can tell already it is going to become a challenge to remember not to lift things very quickly. I can't thank you all enough for all the positive energy. I feel so lucky to be getting the best of what we could hope for from this surgery thus far.

Home home home

2005-05-18T15:56:00.000-07:00

We are home. I'm having a very painful day. Things are very owie today. I'm moving slowly. Having to deal with putting out some fires on the day to day management front at the Compound. Funny how those things refuse to politely wait while you feel like ouch ouch. I don't feel too blechy other than that though, so that is still making me happy. I can't get over how little of the overwhelming fatigue I'm feeling. That fatigue has been my constant nemesis, almost ALMOST never relenting for most of the last 10 years. Not to say that I'm feeling particularly energetic yet mind you. I know that anyone who has never dealt with a chronic, debilitating level of fatigue that can hardly be described, can probably not understand exactly what this is like...but let me tell you, just being tired and worn out from travel and anesthesia and surgery and pain, is SO MUCH LESS overwhelming than the normal fatigue I've had for so long.

The back of my head is looking less like a scary crusty mess (labeled to be looking like cat poop by some). It is an interesting thing, the changes made in recent years in how the healing of wounds is handled. They've finally noticed that our bodies are usually the most efficient at keeping things sterile and cared for while healing. So now, intead of flushing a surgical wound and scrubbing it out a zillion times a day, you now don't touch it. You let your body handle it. What a concept. So my body is doing its job and the cut down the back of my head is looking better and better. It also minimizes the scar supposedly, so we'll see.

Now everyone that has ever been asked to flush a wound 3-5 times a day can wonder what their scar would look like if they hadn't. I know my mom and I were discussing that right away!

Love to all. I'm hanging in there. Thanks for your thoughts and energy.
Kriss

fortune...ate

2005-05-17T08:02:00.000-07:00

Eliot ran across a fortune of mine from dinner a few nights ago while he was packing...

You will come to realizations
in you life that change
you forever.

Needless to say I ate the cookie.

Head for the hills

2005-05-17T07:40:00.001-07:00

Hello all. It is 10.40EDT on the 17th and we're finishing up packing to head for Oakland. I'm relieved to be going home to my own bed, though I'm endlessly grateful to Neil & Pamela & Lucy for sharing their home with us. It was good to be in a cozy environment while I struggled to get myself sorted post surgery. The thrush is starting to get under control, though my throat is still a mess. Swish and swallowing yucky stuff. Got the staples out yesterday. Nice to be rid of those. You can now see pix of surgery from the main site. The link directly to the pics is here. I'm feeling slightly human this morning, which is good cuz I know I won't by the time we hit Oakland tonight. Better to start out feeling decent. Eliot is packing since I cannot lift stuff.

I still think it was a mistake for them to release me from the hospital on Friday between the infection/thrush and my digestive system not yet functioning fully, but I know the nurses seemed to be up in arms about dealing with the fragrance allergic asthma response stuff. I still don't understand a hospital that will allow that kind of stuff in the first place. When I am feeling better I will be taking on that issue with the hospital there and seeing if I can get them to create a policy for the hospital as a whole.

I'm still not eating much. It is hard to swallow and I've not got much of an appetite. I have plenty of room for some loss of poundage though, so it isn't dire. I'm making sure to eat things that are good, such as miso and rice noodles.

I don't fully understand the NO flowers in any ICU room either. That was a big downer to have to spend so much time in such a sterile room. Though the fold out toilet was pretty funny. It folded into a cupboard. There are pictures on the site.

More from the West side.
xo
Kriss

Owww.

2005-05-14T04:58:00.000-07:00

I am at our friend Neil's. It is so much pain. I've been discarged for a few hours. (It being 8am and they let see let me out about 8pm last night.) I am very convinced at the moment it was a bad ida.

I'm having a terrible time makng my hands hit the keys. They are hitting all of the wrong, keys. I'll leave an exmple back in here: thriat bery sore, I ssems like all of th epople an dtruo[ss un frong of

They are very hot to the touch. My fever started at 99.3F when I woke up due to pain and lack o sleep. An hour later I was at 102.2F. My hands feel like I'm burning. My head feels like I've got a hell of a fever. My mouth feels raw and painful. My throat is so unbelieivably sore I can't even compare it to something. I can't hardly swallow. I'm holding plenty still.

Bolognese called me after I paged the service. He wasn't pleased that I had been released, called in some Cipro which I need to go pick up. He is hoping 'just a UTI'. The wound looks good. I just had Eliot take a glamourous tour around the inside of my mouth and I have several open sores in my throat that I would assume are thrush. Waiting for call# 2 from Dr. on call...ah, yes...Thrush, among other plesant bits, I'm now on Cipro and Nystatin among other things. Bleh. Hopefully my throat and mouth will quit hurting though.

This is one of the most miserable days I've spent. I think I probably should have stayed in the hospital and Dr B didn't sound too convinced I should have been released from the hospital either. There were some of the personnel I was having to deal with that were making me nuts though~

Anywho. We'll get some pix up in the nxt couple of days. We're probably at Neil and Pamela's until Monday night or Tuesday morning. We fly home Tuesday. In the mean time I'm going to sleep, take drugs and sleep.

The incision looks really good I hve to say, from the photos Eliot has taken of me.The breeze over my face that is coming through the window is very lovely. I'll go back to the hospital to get the staples out on Monday. Before 1pm. I'lm hoping I'll feel better then.

Spinning and losing toucvh with consciousness.
xo
Kriss

Thursday becomes Friday

2005-05-13T00:30:00.000-07:00

Things today started with Kriss calling me early in the morning to please come over to the hospital right away. Shift change brought with it a nurse that did not get along with Kriss, and who did not keep anything resembling civil comportment with her. This led to a couple of hours of discussion with the doctoring staff, as well as a meeting with one of the nurse managers at the next shift change.

A couple of the folks that are on the Chiari email list that Kriss is a part of were having procedures done this week as well, and we met one of them tonight. Kriss walked around the corner to Konnie's room and I brought the wheelchair. We chatted with her and her husband for a while and then went back to Kriss' room.

The evening began well, but Kriss has developed a sore throat and was running a fever. Hopefully this is just a result of her talking more today than she has been, and not a strep or something of that nature.

It would be really great to get out of the hospital in the morning.

delayed release

2005-05-12T14:13:00.000-07:00

Kriss will be kept until tomorrow morning (Friday). I'll post more about today later.

Eliot

Out of NSICU and onto the main floor

2005-05-12T02:45:00.000-07:00

So, things continue here. Denise, the PA, is hoping to discharge Kriss in the morning, partially because she is doing well, and partially because of the ongoing respitory problems. At 4pm Kriss got moved from the NSICU unit and onto the main floor, as there were other patients who needed the ICU space. At least it is a private room.

We got a good, if brief, session with the physical therapist, Amy. She showed both of us a couple of different ways to deal with getting Kriss out of a sitting position safely. She also coached Kriss on get up / lay down technique. Short walks are going well, and Kriss walked part of the way down the hallway (on crutches) to the new room with Amy, finishing the journey in the wheelchair.

The staff on the main floor has been pleasant, and up to the point I left the hospital at 12:45am, fairly fragrance free. Only one incident thusfar. Knock on wood that it continues that smoothly.

Pain management (such a corporate type term that only an MBA could have come up with) continues to be a major problem. Surgery hurts. Even with the high level of pain, and a fairly high level of medication, Kriss is remarkably lucid. I can't say I'd be as eloquent in describing what was going on as she is being.

Kriss is happy to have flowers in her room finally, just in time for her to probably be discharged :)

So, hopefully, the next update to the log here will be from Kriss, even if it is brief.

best to all,
Eliot

Day 6- perfumeland in the NSICU

2005-05-11T02:33:00.000-07:00

First I do want to thank everyone who has left messages and sent email. Please know that it really helps our spirits that so many folks are sending quick messages, and that I am relaying everything I can keep in my pea brain to Kriss. I'm trying to get mail downloaded for her to look at tomorrow. It is not looking likely that she will be released now until friday or possibly saturday.

Second, I'm going to vent a moment on the subject of public fragrance. Since Kriss has trouble with fragrances, cleaning solvents, and a handful of other things that cause her asthma to flair, a sign was posted on the door to her room. While it has cut down on people entering the room while perfumed to the gills, Kriss has used her inhaler more in the last 3 days than in the prior last 2 months. Please remember this is an intensive care unit she is in, not a regular hospital room. Access is more restricted, and there are fewer patients for each of the nurses. One of the main reasons she has not been moved to the main floor is because of the inability for the staff to control what visitors wear in terms of fragrance/deoderant/aftershave, etc. While Kriss was lucky last time to have a great roommate, that might not be the case this time. So while this is supposed to helping, we are finding that the staff are some of the worst offenders.

Most hospitals enforce employees not using scented products, and most certainly do not alow anything likely to cause respitory distress to patients. Unfortunately, there does not seem to be a policy about this at North Shore University Hospital. I cannot begin to express how frustrating this is for Kriss, and for me. I'm not that sensitive to a lot of products used for personal hygiene, or personal expression. I was taught that perfume was for your lover, husband, wife, and intimates, not for the person at the end of the hall. But since everything must now have an odor, a "fresh scent" or whatever the pinhead marketing department thinks up next, we all must suffer the olfactory assault. I'm surprised more people don't have problems with all the unneeded chemicals added into everyday things. Things that show up a lot in hospitals, where people who are ill, recovering and otherwise don't need extra aggravation. I'd much rather smell someone's real body odor than all the other crap. It doesn't make my mouth taste like metal, and it doesn't make Kriss' air passages swell shut.

End of sermon about inappropriate fragrance.

Kriss had first visitors today. Our friends Lea and Spencer came by for the late afternoon visiting time, which was very exciting!

Lengthy meeting this morning on pain management and dosages.

Dr Bolognese was by for a while, and he and Denise, the PA, discussed removal of the surgical staples on Monday.

Kriss walked all the way down the hall using crutches, but we did not try another walk in the evening because the perfume level in the hall was too strong to get her safely out of the room.

Kriss resumed knitting for a bit tonight, and her appetite is improving, even thought she's still having a lot of nausea.

There's a lot more I could report, but that's all I can muster for now.

Eliot

Day 5 continues in NSICU

2005-05-10T00:50:00.000-07:00

Kriss continues to improve. The morning saw a brief visit from Dr Bolognese, the first physical therapist visit, and bathroom visits (bedpans be gone!).Parts of the day were rough, punctuated with a great cacophany of medical professionals that came and went in an endless stream from the room midday.
She is off of the PCA unit, so now she has to request pain meds instead of self administering. The pain specialist sent to take her off the unit failed to tell us that is what what happening until it was too late for Kriss to do a final push. They were supposed to wait until after replacement of her IV lock, which was causing her a lot of pain, and the person who attempted in the morning couldn't hit a vein. Finally the IV lock did get replaced by a specialist around 3pm.
Kriss was also fitted with an Aspen collar, to help support her neck while she is moving about and upright, both of which happened more frequently today.
Denise, the main person from TCI we have been working with at the hospital, wants to keep Kriss in the ICU until she is discharged from the hospital, which may be as early as wednesday. They are concerned with even more problems with asthmatic attacks if she gets moved to the main floor, so as long as they don't need the room for someone coming out of surgery, etc, she will remain in ICU.
I took a couple of pictures of the back of Kriss' head which I'll attempt to post on our website.

Eliot

Sunday in NSICU from Eliot

2005-05-09T01:10:00.000-07:00

Well,

Kriss did not have a good night last night. The CPAP was not working well enough as she had a nosebleed and was too congested afterwords to breathe through her nose. So she got put back on oxygen, and if things don't go well tonight, the respitory dept will bring up a bipap, which forces oxygen along with the postive air pressure.

When I arrived this morning her catheter had been removed and she was up in the lazyboy again. Makes me wonder if the hospital regimen could take into account that we are both nocturnal and that it isn't normal for either of us to be awake, much less doing any activity at 7 am.

She's complaining of nightmares, likely from the painkillers.

The nausea problem is making it hard for her to eat, and I'm having a hard time getting her to drink enough, much less eat.

Hopefully tomorrow she will be doing well enough to move to a regular room, so she can have flowers.

Day 3 from Eliot

2005-05-08T02:15:00.000-07:00

I walked into the NSICU this morning, and Kriss was sitting up in the hospital version of a lazy boy lounger. This is good! Still, she was very ready to be horizontal when the required time was done.

We discovered that Amy's Dinners have changed the ingredients to include freakin' WALNUTs in one of the frozen dinners that the dietary department ordered special for Kriss. This triggered a review of the entire line that they got in for Kriss to eat. I ended up making a trip to the Whole Foods closest to the hospital, which for those familiar with both the Food Ho, and with the Bezerkely Bowl in the Bay Area, well, think B Bowl on steroids directed by Woody Allen. We've stashed a couple of frozen items for mealtime in the ICU mini dorm fridge down the hall.

All considered, Kriss ate at least a little solid food today. Not much, but some. We are getting better cooperation on working the diet out here than any other hospital we've dealt with over the years. It still isn't good enough dammit.

We switched Kriss over to her CPAP machine to sleep tonight as her breathing has been quite ragged when she is sleeping. I hope that it helps her sleep better.

Eliot

2nd day Report

2005-05-07T01:05:00.000-07:00

Eliot apologizes to everyone who has left messages that have not been returned yet. I'll do my best to return all calls that I have not thus far between visits with Kriss. My cell phone only works intermittently in the room at the Variety House.

Kriss was moved from PACU (post anesthesia care unit) to the NSICU (neuroscience intensive care unit) around 3:30pm today. Because of her history of reactive airway (asthma) problems, and her overall sensitivities to anasthetics, the respirator equipment wasn't removed until around 10:00am. So it looks like Kriss will be in NSICU until Sunday, and most likely moving into a regular room on Monday.

Tomorrow the doctors want to get her sitting up, and want her to use the chair, and if she can handle it, her crutches. She is oozing a bit from the zipper-like incision/staple closure on the back of her head. We will start an icing routine to help the swelling on her neck tomorrow.

If you are thinking about sending flowers, which Kriss loves, she can't have them in the room until she is out of NSICU. And, it is likely that since Kriss is now a day behind the best scenario stay, she will probably not be released until friday next. Of course, this could change at any time.

anyway, that's what's up now.

Update from Eliot about Surgery

2005-05-06T00:15:00.000-07:00

Hi all,

This is Eliot masquerading as Kriss.
After 8 hours of surgery, the docs came out and said that things went well, with no complications. They did however, keep Kriss in the Post Anesthesia Care Unit overnight.
I was allowed to see her twice, and she wrote a couple of hard to read notes (can't talk with a tube down the throat still).
Tomorrow they should move her into a room, so no room number yet.
Sorry if this is abrupt; I'm not much of a writer.......

Eliot

T-6 and counting

2005-05-04T20:05:00.000-07:00

In 6 hours we'll be on our way over to the hospital for surgery. I'm excited about what's to come. I'm just not thinking about the recovery in front of me right now and focusing only on the surgery and how successful it is going to be and how I will go through it easily. My partner is very stressed. I'm pretty stressed too, but feeling prepared. Food tonight was a struggle. This hotel sucks, as do most of them it seems. Why is it so hard to make a hotel room accessible? It isn't I swear. Just think, and if you can't think then sit in a chair and try to reach things. I won't bore you with all of the details here, but I'll rant about the accessibility further at some point soon.
I just wanted to let you know, friends and family, that I love all of you and appreciate so much the great support and energy we are receiving and will be receiving.
See you on the other side. Keep up your chants, visualizations, positive energy and communications with your diety(ies). Know that you've done something great to help me.
And we'll focus on lots of long hikes in our futures.
Love to all.
Kriss

5.35AM and not a drop to sleep

2005-04-27T05:35:00.000-07:00

Argh. Another night awake. I so need my relaxation sleep chill out chill out. I've been off a bunch of meds (including NSAIDs) since the 21st and I am trying to handle more pain than I can really manage. Chin up (gotta enjoy it while I can!). Stop whinging. I am doing ok for the most part, the lack of sleep is getting to me though.

At least tonight when nary a wink is in site I'm alert enough to get some things done.

My MedicAlert bracelet came this week. The new perma telegram I have to wear on my person reads:
NEEDS FIBER OPTICS. STOP.
CERVICAL FUSION. STOP.
ASTHMA. STOP.
EHLERS-DANLOS SYNDROME. STOP.
NO LATEX, IODINE. STOP.

Is that really the most important things? I don't know. I went around and around with the MedicAlert peops. EMTs don't usually give Phenergan in the field. Hope not. Anaphylaxis sucks. I figure the MedicAlert thang is another one of those 'if you have it done, taken care of, in place...you won't ever need it' type things. Better safe than sorry.

Still trying to get ye-ole health insurance to deal with the appeal. The fact that I'm having surgery in 9 days is not cause for an expidited appeal in their view.

The list for tomorrow before we fly to New York is daunting. I better try again to sleep. 'nite

Procrastinating Appeals

2005-04-14T16:48:00.000-07:00

So here I am procrastinating from working on the appeal I am writing to my HMO. They are (of course) denying coverage for anything that approaches REAL care. The saddest part of that being that even though I live in a major metro area, and have ever since I have been dealing with major medical issues, I can't find doctors that actually sort anything out where I live. So I HAVE to go 2,927 miles east to find specialists that understand what is going on with my body. What part of piles of doctors, lots of tests, lots of $$$, no answers, bad treatment and mental anguish=local. One specialist unit, some tests, in the end a lot less $$$, some real freakin answers=out of town specialists can't they understand? Oh, right. Medical justification only. Let me lay it out real easy for you. One line appeal.

It will cost you less money to do it this way.

So here I am writing justifications to a pile of mental arguments that I can hear the appeals board coming up with, trying to answer any and all arguments in a single letter. Of course these arguments each require a lot of research since I am suddenly dealing with a lot of issues that I know only a little about.

Searches bring me to more interesting things to read (like Ghetto River Nymph's blog) which distracts me into responding to her, which distracts me into setting up my own blog. What was I doing? Oh, right.