It's only been a couple days right?

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 ?

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

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

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

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.

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.

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

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

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

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"

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

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

Kriss is now in Cohen 470

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

Kriss in Recovery

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

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