20070118
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.
20070116
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.
20070112
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.
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.
20070111
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.
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.
20070110
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.
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.
20070109
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
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
20070105
20070104
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
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
20070103
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
Love,
Kriss
20061108
Tethered Cord Surgery in January
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.
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.
20060704
The NO FRIENDS rule @ venues
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?
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
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.
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.
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.
20060302
How do I go?
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!
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!
20051119
6 month checkup
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.
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.
20051023
Good grief...
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.
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