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.
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!
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