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
- 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.