I saw Dr. Henderson again this week! My first visit was three months ago. I had several tests to complete in between visits.
The Plan: (this was my instructions)
1. Neck brace
2. Physical Therapy
3. Genelex (to determine he rate of drug metabolism which is often abnormal in EDS).
4.SpectraCell to rule out trace elements and vitamin deficiencies.
5. urodynamics to rule out neurogenic bladder, lumbar spine MRi, to rule out cause of low back pain surch as tethered cord syndrome.
6. follow up with me.
So I was supposed to follow up with Dr. H in two months, but couldn't get an appointment until three months (he's a busy man).
In my first visit to Dr. H, we found out that I had EDS, craniocervical instability and midcervical instability. We already know I had a small chiari (5mm). We needed to determine whether I had tethered cord. This visit confirmed that I did have tethered cord. I have mild scoliosis and a small syrinx in the Lumbar region. So before I can have the chiari fixed and the stabilization done, I have to have the tethered cord surgery. I'm pretty bummed about it! But keeping the faith! I have a son with mild autism and not so mild anxiety issues. I thought would be getting my head fixed during the summer and that I would be back on my feet by the first day of school! The way things are looking, I won't have tethered cord surgery until late August! Ugh! My first thought was to wait a year until next summer! But I think if I don't get this done, I'll be in a wheelchair by December (if not sooner).
I'm curious! Has anyone had tethered cord surgery, if they could share what the recovery time is for it? How long I would have to wait before I can have the other surgery. If anyone has had surgery for craniocervical and midcervical instability and chiari, what recovery was like? Anything anyone would like to share with me, I would greatly appreciate it! Thanks so much for your time! Hugs!!! :) :) :)
Thank you! Yeah, Dr. Henderson is pretty awesome! A very nice man too! He has me going for a second opinion in reference to the TC (on monday) and then I guess we'll be moving forward from there. I've had a terrible cold. It's so weird trying to sneeze in a collar! LOL And coughing with Chiari is not fun! ;) But keeping the faith! :) :) :) I'm looking forward to Monday and moving forward! Hugs! <3
I am curious about your son.I also have a 32 year old son who suffers greatly with anxiety and other mental health issues.He has been told that his condition could be Asbergers or mild autism.This does make me think about his genetic profile as I have both CMS and connective tissue syndrome like EDS.Your thoughts on this or anybody else`s would be appreciated.I also have craniocervical instability but the doctors here are very reluctant to operate.I think for fear of making things a lot worse.It`s very hard to imagine that.Thanks.
When I was at my last appointment with Dr. Henderson, I mentioned my son and that I was hoping to have surgery while he is on summer break. Dr. Henderson asked me if my son also was hypermobile like me. Apparently autism is also common in people with EDS. I've now heard this in a couple of videos. One of which was Dr. Henderson doing a lecture. My son doesn't seem to be as flexible, but he has so many other symptoms, it kind of confuses me and worries me.
I saw a neuroscientist today, who confirmed tethered cord. A second opinion. So after Dr. Henderson gets his report we will be scheduling surgery. I'm in so much pain, I can not wait to have this procedure do in hopes that it will bring great relief and have me moving and walking better! Hugs!
I had it as part of determining whether I had tethered cord. And it wouldn't have been bad, but the tech couldn't get the cath to (I guess) read on the computer. So she had to keep changing it (three times before she got one that worked). That was unusual she said. Just my luck! LOL But it wasn't bad, other than the faulty caths. The mri showed scoliosis and a syrinx,which indicates tethered cord. But they couldn't see the tethered cord on the mri. The urodynamics had a huge part in determining. some how they could tell from that test. Yeah, I have so much pain in my lower back. And it is become so difficult to walk. Just in the past six months, things have gotten so much worse. It worries me that if something weren't done, what would life be like in another 6 months to a year? I don't know if I would be walking at all.