That is a fact!! Just imagine having 3 surgeries, 10 days apart and the symptoms post op in the neck and BP are worse than early on.....tightness with almost a "paralyzed, numb, a very strange sensation in those areas and up the side of jaw and face." Just don't feel right and have fatigue better part of the time....and it's not related??!!!!

chloecasey

My main concern at this point is getting a diagnosis and pursuing disability. I am completely unable to work with the symptoms I'm having and I need some doctor to get behind me on this if I have any chance of being granted SSDI. Whether the symptoms are from NTOS or hypermobility or Ehlers Danlos, the treatment is going to be the same. If my vascular surgeon is not going to say that NTOS is still an issue, then I need an issue. Because whether or not he likes the problems I'm having, I'm having them and I can't keep waiting. I've not been able to hold gainful employment for the past year and a half now.

It's so unfortunate that those of us who have had complications and ongoing issues can not find out why and if there could be a resolution....is it that they don't want to believe that these issues are happening?, don't want to believe that there can be consequences that are out of a patients control as a result of surgery complications.
If the issues post surgery were not occuring prior to surgery then to me that is the likely culprit. All of the nerves get messed with, etc......maybe if it was a family member or friend who had these issues, it would be a different story!!!

We have a Social Security Disability forum, you should explore it for help on that aspect. Check the sticky threads there too, for how to start a claim & tips.
http://neurotalk.psychcentral.com/forum28.html

I'm not sure if you need an exact dx, or as long as drs agree you are unable to work at any job (gainful employment?), but that forum has good members there to help with applying & questions.

The most important thing is to get in the queue. I applied for SSDI and it took 4 and 1/2 years before I got it. I agree, you are going to have to describe symptoms rather than diagnoses, if the doctors haven't nailed that down yet. Of course, it's better to have something concrete, something that can be demonstrated.

For me, the hearing officer relied on a 3DMRI/MRA performed by Dr. James Collins at UCLA and on an MRI done by Dr. Scott Werden in SF. My attorney had to make copies of documents in the court's file and we could see where the hearing officer highlighted those test results. He also noted them in his comments during the hearing.

If you start the ball rolling, you'll likely have time to develop better facts (in the way of diagnoses) before you come to hearing because the process is so darn slow.

So, the results are in...

I went in to the vascular lab today to have my post-op Doppler Ultrasound to see what surgery has done for (to?) me.
My left side has been successfully decompressed- at least from a vascular standpoint. I can say that some of the neurogenic problems (in my arm at least) seems to be better. My right side is no longer compressed in the areas it was compressed pre-surgery but is compressed in new ways post surgery. I was told this could be due to scar tissue formation or possible pectoralis minor syndrome. I'll see the doctor on Friday and will be told at that point what, if any, action is going to be taken.
I'm not responding to PT mostly. My range of motion is back but my pain levels are the same though the pain no longer radiates into my arms unless I've been overly active. Right now my shoulder blades are absolutely killing me because they're riddled with knots. My neck is so knotted up that it's pressing my hyoid into my trachea causing a choking feeling.
On top of that, I'm having some weird symptoms. They seem to correlate with the surgery but they're so strange that I can't imagine how they could possibly be connected. I'm tired all the time. Mentally and physically fatigued. I nap during the afternoon for a couple hours quite often and wake up drained and sandy-eyed. But sometimes, I can't sleep at all and am up until 3:30am begging for sleep. I'm not able to safely drive anymore. I lack the concentration, visual memory, and alertness to do so safely. When I have driven, it feels like I'm on complete autopilot and like none of my actions are conscious decisions I'm making. The other day I was driving to PT only a few miles away from my home and didn't remember where I was on the road. Nothing looked familiar. This is a road I've driven hundreds of times and have been in the area of for over a decade. My muscles from the waist to my neck including my arms all feel stiff and like they have to move as one (as though I'm wearing super tight jeans and a corset) There's no fluidity in the way I move. The thought of reaching for anything in which I have to raise my elbows up from rest is exhausting. So is getting out of the car. To the point where I was in tears the other day when I realized I left the house without the debit card and knew I'd have to drive back up the road, walk up the stairs and go back. I almost didn't go back out at all. I've also been having additional nerve pain over my hips, in my butt, and at the tops of my feet. Also intensified nerve pain sometimes in my upper arm but not like it used to be and not all the time. I'm also getting sharp pains down the side of my neck.
Before surgery, at least my symptoms were all somewhat contained. I knew that it was one problem that just needed a name. Now, they are so widespread I feel like I must be going insane.
Just thought I'd share an update.

I understand feeling like you're going crazy. I felt like that in the very beginning (before surgery). Every time I went to the doctor I had a new complaint. It was really confusing and unsettling.

I had unsuccessful surgery 8 years ago. In the time since, I have more widespread pain, too. For instance, headache pain is now in different places where it used to be mainly behind my left eye. Nerve pain used to follow the ulnar and radial nerve, now it includes the medial nerve, too. I've had similar "spreading" pain in all the areas of my body where I have pain.

My own belief is that the neurogenic pain is poorly understood, the response to surgery is unpredictable and the progression of the symptoms (and, indeed, whether the condition is progressive) is up for debate. Vascular symptoms, and their response to surgery, seem pretty straight forward. As for neurogenic TOS, it's a black box. My two cents.

Hi LiveLoveandTrust

Have you tried going to the Institute of physical Art website www.instituteofphysicalart.com and tried to find a CFMT on the list for Connecticut?
My personal experience has been pretty amazing I have had a lot of pain issues similar to yours in the past but I saw 2 CFMT's, one in LA and one in the Bay Area who has also done a PNF program and they prepared my body for recovery by getting rid of the knots and scar tissue by using ART and myofascial release over a period of 6- 7 months and mobilizing the nerves. Now I am able to do all the stretches and shoulder girdle progression exercises my other therapist has taught me( she happens to be in another country, i just came back after working one and a half hours everyday for a month with her to condition and strengthen).
But the point is don't give up hope, please try and find a therapist from the above website. They are just of a diffferent calibre.If not all,they can atleast help you with some of your pain issues. It took me three years after my surgery to come to this state where I feel I am able to put this behind me and live a normal life. I still have to do my home exercise program but I am able to finally get off all pain meds. It has not been easy, I am young and have 3 kids and I have had my frustration and tears.
Ofcourse you can still apply for the aid and legal stuff but please keep working on your physical recovery. There is a difference between therapists. If some don't work for you, it does not mean all won't work.
Good luck and I hope you find all the help you need.

Stos2,

May I ask who you saw in the Bay Area? I've tried lots of physical therapy over the years but to no avail. I'd like to keep trying. I'm in the East Bay.

Thanks,
Kelly

Nope, no one in my area. At least, not close enough (within a half hour) that I'd be able to go see regularly. They're all over an hour away :-(