Hi Everyone,

Most of you know I have the TOS/RSD DX. Are these SX TOS or RSD?

I am post OR 9 months from having my subclavicle artery released, and I had surgery on the Brachial Plexus nerves. The best thing I could do is walk, but I get very light headed and dizzy. If anyone has any ideas I would appreciate it.

I hope for the best. But should I plan for the worst?

Hugs, Roz

HI Roz,

I had surgery on nerves, no vascular but they put me on the recumbent bike and had me do 15 minutes at a low pace in the beginning. 15-16 minutes was a mile.

I hope that is what you were asking. I don't know what to do on the dizziness. It still annoys me when it comes.

Hope you have a good Saturday

Hi Shelly,
My surgeon says don't do anything much. No P/T. I was told not to even sit up very long. I believe you have the same surgeon I do, but I am nerve injury, subclavicle artery compression and I had vein involvement as well. My pain levels are very low. But I am no wimp but very, very, dizzy and light headed. Is this Tos or RSD. Does anyone know? Hugs, Roz

Hugs, Roz

Have you had a repeat neurography lately? Prior to my re do I was becoming very week I had trouble walking up the stairs I would become dizzy and sometimes unsteady. Dr Filler had to spend an additional 2 hours on my surgery this last time. The scar tissue had built up quite heavily around the ulnar nerve. He told me that the septra film from last time had not taken. This time he had placed a double dose. I am now having sever burning and color changes in my right arm. They believe it is from the sever compression on the nerve. I see Dr Filler on the 21st and at that time if the nerve has not calmed down then he will look into a ganglion block. Maybe it is possible you have scar tissue building up on the vascular area again.
I hope for the best.
Many Gentle Hugs
Dawn

Even though you had surgery this might still be a symptom of the TOS. Also you might want to be checked for Vertigo. That often comes with the TOS.
Also could be your meds. I am finding if I take a little too much of my Methadone compared to what I'm use to and use a Lidocaine patch also I end up dizzy and lightheaded.


Ada

Hi Roz,

Sorry I think I might have misinterpreted your question . I am so sorry you are feeling so dizzy. Is it more of a dizzy room spinning feeling or more off balance feeling. Do your ears feel full? I know it's a sucky feeling. Don't know if it's TOS or RSD.

A couple thoughts though and this is based on my current way of feeling so it may not be applicable at all. If it sparks a thought great, if not I am sorry.It's just a shot in the dark.

My dizziness has been off and on since the surgery. Even felft like my balance could not keep up with my eyes. Weird feeling. I told Dr. Filler about it but he did not think it was related. So I decided to go to ENT/Head and Neck Doc. He told me everything looked fine from the outside but that all those nerves that Dr. Filler operated on lay close to some of the nerves that lie close to the head and ears. I told him that it always improved when Filler put me on steroid packs for the nerve imflammation over the last couple days. The ENT said well ears which control dizziness and balance always respond aawesome to steriods and vey quickly too. He said that he thought maybe the inflammation from the nerves and the surgery was a large enough area that inside where he could not see that the nerves going to the ears and the tissue around where chronically inflammed. And when I hear the word chronic I know it will take me a while to fix it. So he gave me a steroid nasal spray and so far it is helping. I still get that dizzy off balance feeling more in the evenings now but it has improved somewhat.

Maybe worth going to see ENT doc?

Anyways many to you and I hope you start to feel better soon

Roz,
Could it be something else, related to medication. 9 Months is too long to be anesthsia, but, it could be something else medical or medication brewing.
Have some blood work done, there may be a small chance of some scar tisue growing around the vascular bundle too, maybe a MRI or something could show that.

Check your sugar, thyroid, even heart for some kind of issue.
BY playing deduction and ruling out, medical or medication then can start to say maybe some scar matter or adhisions where they don't belong or other issue.
Is it any other times, like waking up, or sleeping

I would cut down on length of walk, and make sure you support your ams on a fanny pack or pockets, don;t swing them. Swinging arms is a big no no to TOS whether post op or not.
Hope it resolves,

di

Hi Roz,
could it be vertebral artery sx?
I forgot do you have any c spine issues?
Does you neck feel tighter than usual?

that may or may not have anything to do with the V artery - but just asking.

I did have very strong dizzy, vertigo, weird spacey visual stuff happen during the beginning of my rsi/tos injury.
It would come and go in waves and was worst when I was standing still- if i was moving it affected me less.

I did think at first that is was regular vertigo- and got some Dramamine- but it only helped for a few minutes, if that.

The most telling part for me was those sx gradually faded away as i got PT, was off work and all the self care stuff i did at home.

I did have a separate bout of dizziness and then rapid heart rate last spring. but did blood tests and such - which all came back normal.
and then the sx faded leaving the doc to think it was just an odd bug of some sort.

Hi Everyone,
I want to thank each and every one of you from the bottom of my heart.

Dear Shelly, What you have stated makes so much sense. For the first 2 years I was miss DX with a torn rotator cuff with pinched nerves running down my arm. Then I got the RSD DX. I did not get DX with TOS untill 4 years into it. I got 3 opinions before going into surgery. They all said surgery, in my case. Filler MD saved my arm. I would have lost my right arm if it wasn't for him.

Dear Dawn, Please do not be like me and cancel your appointments with are Doc. Hang in their. With the recent RSD DX I only hope it will burn it self out right away. You need to move quick, you are time sensitive. Big Huge Hugs, Roz

Dear Ada,

Please take care of yourself. I know you have the the TOS/RSD DX as well. Like Mike has told me it's not like winning the daily double. Be good to you. Huge Hugs, Roz