My Neuro is clearly nuts

Pattymary88 · 02-20-2013, 11:48 PM

So I go and see this doc after my ortho told me he thinks I have TOS. I explain to him all of my nerve pain and how my arm feels tired all the time. Numbness in my fingers and arm. The choking sensation the lump at the base of my neck...blah blah. I explained about the four arm surgeries due to nerve issues. I told him my ortho said I have the extra ribs and feels I have tos. He said well all your muscles in your arm and neck are very tight. I explained that has happened in the last few days. He said I think you have myofacial pain syndrome from so many arm surgeries. Um NO I have never experienced this after any of the surgeries and I haven't had one in a year and a half. He said you need pt (i agree with that) and hopefully we can get you 50% better. I said for the rest of my life he said yeah. So I walk in complaining of nerve issues and you tell me I have a muscle condition that they can hopefully fix to 50% for the rest of my life. Okay gimmie a little credit I have had 8 entrapped nerve surgeries I know the difference between nerve pain and muscle pain. I said so you don't agree with the tos he said that is a very controversial diagnosis and will take a lot of testing. He said I couldn't find a pulse in your right arm and I tried one of the tos test and you shoulder got to fatigued to complete it. So then I asked do you have any explaination as to why I have so many entrapped nerves he said yeah your special....OMG are you serious? I said I understand its weird he said you probably got it (what is it?) from your parents....nope they don't have anything like this. He said see me after PT. This was after I waited an hour past my appt time. My appt was at 11:45 guess he really needed to get to lunch!
I walked out of the in tears asking myself did that really just happen.
Are neurologist the only people that diagnose this? I am so confused....I don't know what to do now. Another dam doc that thinks I am nuts! I know my body and I have been through this before....I know it is nerve pain. I am not a doc but from everything I have read tos seems to fit. Any ideas on where to go from here?

Jo*mar · 02-20-2013, 11:57 PM

Have you been to a vascular surgeon?
Usually if there are extra cervical ribs , that can be pretty straightforward when paired to the history & symptoms.

But a smart & knowledgeable TOS surgeon is worth the time it takes to locate one...

So many of us have had the same run around with MDs that aren't familiar with all aspects of TOS..

did you find our Drs & pt listing in the sticky threads?

LiveLoveandTrust · 02-21-2013, 06:46 AM

Unfortunately, this really isn't uncommon and neuro's are rarely the ones to treat TOS because A. They can't cut bone during surgery so they can't do the surgery in most cases. B. Many of them don't believe TOS exists and C. It's usually vascular surgeon territory. I recommend you see one of those. With the symptoms and the extra ribs, like Jomar said, it's much more clear for you than for many of us.

ginnie · 02-21-2013, 06:57 AM

I am so sorry you experienced a doctor who didn't listen to you. Yes most patients know the difference between nerve pain and muscle pain. Please don't give up, but continue on and find a doctor who will listen to you. Gather those records, and tell the next neuro what happened, and that you were not happy with what was said to you. Keep a pain journal of where the pain is and a really good description of it. Your PCP may have a recommendation for another Neuro. I would run from the doc. you just saw, and continue on and search for one, that can adequately address your situation. People coming to this site, don't make it up in their heads, we all look for answers in solving our medical needs. Just be pro-active. Maybe even consider a physiatrist, who treats the whole person, and pain issues.
If you cannot find a doc. in your area, post where you live and one of our members may have someone they have seen with approval in your area.

I know this made you feel bad. It isn't the end, but a beginning again to find the help you need. Your doc. didn't appear to be that interested. A 50% cure? how does he know ahead of time just how much therapy would work anyway.? You have to do the therapy before you know how much it works or not. Besides if he is treating for muscle, and it is nerve pain, I would be concerned as well. You don't want to make the condition worse. Usually, the therapy done is for the correct DX, not a doctors half guess.

I do wish you all the best. Please let me know how you do, and if you can get another appt. ginnie

Eddiemaverick · 02-21-2013, 08:16 AM

Your situation seems all too common, and it seems like the Doctors to see are the ones in the sticky threads. I can say that I was similarly frustrated until I saw Dr. Donahue at MGH in Boston. Really, with cervical ribs it seems like you need to go to one of the TOS specialists listed in these boards, and not spend more time and frustration with Dr's who haven't specifically specialized in TOS.

mspennyloafer · 02-21-2013, 10:44 AM

considering you have extra ribs

that is extra stupid!!!

Pattymary88 · 02-21-2013, 01:22 PM

Quote:

Originally Posted by mspennyloafer

considering you have extra ribs

that is extra stupid!!!

I see you are from GA......I live in Flowery Branch. Do you know of any doctors who diagnose TOS. The two docs on the sticky note for GA have retired. I have found docs that operate but you have to get diagnosed first and that is where I am having trouble. I start PT tomorrow I am not sure how that will go when my ortho who believes I have TOS sent in directions for my PT guy and the crazy neuro sent him something totally different. I have great faith in my PT as he has handled all of my therapy from my last five nerve surgeries.

mspennyloafer · 02-21-2013, 02:37 PM

Im glad you have a good pt

Im not sure whats up with ga. Doctors here are extra obvlious. Someone pmd me a dr in ellijay. Ill look for him when when im off my phone.

Hes the only one ive heard of

mspennyloafer · 02-22-2013, 09:12 AM

Dr. Carlos Salmonowsky in East Ellijay, Ga.

Pattymary88 · 02-23-2013, 11:37 AM

Quote:

Originally Posted by mspennyloafer

Dr. Carlos Salmonowsky in East Ellijay, Ga.

He is 81 and I don't think here is even in GA anymore. I did e-mail him and he replied. His e-mail signature has an address for Virginia. He did recommended a vascular guy Dr. Micheal Clark. He is at St. Joe's Hospital. I am seeing a Neuro in Gainesville on Monday....hopefully I will get somewhere! LOL I guess I will be the one to recommend some new docs in GA.