Long time lurker, first time poster.
 

Hi guys, Richard here, looking for some advice on where to go next With doctors, physio, and potentially surgeries.

Using dictation to write this, so sorry for any errors.

A bit about me; I have been suffering with what my pain specialist believes to be thoracic outlet syndrome for two years now, and haven't worked for a year.

Symptoms started as a bit of pain in my right shoulder after a days work, or waking up with a bit of pain. This gradually got worse To now where my neck, right shoulder, right arm, right hand, and wrist, Burn, tingle and hurt constantly.

My job is on a Minesite, I spent a lot of time at a desk, and driving off-road. Later on, desk work became unbelievably painful.

I have had MRIs, x-rays, CT scans, nerve conduction studies, of my neck, chest, and shoulder. None of these scans showed any abnormalities, other than some bursitis in my right shoulder. The TOS diagnosis took a year and a half!

A shoulder anthroscopy removed the bursitis, But didn't do anything for the pain. Later injections into my neck facet joints did help the pain- C6-7 injection turned off the pain between my shoulder blades.

The pain specialist wants to inject my scalene muscles next with Botox. If that doesn't work then I guess surgery- since they don't know what is exactly wrong it would just be a general poke about.

at the moment I have been prescribed lyrica, and a anti-depressant nerve agent called Allegron- both these helped initially but now don't seem to do much. On top of this I have the opioid pain killers, tramadol, and muscle relaxant's. I only take this from time to time when it's bad.

Day to day I take a pilates class in the morning , Recommended by physio-I find the gentle stretching helpful, but some exercises aggravate it. After that I take a spa/sauna. This really helps to relax the muscles. After that I take a rest, then take a run or walk, then do some more stretching, and back to the sauna in the evening. I find keeping moving helps. If I have an evening or afternoon sat on the sofa watching TV it really aggravates my neck and shoulder.

The questions I have for the Forum are;
1 which specialist should I be seeing? Is it a vascular surgeon? Neurologist? Neurosurgeon? or should I stick with my pain specialist? I don't feel my TOS has been throughly diagnosed, and my hand and forearm pain properly investigated.

2 my neck seems to be the primary cause of pain now. It's weird since it started as a shoulder problem. Has anyone else had this migration of pain?

3 which doctors are best to see for report writing? I am about to go to war with an insurance company for liability. I think my pain specialist would do a good report. But it's not really her area of expertise. Would a neurologist be best? The independent medical investigator I saw hardly gave credence to my work duties causing the TOS-he was a consultant occupational physician

If you have read this all this, thank you. I feel a better for having got this off my chest, and shared amongst people who can relate.

Welcome rich88. :Wave-Hello:

Hey Richard, welcome to the group. Glad you were able to get things off your chest. I know a lot about this, I've been dealing with TOS for 22yrs. Most test are going to come back negative, but don't be discouraged. I suggest seeking a Vascular doctor that knows about TOS. i don't know where u live, but u can search for doctors on this forum. It might be one in your area. I can't tell u how many neurologist I've seen. Most doctors are going to keep repeating the same test, so be aware. Most neurologist are going to do the nerve conduction test, and the majority of those are going to be negative. But if u haven't had it, u should have it done. As stated, go to a vascular doctor. TOS is a difficult illness, I've had three surgery and still not better. Long story. You can read some of my writings on this forum if u like. GOD bless, and don't give up!!!

22 years and 3 surgeries!!! God, ur a trooper!

Thanks for the advise. Il be weary of more tests. Luckily iv got a pain specialist and neurologist who both acknowledge the tos diagnosis. It's definatly I time for a vascular surgeon since the symptoms and getting worse- now hand weakness and trouble keeping my arms up.

What do you do for work? I can't see myself being able to work as a geologist again due to the amount of desk work, and the physically demanding environmennt of a minesite.

Have the drs clarified what type of TOS you have?
Nerve, Vascular ( artery or vein?) , pec minor also? or disputed TOS which is a mix or a sort of chronic RSI version?

You don't mention swelling or heaviness, and do mention pain , so I'm guessing probably mostly Nerve..
Drs & pTs -
http://neurotalk.psychcentral.com/thread135.html
Or post your location for suggestions of nearby TOS docs.

very useful mega crash course info -
http://neurotalk.psychcentral.com/thread84.html


I think most of us will suggest , if PT or anything aggravates your pain/symptoms , don't do it .. it only makes the nerves angrier. General PT will often use a standard generic plan and it rarely works out well for TOS.

If you can find a highly skilled and knowledgeable chiropractor , they may be able to be of help. Especially if they use a variety of modalities, for healing.
If there are misalignments at least those will be addressed so they won't impede progress.

Welcome Richard! I would also recommend that you see a vascular TOS specialist.

About work...this is something that haunts me every single day and very discouraging when I see how many people have had to give up work because of this disease. The lack of money and lack of self esteem have already become a problem for me. Although I have LTD, I am only getting half of my base pay and I miss my bonuses. We wanted to buy a house...well, it's not happening. I have no idea what kind of work we can do. Isolation from not working is getting to me big time too.

Thanks for your response. I'm glad u are going to see a Vascular Surgeon. Yes, 22yrs and still dealing with more issues. I haven't been on here for awhile because of the issue I'm having from my 3rd surgery. I have so much to write about it, but don't have time. Just a snip it of what I've been through since this third surgery. The first two surgeries were on my right arm. After those two surgeries I was still have problems. I worked as an accountant, on computer every day. As I was working, I started to have problems on my left side. I'm shortening my story, but a lot has happen. Same symptoms started on my left. As I continued to work, my left side had gotten worse. I went to the doctor and he informed me I had TOS on left side. He stated if I didn't have the surgery a sap, I was on the verge of losing my arm. I kept working about 3 more months. I had the surgery. They removed two scalene muscles and first rib. Well every since this surgery I haven't been able to use the arm period. The arm is of no USE to me!!! My job fired me while I was on STD/ LTD. I was told by doctors I had frozen shoulder, had surgey for that. But I still can't use the arm. No strength, burning, electrical shocks, swelling, and on and on. I can't make a muscle and lift anything. I've been to sooooo many doctors and repeating the same tests, only to be told they believe my Ulnar nerve is damage and still having TOS related issues. Could write more but I'm going to leave it there.

So make sure you ask all the questions. Ask them what kind of TOS u have? If u are having surgery, what are they going to do? Please, please make sure it's a doctor that knows what they are doing. If I can be any help, please keep asking questions. Despite what I'm going through, I know the LORD is still in control and the head of my life. Keep fighting and seeking answers. TOS is a disease that is baffling the medical community. So find the best Vascular Surgeon in your area. Take care and I'm praying for u.

20 years tos, I do remember when you were about to get your surgery, it was around the same time I got diagnosed. I'm sorry you've had such a bad outcome. I have to admit I did not want to believe you when you said this is for life but every day I seem to believe more and more.

Thanks Nellyzen for your response. I only want everyone who's dealing with this to realize it might be a long process. In my 22yrs of this, the doctors have said so many things. Yes you feel better after the first month or so, but once u get back doing things u had done before it might return. I want and pray that everyone will get better, but I know what can happen from experience. I've spoken to others and they are still having problems. In my heart of heart, I believe a lot of speculation is going on. But we all must keep fighting, pushing these doctors, and ask questions. I might be having a fourth surgery. So much back n forth with sooooo many doctors, but my faith is still strong. By the way, I didn't mention the three times I've been to PT. In my opinion, PT is a waste of time. In my 22yrs of TOS, PT has not help. I have so much to write, but I will keep you all up to date. When this is over, I will share more about what I've been through from my last surgery. Nellyzen don't give up, and keep FIGHTING!!! Have a bless night.

I think everyone is in denial in the beginning because we don't want to believe what is happening or hope the pain will just go away eventually. PT is a waste of time and can also do more damage if the issues are vascular and arterial like in my case.

Nothing left to say, I'm in pain today. Have a good night!

hi! i am also a tos sufferer looking for support&info
 

Hi everyone. I just joined this forum and I am so relieved to know im not the only one struggling with this. I too am hoping to get some feedback from other sufferrers about their post surgical outcomes. Just to sharw my story (as briefly as possible) i was diagnosed this past june with venous tos after I painted my living room and developed a complete occlusion DVT in my right subclavian vein.

I never really noticed any symptoms prior to this,i always just tbought i had decreased strength and my arms went numb when doing my hair\above my head. Initially they diagnosed me with paget schrotter but when they did the venogram they noted long term damage in my subclavian. I underwent 1st rib and anterior scalene removal and was sent home. 10 days later I was diagnosed w another clot in my subclavian and a clot in my axillary vein. They did a trellis procedure to remove the clots and sent me home a few days later. I will be on lifetime coumadin because I was also diagnosed at that time with antiphospholipid syndrome, an autoimmune clotting disorder. Additionally,I've had symptoms on my left side as well.

I just saw my doctor for my followup. At the time of my surgery he said it would take a full year to recover and to know if there is lasting damage. Since surgery I have suffered with chronic pain, swelling, and occasional discoloration of the arm, spasms in my neck&back, inability to sleep on my right side, numbness, tingling and what I think is neuropathy. I asked my doctor why I was in pain, he said he didn't know, that it wasn't post thrombotic syndrome and that it was likely 'nerve adhesions'. My options are a venogram to determine if surgery to repair my damaged subclavian is possible. My surgeon has only done 5 in his career. Being that I am only 28, and I am unable to work I am considering surgery but, due to my doctors lack of experience and a bad experience with a resident during my last procedure I am seeking out a specialist. (It is always your right to refuse care from residents&students and I encourage it, there is no reason to allow someone to practice on you when doctors who have been doing this over 20yrs still lack experience treating the condition) anyway, i feel that everyone should get a specialist and second and even third opinions, when considering something as important as surgery to regain function of your limbs.

From the research I've done, there are two doctors I am looking into. Dr Robert thompson at Barnes Jewish thoracic outlet centet in st Louis. And Dr dean Donahue at mass general. Additionally, on my search I found a Dr in Denver and a few in California. And one in Arizona that had a lot of positive outcome patient reviews. I should've written their names down too but I'm I'm upstate ny so I didn't write them down but this site has a great list of drs. Who specialize in tos. In a different thread

If anyone else here is reading this and has had experiemces with either physician if you could let let me know how it went I would b so appreciative.

I wish you all the best of luck with your conditions and would b happy to update you on how things go with mine.

:-) mck


"Autoimmune disease, because the only thing tough enough to kick my ***, is me!"

Hi there!

I believe you are referring to Dr Gharagozloo in AZ and he did both of my surgeries. I am happy I had the surgeries but I am not yet 100%. My last surgery was at the end of Oct 2014 and I am still at home, unable to work. The pain has decreased significantly but increased activity causes pain. So what I'm trying to say is that I feel fine if I don't do much but once I try to use the computer in a work simulated environment the pain comes back. Considering I was in the pain 24/7 and not mild pain, this is progress. However, I do not know when or if I will be 100% again.

Between dr Thompson and dr Donahue, I would go to see dr D. That's from what I learned from others.

I have obtained great info here on this site and see many folks who are strong willed. My respect goes out to all who continually post here. Believe me, I wouldn't have gained half the knowledge I now have of TOS. With that said, it is also the most depressing place to read info. I'm sorry to put it so bluntly. I'm also sorry to anyone...and I mean ANYONE who deals with TOS. It is truly baffling to me right now. Please continue to fight the good fight, for others it's still a struggle to even wrap their head around.

I've gained a new respect to anyone experiencing subjective irrmeasurable "pain". Eff TOS.

I got retrenched today :( Time to find a company who will take on the liability of someone with TOS/RSI injuries...... gotta think a bit positive tho, perhaps teaching or something like that where you can do a lot of standing, no lifting, and minimal desk work.

Iv been reffered to a neurosurgeon specialising in the brachial plexus area- my dr seems to think my TOS is neurological. I gather its a contentious area over whether to operate or not.

Thanks for the PT advice, il start seeing her less. Physio did get me off the couch, and out of the 'self pity' stage. i now do Pilates daily which helps sometimes, hinders other. Most importantly though, it takes my mind off it!

Thank you all for the support.

Richard

Bobby, I hear ya. If you think this place is depressing, try the Facebook group, haha!

Don't get me wrong, I got a lot of good info there too but it was way too much and I left the group. People will post about their pain every few hours and then everyone else joins in. About 1500 members.