[fern]

I have nondisputible TOS and even have the studies to prove it. It's probably double crush--or so I've been told in the past. But I have lots of arm symptoms and especially on the not so bad TOS side, which for me is the right side and I am right handed. This makes me believe that some of my symptoms are things like tendonitis.

What I'd like to find is the correct diax for my arm and hand problems in addition to the TOS. I was diax years ago with bi-lateral tennis elbow but that was years before any TOS diax. I just went to a local physiatrist and he wouldn't even look at my arms, telling me that it doesn't matter what else I have and that he would look at me after I have TOS surgery on both sides. But the surgeons I've seen will only do one side, at least for now, and I may choose to never have the rib resection. I at least want to try to find what conditions I do have so that I can try to treat it or choose to finally go ahead with a rib resection.

So what kind of doctor usually diagnoses conditions like tendonitus... and is it possible to find one that can differentiate between TOS and the others? I haven't found a good doctor for TOS anywhere in town yet or I'd ask them for a referral. I am not looking to jump into any other surgeries but I'd like to get appropriate PT or some kind of pain relief or muscle re-education or something. I think that since I have ligament laxity that I am subject to lots of stuff being that I haven't been able to exercise my upper body in a long time. And I'm not sure what kind of doctor to see for the ligament laxity/ hypermobility issue either.

Any suggestions appreciated.

[waggydog]

Hi Fern,

Let me first start with a disclaimer that I am not a doctor, nor do I play one on TV ... however, I do have a couple of thoughts on your issue(s). First, I believe that if you have suspected or undisputed TOS that you should really work on correcting or minimizing that as a top priority. I'm not suggesting surgery as I do not have the expertise to even do so. There appear to be a number of alternative therapeutic strategies that one might want to consider first anyway, including PT, before going under the knife. For me, personally, surgery will only come as a last resort. Tendonitis is a common ailment often attributed to overuse and/or incorrect use. If you have TOS, I would suspect that you are doing both. You are overusing your "good" side and producing symptoms because of that and you are incorrectly using your "bad" side in an attempt to reduce your symptoms there. If you do have tendonitis, which wouldn't surprise me, you might want to address the underlying cause and not just the symptoms... i.e., you wouldn't just take an asprin for a headache caused by a tumor, right?. Most often tendonitis is treated with rest (i.e., stop doing what was aggravating the problem), icing the area and taking OTC NSIADs, which you could do yourself, however, any orthopedic doc should be able to dx this problem. With regard to the ligament laxity, whether this is congenital or brought on by a specific trauma, there are treatment plans for this as well and again, it sounds like an orthopedic doc should be able to dx/tx this - I would look for one that specializes in Sports Medicine. I would end though with reiterating what I suggested in the beginning of this response, which is to take care of your TOS - again, this does not necessarily mean surgery. It could be promoting your tendonitis and considering how the pain of TOS can really just be all over the map, I think it is very difficult to tweeze out other issues, especially if they are complications of the TOS. Most importantly, you don't want to "confuse" the issue and get treated for a lot of other things when the real problem isn't being addressed. All that will do is cause you a lot of aggravation with little to no real relief! Again, just a few thoughts. I wish you the best!
Waggy

Originally Posted by fern

I have nondisputible TOS and even have the studies to prove it. It's probably double crush--or so I've been told in the past. But I have lots of arm symptoms and especially on the not so bad TOS side, which for me is the right side and I am right handed. This makes me believe that some of my symptoms are things like tendonitis.

What I'd like to find is the correct diax for my arm and hand problems in addition to the TOS. I was diax years ago with bi-lateral tennis elbow but that was years before any TOS diax. I just went to a local physiatrist and he wouldn't even look at my arms, telling me that it doesn't matter what else I have and that he would look at me after I have TOS surgery on both sides. But the surgeons I've seen will only do one side, at least for now, and I may choose to never have the rib resection. I at least want to try to find what conditions I do have so that I can try to treat it or choose to finally go ahead with a rib resection.

So what kind of doctor usually diagnoses conditions like tendonitus... and is it possible to find one that can differentiate between TOS and the others? I haven't found a good doctor for TOS anywhere in town yet or I'd ask them for a referral. I am not looking to jump into any other surgeries but I'd like to get appropriate PT or some kind of pain relief or muscle re-education or something. I think that since I have ligament laxity that I am subject to lots of stuff being that I haven't been able to exercise my upper body in a long time. And I'm not sure what kind of doctor to see for the ligament laxity/ hypermobility issue either.

Any suggestions appreciated.

[fern]

thx Waggy. I've had long-term TOS and RSIs and had plenty of treatments from expert PTs and saw a good neurologist in the past. And I do my best to keep up with a physical program. But now I have some new issues. I tried seeing a local physiatrist but since I had multiple musculoskelatal concerns he just opened up his fibromyalsia wastebasket and tossed me right in. I may choose to or not to have TOS surgery on one side or on both but I want to know the diax so that I can address anything I can make better. Also I've got another problem that needs surgery first so my rib-resection would have to be delayed. I'd love to be able to handwrite a page or fix my own dinner on the same day that I exercise. I've been waking up with a lot of bi-lateral elbow pain. And I have the elbow pains whenever I hold something lightly or even keep my arms bent and not supported. The local PT said that people in cold climates get lots of aches and pains and dismissed it as that. I just want to find someone who can help me sort through the problems I'm having. At least now I know that I'm hypermobile and that when I can't be strengthening I am subject to getting all this stuff. I had a surgery 2.5 mos ago and lost strength while recovering. Since I need another surgery I want to get in shape as much as possible so I won't further decline.

[waggydog]

I'm really sorry to hear that. I don't like the fibromyalgia basket. I didn't know your hx but now I see you've been through the TOS ringer. Perhaps an orthopedist might be helpful for you then. A good one should be able to recognize the differences in the TOS and your other symptoms if they have a different origin. I wish you all the best.

Originally Posted by fern

thx Waggy. I've had long-term TOS and RSIs and had plenty of treatments from expert PTs and saw a good neurologist in the past. And I do my best to keep up with a physical program. But now I have some new issues. I tried seeing a local physiatrist but since I had multiple musculoskelatal concerns he just opened up his fibromyalsia wastebasket and tossed me right in. I may choose to or not to have TOS surgery on one side or on both but I want to know the diax so that I can address anything I can make better. Also I've got another problem that needs surgery first so my rib-resection would have to be delayed. I'd love to be able to handwrite a page or fix my own dinner on the same day that I exercise. I've been waking up with a lot of bi-lateral elbow pain. And I have the elbow pains whenever I hold something lightly or even keep my arms bent and not supported. The local PT said that people in cold climates get lots of aches and pains and dismissed it as that. I just want to find someone who can help me sort through the problems I'm having. At least now I know that I'm hypermobile and that when I can't be strengthening I am subject to getting all this stuff. I had a surgery 2.5 mos ago and lost strength while recovering. Since I need another surgery I want to get in shape as much as possible so I won't further decline.

[Jomar]

I didn't have any luck with the ortho I saw for my symptoms, and he was highly rated.
He did do a great job on my knee bursa surgery though.

My daughter & I have found a Osteopath and he has nurse practitioners that are very good too.

I haven't had to see them for any TOS problems yet.
But my daughter has had some spasms and knots in her back so she had tx by the NP & then the in office PT.
I was impressed as I talked with both of them and the tx they did for my daughter.

[DiMarie]

Hi Fern,
Just a thought or two recalling our experiance with Tos and having a tendonitis flare.

Having long term complicated TOS my daughter went for an IME. She flared terriably from the doc that grabber her arm and raised it before I could stop him and had to grab his arm to STOP!
( A TOSER can only lift their arm on request to a range physically managed, a IME doc will raise and twist it stating in the report that full range of motion lie),
So after the exam De ended up in full pain on the sidewalk in front of the office they were in. I went back in and they had two options; call ambulance or go to ER.
De had me take her to our local ER almost 2 hr trip. WHen we got there, the ER doc stated it was tedonitis. I told him to call upstairs to Dr. Togut's office.
I told him I had been told by the ortho that tendonitis is local, and down not have traveling symptoms. He symptoms went down the arm to fingers up the under side to the chest and flared.

Now another time she still having all the TOS symptoms had excrutiationg pain in the shoulder area, much like a flare, but not where she had flares, new spot.
The ortho a top guy, not for TOS but best ortho, took an xray after telling us most typically it was her TOS, but if tendonitis it would show on the xray.
He took one, it DID show up! He gave her a steroid shot in the spot, and it DID help.

So tendonitis is not long term as TOS, it is local to the spot, and responds often to steroid shot or NISAIDS.
If a doctor has not been able to determine it IS tendonitis, he can not treat you for TOS either, say goodby. If he takes and xray and it is not tendonitis and he insist, while it is a symptom, not new, typical of your TOS, he can not treat you either,.

If you have a managable pain level if you can treat yourself, I use a good soak in epsom salts, Toradol, (kidk butt anti inflamatory), an oxycodone 5/350 and valium (muscle relaxant properties). Me I ice my headpain flare and heat my back after biofreeze.

If you have a new pain like a tooth ache, in the area of the shoulder upper arm muscle, it can be tedonitis and get to an ortho for best help.
Good pain management support, meds that help, not anialate you, ways to live by accomadating, no reaching , no repetative, carry things close to chest not dragging on the arms,etc.

Life is about managing it with TOS, whether in remission, post surgery, or same ol' same ol'. Don;t let TOS manage you. As a long time member tells us!
Take care,
di

[sandi_k]

Originally Posted by fern

I may choose to or not to have TOS surgery on one side or on both but I want to know the diax so that I can address anything I can make better. Also I've got another problem that needs surgery first so my rib-resection would have to be delayed. I'd love to be able to handwrite a page or fix my own dinner on the same day that I exercise. I've been waking up with a lot of bi-lateral elbow pain. And I have the elbow pains whenever I hold something lightly or even keep my arms bent and not supported.

Fern, I sympathize. I was told 7 years ago that my arm pain was tendonities. I iced, ibuprofened, PT'd and massaged, and it got better a bit, but never resolved. The dr. refused to do anything at that time but insist it was tendonitis, and I was never Xrayed or received and MRI. He wrote an insulting summary for the Permanent and Stationery report, and said they'd done all that could be done.

Fast forward 6 years later - dreading the oncoming cold weather, I decided to go back to the dr. and see if there were any new treatments.

This dr. did an Xray - which negated a skeletal TOS diagnosis, but revealed degeneration of the neck.

A later MRI showed significant disk degeneration - and bony osteophytes pinching on the spinal cord - right where the signals for the arms are generated.

Originally Posted by fern

The local PT said that people in cold climates get lots of aches and pains and dismissed it as that. I just want to find someone who can help me sort through the problems I'm having. At least now I know that I'm hypermobile and that when I can't be strengthening I am subject to getting all this stuff. I had a surgery 2.5 mos ago and lost strength while recovering. Since I need another surgery I want to get in shape as much as possible so I won't further decline.

It could be arthritis - my aches in cold weather are attributed to arthritic changes, and yours might be as well.

My current diagnosis is degenerative disk disease, osteoarthritis, possible TOS, and tendonitis.

There is one thing you don't mention - meds. I have been on low dosages of Elavil as a way of short-circuiting the chronic pain signals to the brain. It's been a Godsend, most especially because it helps me sleep.

I have problems with elbow pain in the morning too. The eleavil has helped that, but I also have to make sure I don't sleep with my arms extended. I've added a small pillow at night so that rather than stretching out fully, I stretch out, and the hand hits the pillow instead. Sort of like a barrier, so I don't stretch in my sleep.

I also pile pillows on my lap when reading, again so my arms don't over-extend.

So, check out osteoarthritis, put pillows in the bed and on your lap, and ask about micro-doses of elavil. Every little thing helps!

Sandi

[fern]

Thank You all for your good ideas.

Sandi-I realize now that I developed the elbow pains when I had to start sleeping my back 3 mos ago. It helped my TOS arm numbness but created the other. I will try the pillows elevating my arms at my sides now. Always a matter of paying close attention to the body!

I have had tendonitis like stuff for 25 yrs and I understand now that TOS is only one part of the picture. I've been able to realize things on my own and with the help of PTs, etc but I really feel like I want a "partner" in a doctor that will help me put it all together and who can make intelligent suggestions regarding meds, surgeries, etc. Due to my Hypermobility, I have been able to understand why many of my body parts beyond the brachial plexus have had and are subject to health issues. I know that my body needs to remain as strong as possible so that I don't get additional strains but my problem is that I am often unable to keep fit due to body pains and these days surgeries. And I really haven't been able to exercise my upper body for over 4 yrs due to TOS and that weakness is now creating more problems.

I have an appt with a new neurologist on Tuesday but I am thninking about canceling it. I haven't found any neurologist since I moved from CA that knows or treats TOS. This one, like others, said they do over the phone but when I get there it's another story. Like the physiatrist last week whose said he treats TOS but when I arrived told me he hasn't yet and dismissed me, telling me I have fibromyalsia and to come back after I have 2 rib resections and another needed serious surgery also related to my connective tissue.

I don't think it's wrong to want to understand what is going on in my arms and hands in addition to the TOS because I can then try to tailor my exercise routine or PT or meds or ice/heat to try to address them. That is, unless you people keep me on track and tell me that it is pointless to know the diff diax?? It's not for WC, I just thought the info would be helpful for me and my practitioners. And I won't go through with one or both rib-resections unless absolutely necessary. Dr. Annest told me that people live with some degree of vascular compression just fine and wasn't certain of my need for surgery w/o some repeated tests. I'd like a doctor who can communicate with the TOS surgeon to help me get the tests repeated w/o traveling out of state but so far I haven't found one. I'd also like to get someone to confirm the Hypermobility so I can do anything possible to address that. What this means for anyone who doesn't know is that the laxity in the ligaments allows for instability of the joints and allows the body to easily get all the many things I've had over the years. From tendonitis to osteo-arthritis to cervical disk and joint disease to torn or overstretched ligaments to TOS / brachial plexus syndrome. I've had a few surgeries over the years to correct injuries that my PT believes were mlore easily caused due to hypermobility. And right now I have some serious pains in addition to the TOS and I'd like to be in better shape before having my next surgery.

I could try a rheumatologist I suppose or an ortho or the neurologist. I'm getting very weary with the whole thing. I've been able to get local doctors to refill my CA prescriptions but noone to help me evaluate what meds would be best suited for me at this time.

[beth]

Fern,

Don't know if you've been this route, but if not, might be worth a try. Before you do, ask ANYONE and EVERYONE you can who they recommend, ask any nurses you know who they would see, ask your PCP who he wd send his wife to. Really spend time getting an idea who are the top ones in the field, that will listen, spend time at appts, research, and not waste your time.

A rheumatologist can help with the hypermobility issues and also any arthritis related issues. Be sure to demonstrate, just so they can observe, HOW hypermobile you are, all the joints that are hypermobile and just how bendy they are. This is important to do, once, as certain levels of hypermobility along with other traits may nudge the Dr to send you for genetic testing. These Drs probably understand best what a challenge PT is for hypermobile
TOSers! They will also order blood tests which may sometimes show auto-immune issues and any other counts or values that are abnormal.

I don't know that they will be able to adress the tendonitis directly, but that is likely related to both the TOS and the hypermobility. They may order x-rays or MRI, then develop a plan of PT for you, which hopefully wd include ultrasound (that deep heat works wonders for me), or they might refer you to a shoulder doc with more specialized knowledge, then confer with him after your appt, but I think having that understanding of your underlying soft tissue laxity is crucial to effective treatment.

I have the same condition, and have found that most Drs really don't pay any attention when I mention this as if they can't see how it could pose any real problem. Well, it didn't much when the nerves and muscle were healthy, but once the nerve is damaged and the muscles are weakened it makes it next to impossible to strengthen them again, especially when you have TOS. And it does mean a lot of twisted ankles, popping jaws, partially dislocated hips and knees and the like, and more aches and pains in those joints as we get older from all that popping in and out!

Anyway, that's my suggestion! Good luck finding the Dr and the answers you're looking for - seems like it's like playing the Lottery almost.

beth

[fern]

thanks all. my appointment is today. i'm gathering my files and my stamina to take another stab at finding what i need in a neurologist--and hopefully a referral to a good rheumatologist. and some good news is that i found out that i can delay my next surgery 2 months so i want to use that time to get stronger if possible and "train" for another recovery period.