Khan {an old thread that was bumped by accident}
 

Hello everyone
I am a 37 year old guy (a doc myself) diagnosed with TOS (neurogenic type). Got eval in St Louis and then Seattle.
Symptoms for 2 years. Misdiagnosed with Rt CTS and surgery done Jan,06. No relief. Then later dx with TOS.
Have small cervical ribs (bigger on left than Rt) but more sx on RT since I am right handed.

Got Botox on the 2nd of Nov,06, both sides (in Seattle), no relief. NSAIDs don't work.

Temporary but very good relief with Yoga. Massage helps a little, erect posture helps also but one has to be constantly on guard.

Sitting in front of computer with elbow bent at 90 deg, or writing hurts the most, driving, sitting in aeroplane, or lifting things up.

MR-Neurogram (-ve), scalene block (equivocal), Chest X-Ray (cervical ribs), Nerve conduction studies (mild CTS both sides), doppler studies of subclavian arteries show some constriction in certain arm postures. Physicals by surgeons (2 in Seattle and one in St Louis) all agree that I have TOS.

Reading the threads show its a pretty depressing, grim prognosis. I have yet to see one person on this forum mentioning great results with surgery or any treatment.

Luckily I don't have any other illness (atleast so far).

Can I mention the names of surgeons or that is not allowed.

Thanks for listening

Khan

Welcome to the forum, Khan. I also have small cervical ribs and my left side is also longer and while my worst symptoms, as far as shoulder drop, hand weakness,etc. is worse on the left side, I have more pain on the right side of my C-spine. I can't seem to get a doctor to explain that to me....Maybe from the right side trying to compensate for the left side? I don't know....But you've come to the right place. There are many here that can help you more than I can so hopefully they'll show up later to give advice. I haven't had the TOS surgery and have no intentions of having it and haven't seen any of the drs. in Denver. I'm able to manage my symptoms mainly with medication (no narcotics), ice or heating pads, and just listening to my body and adapting to whatever it's "telling" me at the time!:D My husband's internist has TOS and says that as long as it doesn't effect his golf swing he's not doing anything about it and one of the thoracic surgeons I've seen also had it and he also said he wasn't having any surgery.

Hello khan,

You can mention Dr names {especially if it is a good mention} we have a thread up in the sticky- the link to it-
http://neurotalk.psychcentral.com/showthread.php?t=135

in the same area {stickys} we have many links for a variety of medical & alternative therapies and sites {if you as a doc know of some other good ones please add to the list}
http://neurotalk.psychcentral.com/showthread.php?t=84

many with borderline sx get much relief from chiropractic, Alexander technique, Edgelow - basically bodywork, posture work, awareness.

you can turn the worst sx around if you really focus on the overall postures and uses before it becomes disabling.

But especially being a doc - if you ever consider surgery for it I think we would all agree you should see one of the top guys in Denver.

Perhaps the Drs you saw might have studied with Brantigan, Sanders or Annest?

We did have another site with medical articles - they were too large to add to the forums.
But lately the articles section at the msn TOS site has been unaccessible.

Welcome to you Khan! Glad you found us!:)
Anne

Dr. I find it quite amazing how little many doctors know about TOS and I am not saying this in a condensending manor, just that parts left out or qucikly passed over. I worked 16 years in a hospital laboratory and never a once never heard it mentioned once. I have had previous cervical injuries and surgery, but when I went to see the neuro-surgeon there just was not something sitting quite right with me and his DX and when I got home and went into a search engine relating to my symptoms Brachial Plexus Disorders kept coming up more solely TOS and low and behold there was a specialist within my area who told me to make an appointment and should he not be able to help me, he would help me find someone who could. I do not know if it was fortunate or not, he performed an extensive exam lasting almost 3 hours of twisting probing and prying looking over my MRI's and X-Rays and he came to the conclusion of TOS with the final clincher being an EMG! After seeing Dr Togut, he took me out of work for any form of gainful employment, which my emplyomer, the insurance company and their lawyers disputed!
In the mean time I contacted my own counsel and also made an appointment with a highly acclaimed surgeon out in Colorado whose specialty was TOS at which time I was also DX with CRPS (RSD)... yeah another DX. His recomendation was surgery on the left to include removal of the 1st rib scalene, trapezius and pectoral minor muscle as well as on the right opening the scalene and pectoral minor areas.
I consulted with my GP who had been with me through all my cervical problems and he added some more to my already amassing diagnosis's these being myfascial neuralgia and fibromyalgia. It just seems the longer I wait and the more the lawyers and insurances play around the worse I get!
When I went to see their specialist it came out that his true specialty was not that of TOS and also the person who did my EMG was employed by him for many years prior to a falling out between the two of them. If I were a patient of his whose diagnosis was based on by this man who performed my EMG, it would make me want to take a second look as to why they parted ways! I have had 2 EMG's in the past and this man seemed very thorough and competant, maybe it was not the man providing the EMG, but the Dr. reading the results the wrong way, since he was able to state weather or not to carryout the procedure.
I am not saying we all should be in a hurry to carry out frivolous lawsuits, I personally, just want to be fixed and if a doctor is unable to carry out the procedure, they should be able to help and identify one that can. And in my case I am starting to change my opinion that by waiting due to legal hold ups, that these law firms should be held liable for any negative changes that take place!
Dr. This note to you has taken almost 2 hours, due to taking breaks between typing and changing positions and yes I did use pillows under my elbows to take pressure off!!! You have found an amazing site where others come out to help one another in information that they have gathered, hope we can help even a learned person such as yourself as you may be able to share with us!!!!!!!!!

~~~Mark-n-Goober~~~

some completely biased advice
 

Hi Khan,

My background is in my post from a few days ago, so I won't repeat myself here. But my thoughts are as follows; you don't seem as debilitated as many of the posters, so I would think long and hard before consenting to any more surgery, which I'm sure you are, having had one already.

Next, if costs permit, I would fly to Denver and have the spiral CT scan done (mentioned in my post). This is a great diagnostic tool. Although we have the machine at UW (and Group Health, I believe), it's Dr. Brantigan in Denver who has the technician and the people trained to get the correct angles, etc. for the imaging of the exact TOS criteria.

Insofar as mentioning docs, we used Dr. Johannsen, who is the tops in the field in Seattle. Highly respected, very nice man, etc. etc. etc. Made a mistake in my husband's surgery, but docs aren't gods, after all. Well, maybe you are, but.... We will continue to use Dr. J for post-op follow through in January, as we still consider him the best in Seattle.

I think physical therapy is a viable option, but haven't had much luck in Seattle with anyone who really gets TOS. Again (I sound like the flippin' Denver's Visitor Bureau), the physical therapist in Denver http://ashbaughcenterfortherapy.com/...calTherapy.asp needed no ramping up for the treatment. Incidentally, their receptionist had TOS and several botched surgeries (2+?), had 2 reparative surgeries and is now happy and healthy.

Which brings me to my final thought regarding your comment about the grim prognoses on this discussion board. I've found that as people improve, they tend to leave the board.

Erin

I have to agree that finding this board was a quite a shock to my system. I feel for each and every one of you that have not been able to releive your symptoms, and can only hope that there is a population of people who are better and just haven't stuck around to talk about it.

If there are such people, there is hope for the rest of us.

Johanna

PS, Dr Jordan said that of the paitents they (he and Dr. Ahn) see at UCLA, they see a 70% long term success rate, 90% for the first year, and that they do not always know why surgeries fail, sometimes scar tissue, sometimes they have no idea.

I know some had quit or really slowed down on posting even before the crash of BT.
For a variety of reasons -
some found that even being at the computer/desk was not at all good for their sx.

Many may just read and not post or not even participate on forums much at all.
and I'm sure some have improved and moved on
some stay and check in
some have have returned to a more normal lifestyle and just don't have the time for posting.

Avoid surgery at CAlif Pacific Medical Center
 

Dear Khan- Please read my post under Neck DAmage due to TOS surgery--I too am from a family of physicians who I didn't listen too.
If you can still work--and still function--if Yoga helps--I would wait till I HAD to do something because with a cervical rib---perhaps you might need the surgery if the TOP surgeons think so--tho I'd get opinons from the MOST conservative. Unfortunately--there are some doing MANY surgeries but some of those are far too radical and ready to order surgery on a patient...as they are making their living that way. I wish I could help you more. I can just tell you what happened to me. I provide a balance here for those dead set on a surgical cure. Best, Triste

I have seen Drs that were posted in threads that were not covered under the Drs. Sticky List at the top of the thread page... it is difficult to find/monitor all threads for new doctors that need to be added to this list and I ask if you would send this info. directly to me via. a PM to DDayMBB,
when doing so I ask that you provide Drs, name, specialty, address, phone number and E-mail address if known thank you DDayMBB it would make it quicker and easier to get it up on the board quicker also one other request is to make sure the Dr or PT you want added is not already up on the board, unless there is a change of address, phone number etc. again please PM this info. to DDayMBB


~~~Mark-n-Goober~~~

TOS Success Story
 

I was diagnosed with TOS 12 years ago... after years of Docs trying to figure out what was wrong. Tons of PT, lots of pain meds and muscle relaxants. Finally had TOS surgery by Dr. George Thomas Providence Hospital Seattle. It took about a year and a half but the surgery was successfully. By successful I mean that I had reduced pain, improved quality of life. I still experience pain on that side if I over do, and have learned to compensate by using my left side predominately. I don't think you ever fully recover, but the surgery did help me.

That's really great news Karrie. So helpful to hear of positive results! What exact surgery did you have?

What helps me:

1. First I have bilateral TOS but pain on Left neck/shoulder.
2. Yoga. Chest openers (any). Roll shoulders back, pinch blades. No eagle pose, no down dog. Nothing that puts any body weight on shoulders. No push ups or plank.
3. Cardio exercise. Increase blood flow to muscles.
4. Long foam pillow against spine when sitting in car/airplane/in front of boob tube. Opens chest more.
5. Watch the posture in front of computer or when sitting. Remember...chest LIFTED, shoulders down and back. (no concave chest).
6. Watch neck posture. Lengthen back of neck, chin down or paralell and not sticking out front (no forward lean to head..it should be straigth up and down in line with backbone).

don't know about cervical rib...don't have that.
If elbow bent a 90 degrees while sitting...could be that you are applying pressure (even slight) to the shoulder...don't! take pressure OFF elbow.

7. Watch what you are "carrying" In my case my problem area is the "coracoid process" this is where the pec minor attaches as well as the bicep tendon (one of them). When carrying packages in front.these two suckers PULL down on the coracoid and create havoc for my Brachial Plexus underneath. One observation.

I (again, i know) have to say that cardio has worked great for me.
Some things doc told me to watch out for also-
- like NoName mentioned, any pressure on the elbow is bad.
- No holding things out at arms length.
- I have lost alot of strength in my left arm, so gripping "large" things like a half-gallon of milk is a no-no, because it causes MORE pain
- Dr. also told me to make sure i wasn't holding my shoulders TOO far back, because that can put pressure on nerves/arteries.

I had rib resection and the scalene muscles detatched (not removed). Update ... I have TOS on the Left side (huge bummer). I meet with the surgeon and they've now modified the surgery very rarely performing rib resection. Instead they generally perform a scalentomy (removal) and Pectoralis minor tenotomy. They gave me a Marcaine injection and my symptoms were almost completely resolved. This a diagnostic tool to assess for TOS as well as predict surgical outcome. Also had Botox to hold me over until I can have the Left TOS surgery. Hope this helps

Hey Kahn good to hear from you, welcome to TOS land! Think positive Kahn you may have luck right, after all who knows what will happen.

Everyone has docs they trust and use, there are very few docs in the nation who know much about TOS, and I'm sure the docs who treat us all know each other. They probably all get togather with confrences and stuff, I know I like my doc in MO.

Kahn stay positive I know it is hard to but who knows what will happen.

Khan
 

Could I ask u:
1. what speciality physician u r?
2. how long has ur TOS been diagnosed?
3. ur sx's?
4. what u r doing for conservative methods?
5. what have the surgeons reccommended?

I realize ur state of mind seeing that everyone here posts and there doesn't seem to be any cure.
I believe if TOS was/is curable we wouldn't be on here looking for answers.
However, there r probably 1000's of patients cured but never found the forum and just as many dx'd who haven't found the forum.
Reality check when I first found the forum was, "FABULOUS, OTHERS HAVE THIS TOO" and "O, ****...WHAT DO I DO NEXT?"

Take a deep breath
Hang tight, TOS is a ride.

just so there's no confusion Khans post is a old one from 11/2006- i don't know if he is reading the forum still or not. Khan hasn't logged on since- 01-24-2007

But a new member Karrie posted here so I'll make a new welcome thread for her.

j...
 

I'm not sure i get it...
What am I missing here?
Khan has not logged in for months but his old thread was posted?
It's so hard for me to spend the time reading posts, threads and reply's and its not going to be read by the member?


I get it...don't respond until you SEE the date(s) posted
DAH

Khan, If folks had good issues with TOS in life, adn pain levels they wouldn;t be looking for us on the forum is why there are not more good stories. But, many of the folks here have great support, find managment of their symptoms and information.

The more we learn the better to live with TOS. Also, to get it into a remission or decrease in symptoms.

I would not rule out Botox yet, it may not be the first one that works. I would not rule it out. Several have good results, even work with its use. My son had his first one reently and it was in the second affected side, but was thrilled with the results. It was a well placed injection.

With my trigger point shots, I make sure the doctor is on the mark, I never had Botox, but am considering it with son's good results.
Welcome to the forum, and perhaps you are our great story to come and we will have your example to look forward, too.
Dianne

Hi Khan welcome hope you well find help here or at lest some comfort in knowing your not a lone. I my self have not been on here long but it was a big relief to find other people with the same pain. To any one else reading this i just realized that a lot of you's have not had surgery. For me it is my only option and even then because i have had to wait so long Dr B has made it very clear that he is only hoping to lower my pain at this point. I have only been living with tos since sept 2004 and i know a lot of you's out there have had it for six yrs and longer. I found that physio only made mine worse as the months went on so Dr B said no more. I don't know if it makes a difference that i have bilateral and i know that a few of the tos'ers have the one side.

Old Thread
 

This thread is a very old one that got bumped up accidentally.

Khan hasn't logged on since- 01-24-2007
Just trying to save you the effort of typing a reply.

But don't forget long lost threads get read in searched by folks new and old on the forum everyday. So if we add additional information, perhaps the Author of the thread may not be back, but someone else will dsicover the helpful thoughts and information too.

I like reading old threads, gosh I wish we had some from ten years up to now from past forums to have a huge data base.
Di