TOS from a patient and a surgeons point of view
 

I have neurogenic type of tos and has been living with it since early 20s. I first felt the pain and the subsequent numbness and tingling in my left arm after a minor car accident. I thought at first it was just minor bruising and soreness related to the accident. As time went on these symptoms only worsened. I was seen over the period of few months by neurologist, orth, and neurosurgeons. All tests including MRI and EMGs were negative. I was told that all these may be in my head.

With much frustration and anger. I researched extensively on the topic. I think the most important thing for me is to resist the use of narcotics for pain control. Physical therapy and relaxation therapy helped me greatly, I also took on yoga for a few years that helped me to maintain good posture and strengthen my shoulder girdle. I am currently doing very well with minimal symptoms. only time I get some level of symptoms is when I spent all day in the operating room. As a vascular surgeon that treats TOS. I believe the field is full of controversies and may be even fraud, even amongst vascular surgeons.

I believe that the best way to approach treatment is through a multispecialized approach. As a surgeon I make money doing TOS surgery ( which everyone has to keep that in mind, that there is secondary gains there for the surgeons) but as a patient that is essentially cured by physical therapy I believe that physical therapy is perhaps the most important part of the equation. I would be very happy to answer any questions you all may have. hopefully, i can provide you all with some level of comfort and reassurance.

Thank you for being so honest. The vascular surgeon that diagnosed me in May (after three years of symptoms and seeing other docs) was also honest with me when he saw me recently for follow up. He said that he would have preferred to have been the one who fixed me, but he was happy that I was fixed with physical therapy.

does your pec minor have to be spasming to have pms? or could it just be very very hypertrophied?

thank you so much!

what limitations have you had sense pec minor surgery?

were you able to do nerve glides pre-op?

are your shoulderblades winged?

Do you think any botox alternative (long term) can be available soon ?

http://neurotalk.psychcentral.com/thread177507.html

It would be incredible. and amazing. but i feel it is so slow..

what are they doing...

so weird i was just gonna ask that

i dont need botox in my scalenes but pec minor would be nice at least as a diagnostic tool
or some sort of injection

Yes, it is like there are safe drugs that effectively permenantly weaken cibled muscles and no one care about :confused:

yeah im tempted to try botox or something that weakens, i dont really want a muscle block all that much. those are just numbing, right? who cares. i want my freakin hands lol

http://www.ncbi.nlm.nih.gov/pubmed/21193463
this is an interesting article which compares npm to ntos

Yes but with botox only, there is a 10% risk of toxin spreading, it is very expensive, there is a resistance risk, and it last only 3 months, and there are risks of general weakness.. Botox is not cool.

So one injection yes, but not more. The more injections, the more risks you take, until it become innefective or you go broke lol (10 units = 100$, you need at least 60 each time for one side..) Botox is good, but we can't realy use it.

So we realy, realy need to have a permanent, if possible reversible 'botox like' for exemple botox + antiigf1, ricin-mAb35 etc..

would be better and way safer than surgery.

At least having active researchs on this would be very cool.

Weakening agents are very rare and they are like graal to us :) Specially to those with young onset and a vascular component.

But why no one care about weakening agents ? Are they satisfied with BOTOX or even surgery ? It seem that there are very promising agents but no one study them. always botox botox botox..

Why only 5 studies on ricin-mAb35 ? I just don't get it.

http://www.ncbi.nlm.nih.gov/pubmed?term=ricin-mAb35

In addition, in TOS i think there are hidden problems (if i trust what i have read the last months) :

1) A predisposition to thrombosis
2) Chronic cerebrospinal venous insufficiency with cerebral hypoxia (wich is a bad thing... a very bad thing when you look at sleep apnea consequences, or hypoxia consequences)
3) A risk of sudden hearing loss (i have rumble in ears sometimes, and when i exercice i can feel pulsations on the base of my neck. I don't know what is going on but it sucks, that is sure.)
4) A risk of renaud syndrome, fibromyalgia (if there is pain), crps.
5) I hope no but, maybe stroke

Having vascular compression is not without risks.

This is why i am actually very motivated to find a permanent weakening agent (one day), not just pain relief. I don't feel safe. TOS is a potentialy big problem to me, even if mild or near asymptomatic.

Maybe take a look at this, an other interesting agent :

"Long-term efficacy of local doxorubicin chemomyectomy in patients with blepharospasm and hemifacial spasm."
On humans Date : 1998 The last human study on this..

Sixteen (59%) of the initial series of 27 patients completed the treatment. Of these, all are apparently cured or their symptoms significantly ameliorated.

http://www.ncbi.nlm.nih.gov/pubmed/9479297

Why not trying or investigate this thing ? i just ask, maybe it is not possible for some reasons. Maybe it is not so safe.. don't know. There is an inflammation risk but it can be prevented.

I mean, why millions of dollars to study BOTOX, with 5 new studies each day ? Results are always the same.. cool but limited in time.

And 0$ to others agent, and 0 study.. Frustrating

Edit : Oh god when i start talking i never stop :D

Can and how does vascular TOS cause pulsating tinnitus and/or Tinnitus?
 

What mechanism of compression in Vascular TOS causes tinnitus and / or pulsating tinnitus? For me the "head noise" israel debilitating than the pain.

I dont know much about botox. I think of ntos as a problem with space or the lack of it.
As the nerves traverse the scalene triangle there is a very narrowed space and scalene mucle is one side of the triangle. To me botox will never solve the problem permenantly.
It only make sense to me to take away the scalene triangle completely. I think botox is way for those surgeons that dont know how to the surgery to jump on the band wagon. Botox is not an approved therapy for ntos fyi. And it is not endorsed by the society of vascular surgeons nor experts in tos field.

Pec minor in my experience is not related to spasm. But ot certainly could as the nerves are passing through a narrow space and spasm could cause compressions. I never neede pecinor surgery. I dont have a winged scapula as that is usually related to long thoracic nerve palsy.

What type of tos did you have?

Neuro and venous TOS. Diagnosed 6 years ago with nTos but recently had a 3d MRI at UCLA but do not have final report. So my guess is venous TOS.

MRA showed compression of jugular vein by manubrium and high signal in sigmoid sinus. Also compression of BP in thoracic outlet and other vascular compression. I'm waiting for the radiologists report. It was done last week.

i am actually trying to drive this point across in another thread. VTOS and NTOS are two totally different disease processed. VTOS is by definition compression of the subclavian vein at costoclavicular space ( the space between your collar bone and your first rib ) NTOS is the compression of brachial plexus in scalene triangle (triangle consist of anterior scalene, middle scalene and first rib ) These are two separate spaces. In my experience ( close to 260 cases in the past two years). the best diagnostic test is a invasive procedure called venogram ( done by a catheter in the affected arm vein and contrast dye injected under x-ray ) this is the gold standard for VTOS dx. MRI or MRV or MRA is not the test of choice. the universal symptom of VTOS( aka effort thrombosis) is arm swelling.

Thank you for the clarification. I am just now trying to get a correct diagnosis. Originally this was WC and spent more time with attorneys and retirement boards reviews than physicians. Yes I know I have ntos and aware of the scalene triangle compression. Recently developed vascular symptoms. Have yet to see a vascular surgeon. I was side tracked with a MCA aneurysm clip and finding a cause of debilatating pulsatile tinnitus. Do not have Dural fistula ruled by Cerebral angiogram.
So in general can or is pulsatile tinnitus a symptom of arterial or venous TOS.

Short answer is no. Arterial TOS patient 99% time present with pulsatile mass in supraclavicular area related to the aneurysmal degeneration of subclavian artery. Aneurysms in this are can do two things 1. throw clots down to the finger tips. 2 thrombose and completely occlude and cause limb loss. 1% patient can present with vertebral artery stroke because vert. a comes off subclavian artery when subclavian artery thrombosis clots can got to brain. I have seen it once. Venous TOS in additional to arm swelling can cause pulmonary embolism ( i think of the hansons brothers (the band) had VTOS with PE) . should not give you pulsatile tinnitus.

Hello~ I have a question and thank you doctor for answering questions about TOS.

I had the "TOS MRI/MRA" done in Northern California and on the MRA images, the left side just showed one tiny blood vessel blocked off in the arms up position. The right side, with the arms up, had a complete gap with all the blood vessels in what looked like a 2 inch segment black on the images. It was a dramatic MRI/MRA and the radiologist called me to tell me I had TOS and told me to see particular surgeons for surgical evaluations. I had a severe flare up after the exam. The doctors always said I had neurogenic TOS with a "vascular component". I had a palpable thrill/audible turbulence on physical examination in the supraclavicular area at the base of the SCM. What blood vessels were impinged in the MRI/MRA when my arms were up? Were the blood vessels impinged by the first rib and some other bone?

In my TOS workup, I saw 4 TOS surgeons/experts in various parts of the country and they all advised me to have the rib resection because my impingement was so severe. (So I did~ but only on the R side) I also had multi-crush nerve impingement, and I think my radial tunnel has had a lot of symptoms and may be responsible for many of my most annoying symptoms.

Have you heard of patients who have CRPS from TOS?

Thank you!

I can say I have.
Quite a few of the members I've "met" on the forums since 2004, had or developed RSD/CRPS at some point, also some version of fibromyalgia.

We more or less concluded on our own, that the longer pain & symptoms are going on , the more the body gets overloaded due to the stresses. Thus triggering these other conditions.
This is only our loose theory of course.
But it can't hurt to keep in mind relaxation, stress relief and good nutrition at all times, and more so when hurting.

Thank you Jo*Mar! It is terrible that TOS causes RSD/CRPS. It makes one wonder at how and what causes RSD/CRPS, which previously seemed like a delayed nervous system/autoimmune reaction.

I think the surgery, while relieving the impingement for the most part, stretches the brachial plexus to get the nerves out of the way so that the first rib and the scalene muscles can get taken out. So it kind of damages the nerves while saving them at the same time. I think RSd/CRPS is a kind of nerve damage, there is some kind of sympathetic nerve overstimulation due to the peripheral nerve impingement/damage. Even though I have had the rib taken out, my hand/arm still gets white/cold in flareups similar to what happened pre-surgery, I think the white/cold reaction is a more physio-chemical response by the nerves, not a physical blockage/impingement.

Hello NP4,

I am one of the TOS/RSD/fibro combos. There are quite a few of us, as JoMar mentioned.

I have neuro TOS. I spent several years being pooh-poohed, being told it was all in my head, with the only treatment offered being PT with weightlifting that made everything so much worse. Years of spending 12 to 16 hours a day with ice on the area trying to numb it to get some relief.

About 4 years into my struggle, after finding this forum and suspecting my issue was TOS, I founf a vasc surgeon who made the dx and sent me to a neurologist to start me off with appropriate conservative treatment, including PT with myofascial release. That made a critical difference in my L arm symptoms and with my arm and neck range of motion. No surgery needed....woo hoo ! Now I can do gentle stretching to keep my ROM. As long as I don't overdo things (and even routine housework or grocery shopping is overdoing things), my L arm is okay. Unfortunately, I was left with what feels like a burning golfball just to the left of T1, RSD, and fibro.

is p minor more likely to affect a nerve distribution than say scalenes?

my median nerve distribution is more numb than my ulnar and i dont have cts

seems dangerous to get surgery without having ANY diagnostic tests. i guess im going to have to go back to stretching my armpits out. they feel raw.

I developed a large pulmonary embolism 10 days after rib resection and scalene removal. They searched everywhere but could not find where it originated. I am wondering if what you have stated in the above quote offers any clue.

I'm confused.I went to a vascular surgeon today and they performed a ultrasound test which revealed no venous or arterial TOS. He said its possible that I have NTOS, but unlikely. He said that if the space of the thoracic outlet was large enough to not cause venous or arterial TOS it was unlikely that I had neurological compression. I was under the impression that NTOS was the most common syndrome presenting alone without venous or arterial. if thats the case, his statement would then be wrong? One of my symptoms is, upon elevation of my arm my fingers "lock up" and I am unable to open them until I lower my arm. He said he had never seen TOS present this way, and dismissed it as some other neurological disorder. He said I would have to see a neurologist to make those calls though. So I guess I'm left in further confusion yet again. Has anyone had a negative ultrasound with a positive NTOS diagnosis? And did everyone have to go to a vascular and neurologist separately to rule out the different types of TOS? Any input would be appreciated. Thanks.

Have you had EMG, x rays & MRIs, of all possible areas of concern, to rule out other possible factors?

Expert Physical therapy? Chiropractic?
Maybe a possible entrapped nerve that can be manually relseased?
My chiro adjusted my wrist, elbows, top rib, knee, foot, shoulder.. whenever I had a specific problem and needed those addressed.

Hey jo*mar, yes I had an Emg with irregular diagnosis (slight ulnar nerve entrapment and a slight slowing of the radial motor nerve on the effected side), but my neurologist said it didn't explain my symptoms. I had an mri of the neck with herniation and a bulging disc, but again the Neuro said it didn't appear to be pressing on the nerves. I had a mri of my shoulder to rule out rotator cuff tear. I had an mri of my brachial plexus in a normal laying down hands at side position, with negative results. I had 4 months of physical therapy, where the therapist was working on trying to adjust my rib on my effected side, which he said felt elevated. Left there in more pain most days. All of my symptoms are aggravated by the use/overuse of my effected side arm. Arm, hand, and shoulder weakness. Burning numbness in the scapula. And of course the inability to move my fingers when I elevate my arm.( excluding the little finger,which I can still move, hurray!). My Neuro mentioned NTOS and told me to see a specialist. Strike one with that today. Guess I'm just waiting for some kind of diagnosis so I know the best plan of attack,because right now I feel hopeless. I can control the pain sometimes, but never escape it. It's just extremely frustrating going from one doctor to the next hoping for an answer but instead getting another referral. I am trying acupuncture now which seems to relax me, but does nothing really to alleviate the pain. Sorry for the rant, sure I repeat myself in posts, but it helps to vent when you feel lost. Thanks for listening.:)

My left finger - same side as my cervical rib - locks when I play my cello. It's very frustrating. Ortho/neuro/vascular don't seem particularly concerned. Also frustrating.

Hi Finz,
I'm glad you did not have surgery for neuro TOS. I did not have that singular variety of TOS unfortunately as my blood vessels were being pinched or rather, quite vehemently squashed, by the rather large first rib and bands of fibrosis and other areas of impingement.

I had every diagnostic exam/test available to rule out or rule in TOS. I also saw and got treated by and am still being seen by a neurologist and saw 4 Physical therapists. My hatchet knife pain that was 10/10 above my scapula was not going away, because it was pain from a pinched/squashed nerve. Every diagnostic test was confirmatory for TOS in my situation, it was not a mystery that took a long time to diagnose in my situation, it was very obvious in my situation. I did not have mild TOS disease. If I had the means to have had the surgery earlier, I believe my outcome would have been better. I had to go for too long with damage and fat displacement around the brachial plexus nerves in numerous places. Fat around nerves is protective as you may know.

I don't like posting in forums because I don't like having my personal health history or decisions questioned or attacked or criticized. Everyone is unique and hopefully they make the best decision that is best for them! :-)

I made the right decision for my body. That is the best that each of us can do. It is only the evil insurance people who criticize because they are the penny pinchers who are paid to do that.

Physical therapy?
 

I have heard physical therapy doesn't help venous TOS, though it might help with the neurogenic symptoms. Is this true? One surgeon told me it's all one disease anyway, but yet people keep saying there are different compression sites and therefore treatments must be different. I took physical therapy briefly for my TOS, but mine is venous. Couldn't tell if it was helping. I did seem to get a lot of muscle spasms while in physical therapy and now I don't have those spasms so I don't know if I want to go back to physical therapy.

Venogram is it tech dependent?
 

I had this test preformed on me last week suggested from at least 4 twitter Interventional radiologists (yes I seem to have minimal support with my treating MD ) venogram ( done by a catheter in the affected arm vein and contrast dye injected under x-ray ) this is the gold standard for VTOS dx. ***Results ***they say the test was fine. Do you recommend the MRAMRVMRI?? I have all the warnings but I have intermittent swelling arm activity, as well as intermittent cessation of flow on artery and (veins arm up) You can view my photos on ** Thank you

Searching for that that level of comfort and reassurance.
 

Arterial TOS patients 99% of the time present with pulsatile mass in supraclavicular area related to the aneurysmal degeneration of subclavian artery. Is this noticeable?

Welcome, You can make a new thread of your own here -
https://www.neurotalk.org/newthread....newthread&f=24

Explore our TOS sticky threads & the site search is helpful also.

Hello, if your still around, may I ask what type of PT you’ve done, what type of exercises. If you respond, I have more questions if that’s ok. Thank you