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.