[ramdas]

[FONT="Arial Black"]hi Akash,
I am from India based out of pune and suffering from tos. Could you please message me ** so that I can get some information about tos doctors in India

Thanks
Ramdas /FONT]

=Akash;1083419]Hi, this is my story I guess...or nightmare more like.
I am a male based out of India, around 36 years of age.

Around 6 years back, I was going through a rough patch & was tired & not thinking straight. Got on a bike with a rash acquaintance who said he'd drop me. I ended up face down having fallen off the bike (it was around 30-40 mph), on the left side & I had severe facial lacerations on the left side. Long story short, I ended up in the hospital and they sent me back after some basic work saying MRIs/spine x rays checked out ok. A few days later, I immediately developed chronic pain in my fingers/hands/tingling (left much worse than right) & my right trapezius/back/shoulder would seize up with terrible spasms in good posture.

Six years and many doctors later, I have been told its not a disc issue (I had a cervical disc bulge at C6-C7 and some doctors misdiagnosed my issue as spondylitis).

Now, a doctor has said my issues are TOS & has asked me to undergo myofascial therapy & put me on Neurontin.

Here, its next to impossible to get decent advice on this complex condition & I am hitting a brick wall each time I try to figure out possible approaches.

Work is computer heavy & very stressful (demanding timelines) - and I need to figure out how to actually live my life as versus ending in the miserable existence that I have had for the past six years.

I would really appreciate any pointers on how to proceed with further diagnosis - I would even be willing to travel to the United States for treatment or diagnosis. Is there anyway to tell which side my nerves are entrapped & what conservative options should I explore?

[Kris1978]

Hi there!!!

I'm new on here, and just wanted to reach out to anyone else that has Spare Cervical Ribs in their necks. I have Bilateral ones. I recently had a Specialist tell me I'm most likely suffering from Cervical Headaches as well. My range of motion is not hindered at all, so injections are not needed. Although, Physical Therapy just isn't affordable , and really a Chiropractor isn't either. (Even with insurance) My Dr. has tried me on a couple different things, that hasn't worked out for one reason or another so I'm in pain EVERY DAY!!!!!

This has all been a very recent diagnosis to me. And a lot of web sites use technical mumble jumble that's hard to understand!!! I would appreciate any help, or advise from anyone!!!

Thank you!!!!

[krivda]

Hi there...everybody
This is a short history just as my story with TOS is starting....
I'm a 31 y.o. anesthesiologist from Romania...
First symptoms were paresthesias in my last two fingers 7 years ago while studying for an exam....went away in 3 days...
During my residence in Belgium 4 years ago had excruciating pain with vascular symptoms in my left hand while on call...Vascular surgeon on call told me the vascular signs were just a reaction to pain...3 weekes later couldn't intubate by myself so had to take 2 days off and went for emergency MRI of my cervical spine which showed "just a swan neck due to many years of ballet"... all symptoms went away after deciding eventually to take some tetrazepam (I was afraid to take it lest I wouldn't wake up in the morning)...
All good until a month and half ago when at the end of a night shift I felt the same familiar pain with intense cyanosis of my left hand...
Went immediately to the vascular operating room and the professor there told me, after feeling for my pulse...it must be TOS.
Had angio-Cat scan...normal. 2 MRI s- cervical spine and brachial plexus....normal, no cervical rib...
I'm in pain everyday...and can do my job only with extreme pain...
I already can do no on-calls anymore...
when I found this forum, I bevame really depressed...I couldn't stand losing my job as I ve worked really hard to get here and although the pay is horrible the satisfaction makes up for it ... also , taking away pain seems to be my mission in life
Until now, what I've seen is that:
-pain meds don't help (me, at least)
-psychiatric meds only sink you deeper...
I don't even dream about having surgery without abnormality on any scans...
I am trying qigong, some (probably crap) russian osteopath, and physio by myself as PTs here have no clue about what this is...
I'll keep you posted but I am determined to be totally functional again...sooon
Take care everybody,
Maria

[Kimharchie]

af carpal tunnel release in September, since then I have been having neck issues. Went to my family Doc and saw his PA, she sent me fir xrays and gave me muscle relaxers. Nothing found on xray. During final follow up for cts release surgeon sent me to PT for my neck. The PT guy says TOS. Went back to primary and he ordered MRI cause at this point I can hardly move neck and muscles spasming, with pain and tingling in left arm to hand. Primary thinks cervical. Different PT guy also says TOS. Went for MRI today and now am waiting.

[Jomar]

Originally Posted by Jo*mar

Please make a thread for yourself on our main TOS section so all can say hello there.
You can copy your post from here ,so no need to retype it all again..

Main TOS page
http://neurotalk.psychcentral.com/forum24.html

Make a new TOS thread -
http://neurotalk.psychcentral.com/ne...newthread&f=24

Welcome new members.

[penguinsfan7]

Law76

I am a 21 year old guy and I actually got diagnosed with TOS (they called it Paget Schroder Syndrome) and was diagnosed with a blood clot in my subclavian vein three days after my 21st birthday. My right arm became purple and extremely veiny for two straight days so I knew something was wrong. I spent roughly 10 days in the hospital due to how busy the hospital was.

On the third day in the hospital, they attempted an angioplasty going through my bicep, but did not have any luck because my top rib was pushing up on the vein so tightly. Two days later I had the rib removed. Two days after that I had another angioplasty in which they "believed" they expanded the vein and they fixed the problem (i'll get more into that in a little). I was sent home three days later and was put on blood thinners for a month

After my one month check up, my doctor took me off the blood thinners and told me to carry on with my normal activities. Low and behold, 8 days later I had the swelling and numb feeling in my arm again! I went to the doctor the next day, they took an ultrasound and found that the vein collapsed on itself. My doctor did not give a clear cut reason of why it happened but he believes it was because they did not go deep enough on their previous angioplasty. So the next day I had another angioplasty (my third one) and I was sent home the following day. They prescribed me lovenox for 3 months (which sucked).

It is now 7 months later and I am 100% fully healed from all of it and off blood thinners.

You should feel pretty honored, TOS is not very common so embrace it!! It's one hell of a story to tell people.

[shrug_dealer]

July 2014: Had a nasty accident/fall that resulted in a broken nose, fractured teeth, a small fracture of my hard palate, concussion/post-concussion syndrome (diagnosed) and a bruised swollen hand.

Late November/Early December 2014: First noticed problems with left side of neck, clavicle/shoulder. Could see a visible jugular pulse when looking in mirror and vein would become slightly distended when in certain positions. Discomfort, pressure, fullness and some pain in side of neck.

March/April 2015: Arm involvement noticed. Felt like pressure and heaviness in left arm with some shooting type pains going down the length of the affected arm. Veins sometimes distended on arm. Also notice a pulsating mass just above collar bone/ in scalene triangle.

November/December 2015: Left side symptoms start to calm down and hardly bother me at all. Start getting headaches mostly on the right side of my head (occipital/parietal and behind and around right eye).

February 2016: At this point I finally relent and go and see a doctor. I'm admitted to hospital due to blood pressure on right arm being 180/100 and because of current symptoms (headaches are virtually daily and some vision problems like blurring/ghosting/sublte doubling, and weird blotches, sparks, flashes etc).

I'm given a CT of my head which is normal and referred to ophthalmology to see an eye specialist who tells me I have developed a squint and the vessels behind my left eye are prominent and the blood flow to that eye appears strained. I'm prescribed ramipril for hypertension (BP when seeing the specialist was 159/88).

Currently dealing with throat discomfort and discomfort on the right side of my neck/shoulder/clavicle area. There is some arm involvement...My right hand gets noticeably cool at times and I have the familiar pressure/heaviness at times. Also experiencing some lightheaded/dizzy spells at times. No syncope/near syncope.

I cannot lie supine for any extended periods of time. Its just too uncomfortable. I'm much more aware of the pulsations in the right side of my neck.

Concerning me most at the moment is the fact that I have cold feet most of the time. I don't see this adding up as being a symptom of TOS...? It makes me worry that something more serious is happening.

In a nutshell, this is horrible and I need some answers. I don't even know if this is TOS...

[Littlepaw]

Hello and Welcome Shrug-Dealer,

I am sorry you are dealing with so much discomfort and uncertainty.

Have you had any sort of PT consult or chiropractic?

Cold hands and feet are common side effects of many blood pressure medications in case that started after your BP meds.

Search and FAQ are found at the top of every page to help look for specific topics and answer common forum usage questions.

I hope you get relief and answers soon.

[shrug_dealer]

Originally Posted by Littlepaw

Hello and Welcome Shrug-Dealer,

I am sorry you are dealing with so much discomfort and uncertainty.

Have you had any sort of PT consult or chiropractic?

Cold hands and feet are common side effects of many blood pressure medications in case that started after your BP meds.

Search and FAQ are found at the top of every page to help look for specific topics and answer common forum usage questions.

I hope you get relief and answers soon.

I have my mri tomorrow morning. It probably will come back normal, i don't feel as though this is a problem with my brain per se, still holding out hope that SOMETHING will show up to at least shed a little bit of light on the matter.

I also have an ophthalmology follow up on monday.

[bigkizza]

Originally Posted by penguinsfan7

Law76.

You should feel pretty honored, TOS is not very common so embrace it!! It's one hell of a story to tell people.

Embrace it are you crazy? How many people haven't recovered as well as you or not at all? Im at the point I might lose my job, which I worked dam hard to get and have nothing to fall back on, not counting the $1000's spent on physios and chiros. I wouldn't wish TOS on anyone.