I have been diagnosed with NEUROGENIC TOS by a hand (upper extremity surgeon), and this was also confirmed by Dr. Togut, who is a TOS specialist. I do not know what to do. My neurosergeon stills says i do not have TOS because I do not have a 5th cervical rib, and the TOS does not show up on my EMG.
I have moderate to severe disc disease from C3 down to C8, and i have had a fusion of C5, C6, that only made things worse, because the discs below and above the fusion level did not handle the weight of the titanium plate, causing disc deformities and other problems. My EMG however is negative for cervical radiculopathy. The EMG does say that i have moderate to severe carpal tunnel on the left hand, and nothing showed on my right hand.

I am confused cause this pain goes all the way down both arms. The pain is better somewhat when i am sitting with my arms propped up on pillows. I can not do anything overhead, or reaching because the pain intensifies with this. The pain is in my neck, both sides, shoulder and shoulder blades (feels like a stabbing knife pain there), into my biceps, forearms and hands, there is pain in numbness in my right thumb, index, and, middle finger, with pain in the ring and pinky. My right hand has pain in all 5 fingers, most of the pain is in the ring and pinky finger on that hand. There is bad pain in the elbows, and forearms on both arms, but this is worse on left.
There is a grateing of bone on bone noise when i move my shoulders/shoulder blades. There are crunching noises in my neck. There is underarm pain on both sides, sometimes are worst than others with that. There is always pain at the area just below my clavicle bone, in my upper chest, on both sides. It hurts to palpate those areas. There is a feeling of pressure on the chest, feels like i just did a bunch of chest presses.

I am not sure if this is pectoralis minor syndrome or not. My shoulders seem to not want to stay BACK but roll forward.
I am wondering is that is a brace available for this. My both arms are always SO tired, ALL the time. IT is a struggle for me to do anything. I am so depressed over this.

I am trying to get disability but i do not know if i will get it being that the opinion of my neurosergeon is that i dont have it cause i do not have a fifth cervial rib, and the EMG does not confirm TOS. I have been in pain management for this, and i am taking Percocet, Tizanidine (at night), flexeril (day), Ibuprofen, Tramadol, and a new drug called Savella. Lyrica and Celebrex r not covered by my insurance.

I do not think my pain management doctor is going to keep treating me with drugs, because he keeps saying that living on these is not the answer and it is not fixing the root of the problem. I was advised by the two doctors that say i have TOS not to have the surgery due to the risks involved. I do not know why, but doctors don't seem to take this disease seriously. Dr. Toguts, evaluation reports says that as this disease progresses that stronger narcotics will be needed. I am depressed because I know my pain management will not want to do that, plus I don't even think he intends on treating me long term. The pain is so bad i feel like killing myself most days. Martina

Me again, i am also taking Gabapentin (neurotin), which I am at the max with 800mg three times a day. I have also been told by a physical therapist at the gym i went to a few years ago that my one shoulder is higher than the other. I had no problems at that time, and thought nothing of it. This all started in Nov. 2008.

That neuro doesn't really know about TOS, so I'd search out another one that actually knows more about it.
gosh if we can find the medical documents about it online why can't some of these drs do a bit of homework!

Quite a few of us have uneven shoulders. could be various reasons why though.

Did you have any accidents or anything to cause your TOS?
It could be related to the neck surgery or even positioning during surgery.

I don't know if you have read info on double crush & triple crush syndrome of TOS. TOS + ulnar + carpal
I used to have the rice crispies in the neck sounds...woke me up a lot..

If arm pits are tender & puffy - that could be due to clogged lymph nodes - lymph massage might help. you can look up videos online for how to do it.

sounds like you might be having some spasms - a good advanced therapist can help with that. most times.
unless the nerves are what is sending the signals to the muscles to spasm.

there are braces (find online) and kinesio tape - good PT can help with those also.

To get disability you need a dr that knows the limitations of your condition.
See our SSDI & SSI forum for help & tips on that.

Have you had any really good PT, any at all????
like PT that is focused on pain relief & reducing the spasms first - before moving on to any sort of exercises or strengthening?
- massage, ultrasound, TENS or other IF stim, low level laser therapy, manual trigger point work or injections, posture & body work...

[[Flexeril (Cyclobenzaprine)
Cyclobenzaprine, a muscle relaxant, is used with rest, physical therapy, and other measures to relax muscles and relieve pain and discomfort caused by strains, sprains, and other muscle injuries.]]

I don't see any anti depressant in your meds list - many with severe pain will have that also as it can help the pain med be more effective.


Your case is more complicated due to the neck issues, but a team of really pros -Drs, PTs and other care providers- should be able to help you.

Finding the good ones is the key.


How long ago did the TOS sx start? oh never mind - 2008??.
Where does the fusion fit into that time table? before /after?

Click my name and go to my profile album for some basic stretch things to try.

it could very well be pec minor syndrome. i had the sameeeeeeeeeee thing my shoulers are forward and my minor was so tight that i had an aneurism forming. i had mine realeased oct 1 i have pics in one of my fourms. unforutantely 2 months later i had a rib resection anterior scalenectomy. lol maybe you will be so lucky jsut to have it released

The TOS symptoms started about november of 2008, at that time i also had an MRI of my C-spine, and the neurosergeon told me the neck pain and arm symptoms, which at that time my arm pain only went to my bicep level on both arms, were coming from the c5-c6 disc being bad, and that i needed a fusion at that level. After the surgery i still had the neck pain and the pain down the arms was worse and went further down my both arms and into my hands, not just to the bicep level, and i had numbness in fingers now. I have tried injections, physical therapy, ultrasound, TENS, injections, massage, accupunture, posture and body work. I am trying to find a type of brace to help with the posture and help keep my shoulders back and give me upper back support. The only thing that i could think of that might have triggered this was a free weight class i used to take at the gym, doing chest press and overhead movements with free weights, among other movements with free weights. I have been on different muscle relaxants, flexeril, tizanadin, methacarbamol. I like flexeril during the day, cause i can take it and not be groggy, unlike with the tizanadine, I take one of those and I am in out in 10 minutes. I was on antidepressents before when my symptoms first started, but with all my other medical appointments , I stoppend going to the psych appointments, and didnt keep myself on the antideppresent. I have an appointment in a couple weeks for a psych evaluation, and i will be put back on something again no doubt. I need something that does not interact with the other medicines i take. Hot tubs help alot with me, but i dont get to be in one often.. Martina

What type of doctor did u go to that diagnosed the pectoralis minor syndrome?? Mine hurts right under the front of my shoulder, under the collar bone area, kind of right next to the armpit. I was thinking that surgery might help with me as well. What testing is done to determine it is pec minor syndrome? Martina

you can find older posts on pec minor syndrome by using the forum search tool

http://neurotalk.psychcentral.com/search.php

Hi.
About the aneurysm that was forming. How do u know when u have an aneurism forming there? Just wondering cause the area of my pectoralis minor and under my arms hurt so bad. Martina

Loss of muscle tone is a big culprit, but exersise is out of the question. Your doctor may be willing to give you MS Contin rather than the pill that makes you a criminal. I take Gabapentin 600 x4 and it helps with radiatiing pain. I also have a disc pushing on my spinal cord. I spend many nights sleeping in a chair. Does your hurting arm somtimes make you hand feel on fire? I will not get surgery until the last possible moment. Bacoflen is a good muscle relaxent at night and 4 x 60mg MS Contin plus 4 x 10/325 breakthrough Percocet seem to work well. I have to do any computer work right after medicating; It even hurts to read a book and driving will cause bad flare ups. You cant take Celebrex for 3 or more years. Celebrex did not bother me at first but the Doc took me off before it caused ulcers. With regard to the shoulder pain you may have Bursitus and need a shot in the Bursa sacks. I also get big time shots in my cervical spine at least 2 times a year. They knock me out for a little while 10min and shoot in cortisone or some kiind of steroid. It sometimes takes 2 or 3 rounds of shots to get things going, but they work. Good luck ! And go to a "Pain Management Specialist" that takes insurance. No cash "Pill Mills".

Martina,

Similar to you, I have fusion of C5-C6-C7 with adjacent disc compression. The EMG test cannot diagnose TOS, only rule out other causes. My wife is a physician. In medical school, she learned only about the extra cervical rib in regards to vascular TOS...nothing else. With all due respect, your neurosurgeon doesn't know what he's talking about in regards to TOS past what was required to pass the board exam. My neurosurgeon and neurologist went above and beyond (EMG and 3T MRI of full spine and brain) to make sure my remaining symptoms were not coming from my spine, then advised me to see a vascular surgeon with TOS experience. Definitely seek out a vascular surgeon with experience with TOS.

You are definitely heavily medicated in regards to pain management. Seems like a fibromyalgia treatment. I'm surprised you are not on Neurontin, since Lyrica is not covered by your insurer. May be worth a question to your doc.

The miracle drug for me has been Toradol. Toradol is a powerful NSAID similar to high-dose Motrin. A 3-5 day course of Toradol returns me to normalcy. It used to clear things up for me as long as 2 months. Now everything comes back a day or two after I stop the Toradol which is a reason I believe it is time for me to explore surgical options (you cannot take Toradol on an extended basis). Can't hurt to ask your doc about it.

My advice would be continue with your TOS specialist and find a few other vascular TOS guys to get additional opinions. You really don't need the neurosurgeon anymore if you are fully fused and your films and EMG are normal. It may be worth consulting another pain management doc for a second opinion on your meds as well.