[Ollyingles]

Originally Posted by MagicMom

I still don't understand what is wrong with me, how or why it happened, and why nothing has really helped. I just want to get out of pain and back to a normal life. Before the accident I had forearm pain. Then, I had a minor rear-end car accident a little over 2 years ago, upon which I think I had whiplash...I think I had a muscle spasm in my neck and trigger point ache in my upper shoulder blade. I immediately went to a chiropractor because I didn't want this to turn into anything major. I would feel better after he cracked my neck. I do work at a computer and am stressed out all day long. By the end of a workday, I would be in agony. Over time, this new pain became unbearable, but at least the forearm pain mainly went away. I had 6 months of chiropractor and physical therapy in the first year that helped me make it through the day, but my symptoms got progressively worse. That was followed by 6 months of mainly massage therapy, with tens and ultrasound but I kept getting worse. I brought up TOS to my doctor, but he told me that was very rare and unlikely, and shot me down. Finally I felt like my doctor was taking me seriously when was told I had a herniated disk. I thought that was the answer and had ACDF C4-6 about a year after the accident which relieved the pinching in my neck, but I think worsened all the brachial plexus problems. After that, I developed a deep aching pain my my shoulder and a tender spot on the nerves and muscles in the front of my neck. Also, the nails of my thumb and first two fingertips turn blue throughout the day, and these fingers are constantly numb (although I still have feeling - it's a hard sensation to explain). I had shoulder arthoscoscopy a year and a half after the accident to shave a bone and clean out the bursitis, which got rid of one spot of pain under my armpit, but gave me other aches and pain. Then I researched some more on the internet, went to see a vascular surgeon, and was diagnosed with Thoracic Outlet Syndrome because my hand went white in a few seconds after lifting it, and my vascular ultrasound showed compression. I had a first rib resection and scalenectomy 4 months ago, which got rid of the worst aching pain I had in the grove between by tricep and deltoid. However, this left me with tons of inflamation, scar tissue, adhesions, new aches and tender spots, and I crack every time I move. I can flick the nerve in my arms like guitar strings, and a nerve and or muscle keeps getting caught and sending shock waves down my arm. I had more physical therapy which has done nothing except help me make it through the day and get a little stronger. A month after the TOS surgery, out of the blue I couldn't lift my arm and was told that I had axillary nerve dysfunction and that my deltoid wasn't working properly. Most function has come back, although nowhere near normal, but I was told that my other muscles are compensating. My medicine (Lyrica, Tizanidine, Nabumetone, Tramadol) just takes the edge off the ache, but if I don't take it, I'm in agony. I still work full time (primary breadwinner), and am a wife and mother of a young child. I don't know how I make it thought the day, other than I have no choice, because if I don't go to work and bring home a paycheck, I lose everything, and I would still be in pain. Being a woman in my thirties, I think people think I'm a hypochondriac because they can't see anything physically wrong with me. It's not like I have cancer or am dying from a serious disease. I think my husband thinks its all in my head and I just need to stop thinking about being in pain and just deal with it. I don't know what to do or how to handle this anymore. Does anyone see a pain management psychiatrist? And is there anything left I can do? If there is anything else I can do or a doctor I can see who can fix me, I'm not ready to give up yet. At the same time, the auto insurance just cut me off and I don't have enough money to pay for my co-pays for medication, pt and doctor appts. without putting it on my husband's credit card and racking up debt.

Hi all.

I am a 20 year old female who used to work at a child development center. About 1 year ago, I started to notice I had random "flares" of sharp pain in the left shoulder blade. When I took a breath, the pain was unbearable. As time went by, a lump on my first rib appeared. Its sore, if not hurting, i feel a dull discomfort. My pain in in my neck on the left side, under my armpit, my left shoulder and shoulder blade as well as the chest area of where the lump is. Its driving me crazy. I cry from pain and exhaustion from this. I know how you guys feel. I have seen many doctors. A lot said Im just depressed because I lost my step father recently from cancer. I know its the the case because I had this going on before he passed away! I have had:

3 ultra sounds (one, the first doc noticed the sub arteries and such show up and thought it was a bit weird. He is the one who said all he could suspect is TOS but not sure, He was supposed to refer me to a diff specialist. He forgot I think because he was in a big rush) I brought it up to my primary doc, he didnt think so....
I had an MRI for rotator cuff.. nothing.
blood tests.. I am anemic and low on vit D. my thyroid is in the normal range but lower end.
many X-rays.

I dont know what to do.. I would consider surgery but as I read from many of you, its kind of risky.

I hope you guys continue this website. Im desperste to talk to people. I dont know for sure if this is TOS but today Im seeing a "breast cancer"/general surgery clinic.. Ill tell them what I think and ask for a different referal. I hope you guys are doing okay.

Magicmom, Im sorry for your pain. I understand and Im not sure what is could be.. I think I will ask the docs today if they are even the rite ones and I'll post to tell you what they told me.

Take care all. Email me if you wanna talk
****

[fdupshoulders]

Had it for 20 months and has been getting progressively worse, took this long to figure it out..

[thissucks]

Six months ago I started to notice my left arm falling asleep at work. (I'm an electrician at an rv company) then I was waking up in the night with all kind of pain in my arm and my last two fingers. I turned in a injury report at work since i noticed it getting worse and was feeling it in different areas, such as my arm pit, my collarbone, shoulder, neck. and my arm and hand get so tired. I was diagnosed with TOS finally after 5 doctors and two rounds of physical therapy. Im at a loss. The newest doctor said surgerry wont help, but Im wondering how much more I can take. Im in some kind of pain from it all the time. Im starting to feel it in my face by my ear and getting real bad headaches. I dont have the extra rib but would surgery help? Im starting a third round of therapy this week and if it dont help I dont know what will be left for me. The work comp might just release me then Im screwed.

[MH Advocate]

Good morning everyone:
I have been diagnosed with thoracic outlet syndrome (right side) with radiating pain to the left side, upper back and lower back as a result of a Whiplash injury of the neck (with branch nerve injury, disc c4-c5) as a result of a car accident where I was hit from behind with significant force. I also am diagnosed with dysphagia and neurophatic pain. I injured my Larynx and Esophagus in the same area of the neck.

I am the perfect recipe for disaster:
1) I am in my mid 40's
2) I am a woman
3) the impact was with significant force (70 km/h)
4) I stopped due to a car stopped in front of me, both hands on the wheel, my head looking at my left side mirrors when the impact happened.
5) I am intolerant to opiates and painkillers

I had to wear 8 weeks of physiotherapy tapes
I had to go to physio 2 a week for the first year, 1 a week for the second year, 3 times a month for the third year.

My condition plateaud when 6 months after the accident and I have never improved

I have 3 types of pain
1) Nerve pain
2) disc pain
3) soft tissue pain (horrible stifness in my neck, shoulders, upper back, center of my back down my spine to my lower back, 24/7

Treatment:
I have been treated with Lyrica (stopped using too drowsy)
t3'S (down to one a day due to intolerance)
Flexerel to relax the muscles at night, thus to be able to sleep
Nabilone which is synthetic THC and works wonders to help relax my core.


In the past 6 months I have experienced increased sadness and awareness of my condition.

Although I went to hundreds of physios, massage therapy and excercise daily and eat healthy, I am still suffering from the TOS which is horrible pain

I am affraid of reinjuring myself by accident due to the siliest things could exacerbate my pain or flare up
the weather makes it worse if its foggy or rainy and cold.

The sun if is too hot makes it worse

relief: Pain clinic shots (steroids, topical) , physio, meds (OC)

makes it worse: physical activity such gardening, sweep like movements with my right hand, computer work, stress, weather, and so on..

is there anything else I could do to get help?

[nospam]

Originally Posted by MH Advocate

Treatment:
I have been treated with Lyrica (stopped using too drowsy)
t3'S (down to one a day due to intolerance)
Flexerel to relax the muscles at night, thus to be able to sleep
Nabilone which is synthetic THC and works wonders to help relax my core.


In the past 6 months I have experienced increased sadness and awareness of my condition.

Although I went to hundreds of physios, massage therapy and excercise daily and eat healthy, I am still suffering from the TOS which is horrible pain

I am affraid of reinjuring myself by accident due to the siliest things could exacerbate my pain or flare up
the weather makes it worse if its foggy or rainy and cold.

The sun if is too hot makes it worse

relief: Pain clinic shots (steroids, topical) , physio, meds (OC)

makes it worse: physical activity such gardening, sweep like movements with my right hand, computer work, stress, weather, and so on..

is there anything else I could do to get help?

I had relief with Lyrica but side effects. Neurontin (Gabapentin) has given me similar relief without side effects.

Cymbalta is another drug that can help although I had side effects. I now take Pamelor (Nortripyline). Elavil (Amitriptyline) is another drug (but older) in the same family. These are antidepressents that have been found to treat pain as well. They could also help your mood.

Flexeril worked for me a while but eventually I built up a tolerance to just about every muscle relaxer out there. The anxialitic drugs seem to be more effective: Valium, Ativan, etc (I'm on Valium).

If physical therapy makes you worse, stop. Don't do exercises that aggravate you. Don't be afraid to find another therapist, one experienced in treating TOS. http://neurotalk.psychcentral.com/sh...d.php?t=172617

[MH Advocate]

Originally Posted by nospam

I had relief with Lyrica but side effects. Neurontin (Gabapentin) has given me similar relief without side effects.

Cymbalta is another drug that can help although I had side effects. I now take Pamelor (Nortripyline). Elavil (Amitriptyline) is another drug (but older) in the same family. These are antidepressents that have been found to treat pain as well. They could also help your mood.

Flexeril worked for me a while but eventually I built up a tolerance to just about every muscle relaxer out there. The anxialitic drugs seem to be more effective: Valium, Ativan, etc (I'm on Valium).

If physical therapy makes you worse, stop. Don't do exercises that aggravate you. Don't be afraid to find another therapist, one experienced in treating TOS.

Thank you so much for your response.
I have never tried antidepressants in my life, but I am a mental health worker and I have seen some scary things on people taking antidepressants, so I avoid them at all cost, my mother sent me a bottle of Cell Food, I have been drinking 10 drops of oxygen, (cell food) daily and I have noticed an improvement in my breathing and colour (I am so pale, and I should not be) now even my eyes and face look healthier since adding liquid oxygen

my doctors have been proocupied ruling out everything else (thyrod, discarded, osteoporosis, discarded, all blood work and tests indicate that I am otherwise healty (not even a flu)
just the stupid pain that kills me soflty daily
the stiffness in my upper body and the shoulderblade/collarbone areas in pain 24/7,, I want to sleep for a month and wake up healed!

[Jomar]

It will help for others that might want to reply if our new members make a thread of their own.
Main TOS page with threads listed -
http://neurotalk.psychcentral.com/forum24.html

Post here if you need help making a new thread.
Our site FAQs with help on basic forum use & posting -
http://neurotalk.psychcentral.com/fa...b3_board_usage

[Jomar]

Originally Posted by Jo*mar

It will help for others that might want to reply if our new members make a thread of their own.
Main TOS page with threads listed -
http://neurotalk.psychcentral.com/forum24.html

Post here if you need help making a new thread.
Our site FAQs with help on basic forum use & posting -
http://neurotalk.psychcentral.com/fa...b3_board_usage

Bumping up for our newest members..

[twelveleaves]

35 yr old female living in the pacific northwest. I was just diagnosed with Bilateral Neurogenic Thoracic Outlet Syndrome with cervical ribs. I have had TOS for 13 yrs though. I saw one local vascular surgeon and he says he believes I need surgery. I am hesitant to get surgery and want to do more research. I am exploring the idea of flying to Boston to see Dr. Donahue for a second opinion. The pain and symptoms have increased and have gotten much worse in the past 7 months since I started working a job that requires computer (laptop) use. I have given my notice at work and am resigning due to my inability to perform my job. I am just eeking out these last few weeks and popping vicodin when I get home. There is no way I could keep this up. I feel like crying some days during work the pain is so bad. Driving is another huge trigger for me. Even just driving for a couple minutes causes a flare up. I plan on filing a claim with my short term disability insurance company as of my last day of work and this monthly $ should cover my COBRA payments. It will buy me some time to sort all this out and figure out if I should have surgery or not, how I feel after not working for some months straight, if not decide if I should apply for SSDI, etc etc.

It's crazy to think that this is my reality and that I will have to deal with this for the rest of my life. It's overwhelming at times and sad. Over the 13 yrs that I have been suffering from TOS (with no diagnosis until 2 weeks ago) I slowly had to give up activities....basketball, bowling, kayaking, backpacking, driving a stick shift, art, playing guitar, etc.

The acute pain has also taken a larger toll on my general health...fatigue, brain fog, disposition, etc.

In addition to NTOS I also have a congenital hereditary blood disorder that causes me to tire more easily than "normal" people, and I also have IBS (developed after having my gallbladder removed at age 21). A few doctors have also suspected I have fibromyalgia.

Thankfully I do know that if I don't drive, don't use a computer, hold a phone to my ear, lift heavy things, work, etc I feel much much better. I could live with not being able to work and not being able to do many of the things I once enjoyed in pre-NTOS but people keep telling me it would be a shame for someone so young to accept that fate. In other words they are saying I should have the surgery as if it will cure me. From what I have read I just don't know if this is the case. I do not want to start the cycle of surgery after surgery.

Advice gladly accepted!

[jkl626]

Originally Posted by twelveleaves

35 yr old female living in the pacific northwest. I was just diagnosed with Bilateral Neurogenic Thoracic Outlet Syndrome with cervical ribs. I have had TOS for 13 yrs though. I saw one local vascular surgeon and he says he believes I need surgery. I am hesitant to get surgery and want to do more research. I am exploring the idea of flying to Boston to see Dr. Donahue for a second opinion. The pain and symptoms have increased and have gotten much worse in the past 7 months since I started working a job that requires computer (laptop) use. I have given my notice at work and am resigning due to my inability to perform my job. I am just eeking out these last few weeks and popping vicodin when I get home. There is no way I could keep this up. I feel like crying some days during work the pain is so bad. Driving is another huge trigger for me. Even just driving for a couple minutes causes a flare up. I plan on filing a claim with my short term disability insurance company as of my last day of work and this monthly $ should cover my COBRA payments. It will buy me some time to sort all this out and figure out if I should have surgery or not, how I feel after not working for some months straight, if not decide if I should apply for SSDI, etc etc.

It's crazy to think that this is my reality and that I will have to deal with this for the rest of my life. It's overwhelming at times and sad. Over the 13 yrs that I have been suffering from TOS (with no diagnosis until 2 weeks ago) I slowly had to give up activities....basketball, bowling, kayaking, backpacking, driving a stick shift, art, playing guitar, etc.

The acute pain has also taken a larger toll on my general health...fatigue, brain fog, disposition, etc.

In addition to NTOS I also have a congenital hereditary blood disorder that causes me to tire more easily than "normal" people, and I also have IBS (developed after having my gallbladder removed at age 21). A few doctors have also suspected I have fibromyalgia.

Thankfully I do know that if I don't drive, don't use a computer, hold a phone to my ear, lift heavy things, work, etc I feel much much better. I could live with not being able to work and not being able to do many of the things I once enjoyed in pre-NTOS but people keep telling me it would be a shame for someone so young to accept that fate. In other words they are saying I should have the surgery as if it will cure me. From what I have read I just don't know if this is the case. I do not want to start the cycle of surgery after surgery.

Advice gladly accepted!

I have heard good things about Dr. Kai Johansen in Seattle. It might be worth a shot to see him first. also have you tried PT? That is always the first step. Also Trigger Point injections have helped me. Botox helps some people but it didnt help me.Good Luck.-JKL