New member - multiple surgeries, worse off, looking for the answer
 

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.

I'm sorry you are in such difficulty. Is there any way you can change to a less computer centric job? I had surgery and was worse as a result. I never returned to work as an attorney (or anything for that matter).

There is no way I could have worked at a computer all day, four months after TOS surgery. I can't even sit at the computer, just reading the screen, without making myself, to say nothing of typing and mousing.

I don't have a magic bullet for the pain. There is no medication or therapy that has dealt with it. The meds just take the edge off. I can only suggest really modifying your activity -- and I know that is not financially feasible for most people.

Good luck.

Kelly

I hope there is some way for you to opt-in for long term disability insurance. I used to decline this coverage but when I switched employers they made it a mandatory/taxable benefit. Thank God for this.

Good physical therapy is vital to proper recovery. I would try and see CMFT if you have one nearby. Check this list: http://www.instituteofphysicalart.com/ipa/referral/list

Surgery
 

Don't worry about the medical bills. Your health is more important. I would just not pay them if you are unable. The hospitals will generally sell the debt to someone and after three years it will disappear from your credit record. Please see Dr. Bernardo Martinez in Toledo, Ohio. He is a specialist with TOS. He may be able to re-route some of the nerves and lessen the pain. If he is too far, then Dr. Daniel Clair at the Cleveland Clinic could probably help as well. It sounds to me like you have nerve issues that need surgery. I had three hernia surgeries, because of nerve trouble, so it can take more than one surgery to fix these things.

Frank

I NO LONGER RECOMMEND Dr. Daniel Clair. He is not the best in the area to see. Dr. Bernardo Martinez in Toledo, OH is far better. Drive the extra two hours to see him instead. I am having another surgery to fix the incomplete one done by Dr. Clair.

-Frank (07/23/16)

My Heart Goes Out to You!
 

Hi, Magic Mom! I am so sorry for what has happened to you and the pain that it has caused. If you can find a pain psychologist (this requires a special certification in pain management, I believe), you might find it helpful in dealing with all of the losses and limitations being in pain 24/7 can bring. It is vital when dealing with the diagnosis and treatment of TOS that you seek the care of a top specialist in this complex and controversial area of medicine. Dr. Dean Donahue at MGH is very skilled at doing re operations to correct recurrent symptoms and complications from a first TOS surgery (usually a first rib resection with a partial scalenectomy) that has failed. Dr. Lum at Johns Hopkins is also very good... although I'm not sure how many re ops he has performed. The other important thing is that you receive PT from a manual physical therapist who is knowledgeable and experienced in the treatment of TOS. Suparna Damany (who's practice I think is in Allentown, PA) co-wrote a book on PT for TOS; I believe the title is "It's Not Carpal Tunnel Syndrome"; another talented PT and author is Sharon Butler. Please check out the "stickies" at the top of the TOS forum - you will find a great deal of useful information and medical literature on TOS captured there. There is a pain management specialist named Dr. Schwartzmann who has helped many TOSers in your state. Also a guy named Dr. Neil Friedman, DO is the best person to see for EMG, NCV studies, etc. - He is located in Blue Bell, PA. I'm sure a Google search will turn up their websites and more about their medical and PT practices. I hope you find help soon, as I know from personal experience how debilitating this kind of thing can be. Getting misdiagnosed with other disorders before finding the true cause of compression is actually vascular or neurogenic TOS, unfortunately, is not uncommon. TOS is not as rare as doctors who are not that familiar with it may think, but it can be difficult to diagnose and some forms are resistant to treatment. I wish you the best of luck. Knowledge is power, Magic Mom, and there is help out there. Please stay close and keep posting any questions and concerns. We are here to support you in any way that we can. Hang in there! Alison