Hi,

I'm a new member who has browsed these boards for the last 14 months but not posted. I've noticed that folks that remain with pain or complications are primarily the ones who continue to contribute. I'm guessing that many with positive outcomes no longer have a reason to visit here. I want to use this thread to chronicle my own journey and hopefully a return to normalcy.

I grew up in Southern California but attended college in Alabama as well as my first job after college. After 10+ years, I moved back SoCal at the end of 2005. A few weeks before moving I had a low speed accident where I rear ended a truck that had stopped abruptly while I was distracted. I did not believe I had any injury. My new job I worked from a home office but I did a lot of driving and flying to cover my new sales territory. As an engineer I was also carrying 50 lb demo kit in addition to my laptop and luggage. I was working solely from a laptop. Hunching over it in airports, airplanes, and working on the couch.

In 2007 I knew something was wrong. I had always been active and played basketball for the college team. I noticed that I didn't have my normal strength when I rebounded or tried a layup when my arm was somewhat behind my head. I had random shooting pains in my shoulders. My primary care doc sub-specializes in sports medicine. He MRI'd my shoulders and determined it was just rotator cuff tendonitis/bursitis and sent me to PT. The therapist only made me worse. I sneezed in the shower and went to the floor with pain shooting from my trapezius down the scapula and I could barely get up. My doc gave me a Medrol Dosepak and that seemed to clear everything up for a month or so. I never went back to that therapist. When the pain returned, it seemed to be centered in the upper trapezius on both sides. Celebrex seemed to help matters but each time I noticed improvement I would shortly regress further.

In 2008 I married a medical student. By 2009 things had gotten so bad she insisted I see a neurologist. I started seeing Dr. Vernon Williams though Kerlan-Jobe in Anaheim. He sent me for an MRI of the C-Spine. The MRI showed Cervical Stenosis (congenitally small spinal canal) w/Degenerative Disc Disease. When a Cervical Epidural Injection offered no relief Dr. Williams stated he suspected TOS as well. He prescribed PT for me along with a S3 brace by Alignmed. He sent me for MRI of the Brachial Plexus. The day of the MRI an unlicensed driver ran a red light and broadsided me. Luckily, I was able to brake and she hit my driver side front wheel instead of the door. She went to the hospital and I walked home. However, a few days later my left subclavius was noticeably inflamed and my symptoms were getting worse. I was given another Medrol Dosepak and the S3 brace. The S3 brace seemed to immediately eliminate my symptoms.

I returned to PT as the S3 brace was far too hot and cumbersome for me to wear to work or bed. The therapist insisted I not wear it to therapy even though I was in pain without it. My symptoms went right back downhill and the S3 brace was not longer effective. I quit therapy again. Dr. Williams performed a scalene block on the left side right before Xmas of 2010. I had a negative reaction to the block and formed huge knots at the injection sites. I was unable to get in contact with Dr. Williams. Kerlan-Jobe told me the earliest appointment was in 6 weeks. I left a message for the nurse but my call was not returned. After this, my wife did not want me to return to Dr. Williams.

My symptoms started going downhill fast! All of my pain had been in my shoulders, traps, and scalenes near the shoulder. I now had neck pain that seemed to be coming directly from my C-Spine. I was taking Hydrocodone every 6 hours to function. I also started having a fibromyalgia type reaction to any sort of pressure and could not sit and watch TV for more than 15 minutes or stand to have my wife rest her arm on me in bed. We figured that since the scalene block had not worked that there was no TOS. I found a new neurologist and neurosurgeon who ordered an EMG. I ended up having ACDF surgery C5-C6-C7 2/28/11.

Immediately after ACDF the fibromyalgia type symptoms were gone. I felt great 3 weeks after surgery and planned to return to work. That 4th week the scalene tension returned in full force and I felt pain from the surgical site. They gave me a 5-day course of Toradol and I was feeling good again. I returned to work and PT and continually improved. The scalene tension kept returning every 2-3 months. A cervical facet block injection seemed to do the trick on 2 separate occasions.

In December 2011 the scalene tension was back along with the SCMs (Sternocleidomastoid), along with a new symptom: Cervogenic headache. Trigger point injections would relieve things only for a day or two. Massage would help but only for a day. They sent me back for new MRIs of the C-Spine and brain. No problems with the fusion, but still headache. Back to Toradol, headache disappears but returns immediately after Toradol 5-days ends. I go on another 5-day course but headache returns again. Headache is now getting worse and includes occipital neuralgia. Occipital block trigger point injections w/steroid help but now headache seems to have intensified below the block.

By February I start to notice my hands are cold and numb. I start to have problems opening water bottles and jars which my wife opens with ease. We go back to the neurologist and we are all thinking TOS!!! I try to wear the S3 brace to see if it helps but only a little and just too annoying. I ordered a garment from Intellishirt since alignmed never responded to my inquires regarding their postureshirt. I had ordered the wrong size, but luckily they are in Newport Beach and let me exchange that afternoon. Upon wearing the garment I immediately feel a reduction in hand pain & numbness. My grip strength returned back to normal and my headache decreased. I start researching Vascular Surgeons with TOS experience immediately.

We were able to see Dr. Gelabert 2/29/12. We liked him very much. Surgeons are often very clinical with little personality...often jerks, but not Dr. G. We never felt rushed and he wanted to hear every detail of my history. He states that his physical exam of me supports TOS, vascular symptoms appear more evident than neorogenic. He did the exam with my Intellishirt on as it only gives postural reminding rather than extreme correction. He told us that the failed scalene block doesn't rule out TOS (too bad follow up with Vernon Williams never occurred). He wants the scalene block repeated as well as SSEP testing. He recommended we see Dr. Sheldon Jordan but gives us the caveat that he is cash only. He gives us a good amount of reference information and contacts for TOS. He also made a referal for us to get a scalene block and SSEP test at UCLA since they take just about any insurance. I have decided that seeing Sheldon Jordan at least once will be worth the out of pocket expense.

Dr. G also spoke of Dr. Ahn and spoke freely about differences in philosophy. By my recollection, Dr. G does everything transaxially while Ahn will go in both transaxially and supraclavicularly in some cases. I had not read johannakat's "How I chose my surgeon thread" yet so I did not ask about the supraclavicular approach being needed for complete scalnectomy and a potential 2nd set of surgeries being needed down the road when just supraclavicular approach is taken. I will definitely ask at my next appointment.

I meant "....when just transaxial approach is taken" above.

I saw my neurogurgeon, Dr. Ty (BASICSPINE) on 3/1/12. He was familiar with 1st rib resection and scalenectomy. He said that the fact that the intellishirt provides a measureable and immediately noticeable effect on symptoms that I should not give up on conservative treatment just yet. He referred me for an eval by a chiropractor, Dr. William Leach who he thought may be able to help. Apparently he utilizes the Pettibon system for posture correction (I've never heard of it), a search here returned no results. I'm a bit skeptical, but I'm desperate at this point.

In the afternoon of 3/1/12 I visited the clinic at the (UC Irvine) Susan Samueli Center for Integrative Medicine for a therapeutic massage. Melissa Ricker is a massage therapist with experience in successfully treating TOS. After just one session I have to say she is amazing. She was able to eliminate the pain & numbness in both hands. My neck was like a brick, and my headache did not improve. She said she would try and help more with the headache next visit. If you are in Orange County, you need to look her up. She's easily the best massage therapist I've encountered. She gave me hope that the chiro along with massage therapy can allow me to work.

My hopes were dashed 3/2/12 when the headache spread to the front of my face around the eyes and mouth. I went straight to the neurologist and I went downhill right in the office. My lips were numb, my face hurt, and I was losing my voice. He sent me to Hoag Hospital for an emergency workup to make sure there wasn't something wrong in the c-spine. They did MRI of the c-spine and brain and there were no problems. The neuro allowed me to come in Saturday for trigger point injections to give me some relief. I'm taking more hydrocodone now and my hand pain is returning in force. I'm unable to drive and I'm starting to believe that surgery is inevitable.

I am going to try and see Dr. Sheldon Jordan and Dr. Ahn as soon as possible. I would like to go see Dr. Brantigan but I'm sure I don't want to have surgery out of state. I think it will either be Gelabert or Ahn. I will keep this thread updated as I progress.

I wanted to welcome you to Neuro Talk. This site should help you while you address all the issues pertaining to TOS. I have major cervical issues myself, so I do understand the suffering you are going through. There will be others that have the condition, who can address some of your issues. I hope that while you seach for answers, that you keep track of all this that you've gone through in writing. No matter who you see, they will appreciate the effort you took to document your case. I hope a permanent solution can be found for you, where you have a better quality of life. Again, I am glad you found Neuro Talk, this site has helped me to cope better with all my medical conditions. You will make a few friends along the way. take care, ginnie

I have posted here since approx. 2004-

I have neurogenic vascular TOS, which then prompted RSD, bedridden, Right sided surgery after long attempts to get work comp hearings, but surgery in Denver (flew myself out first after denial from work comp and got two great reports that I needed surgery.)

My doc for surgery was Dr. Annest. He was very professional and competent, and honest - he said he may only get 10% better due to long wait for surgery. But what happened was the TOS slowed down extremely, and then, the RSD left for an entire year.

I believe there is a very big difference between men and women in surgery outcomes, how they got TOS and how the TOS reacts.[/U]

TOS has many flavors - try the advanced search for threads on many symptoms, or main 5 symptoms. My TOS testing thread is complete and tells you all I know about TOS.

Now I fight after work comp judgment - you must not quit or give in. See as many free consults as possible.

I will never work again. I am lucky to have nurses, stable mate, good doctors...I can't write to everyone - I'll hurt for weeks.

But my love and prayers go to all.

Did you mean Intelliskin? Is it this place? http://www.intelliskin.net/

That is correct...sorry for the confusion. I had another flaring episode tonight after I showered...then I realized I hadn't put back on my Intellliskin. I started feeling better immediately after putting it on. I'm going to buy a third shirt as I am wearing them 24/7 now, and having to wash constantly.

I wonder if I had worn the Intelliskin regularly when I was still feeling good if I would still be in the condition I'm in now?

Now that my pain is a little more under control I have noticed that my left side has worsened. Left arm is heavy and grip strength is weakening.

Dr. Fish's office at UCLA still has not contacted me for an appointment for SSEP and scalene block as referred by Gelabert (Dr. G gave me the referral he faxed over and had his assistant call them. I have decided to skip Dr. Jordan and Dr. Fish for now and go see Dr. Ahn.

Dr. Ahn's office has scheduled me for tomorrow morning. Dr. Ahn apparently does the same Ultrasound and scalene-pecminor-subclavius block procedures that Dr. Jordan does, and is covered under my insurance.

I'm looking forward to the appointment and will hopefully gets some relief and answers.

Thanks. Which of the products are you using? http://shop.intelliskin.net/