I decided to start my own thread since my comments are all over the place. I will be pasting some of the older ones to save my arm and trying not to write to much at one time. Hopefully I can help others by documenting my journery like NoSpam has done. I also have a huge library of research,unfortunaltely i cannot post alot of the pdf's but will do what I can.

I have always been a persistent person and refuse to give in to the inevitability of pain. So it is no surprise that I have/am seeing all the dr's in L.A. and soon to possibly go out of town. I am an designer, I draw for a living and I havent been albe to work for almos a year. I was used to working 10 hour days at the drafting table and I'm sure this contributed to my TOS.

As of this week, I am starting to look at Surgeons as I dont think i will be able to go back to work without it.I may be able to try to do a slightly different thing within my field but it will not be easy. My health Insurance, Family stability,Pension etc are all tied up in my job, I am willing to try anything to get better.Th good thing about what I do is I can freelance, and dont have to work all year long, but the hours are usually long.

About a year and 1/2 ago I started feeling pain in my right arm while working. I did acupuncture and it helped for awhile. Then I started getting sharp scalpular pain and was having trouble working . Last April I finally went to my Primary Care Dr. who sent me to PT. It wasnt helping and I could hardley finish the job I was on. II went back to the GP and insisted on an x-ray and a specialist . She sent me to an Orthpedidt who sent me for an MRI. The dignosis was C-5-6 Spinal Stenosis,moderate bulge Osteophytes,and Degenrative disc disease.He gave me Trigger pt injections, Medrol Dose pack and PT perscription and a nerve test.

Around September my Orthopedist mentioned possible TOS because of the numbness in my pinkie. I had never heard of it and immediatley googled it and said to myself thats me! I went to 3 different Neurosurgeons who recommended disc surgery but said I didnt have TOS.

Finally I decided in the New Year, after nothing was working, traction and exercises were making it worse. I was ready to have a spinal epidural or go for the surgery when I saw an ad in the newspaper that Kerlan Jobe was having. Something caught my eye. Dr. Williams and Dr. Dillon (spinal surgery) were talking about how common it is to misdiagnose disc problems
and something hit a nerve(no pun intended)

March- December 2011

1 GP
1 Orthopedist/Pain doctor
2 Acupunturists
2 Physical Therapists
2 Chiropractors-Both supposedly the best. (I spent about 4,000 on one who is a spine specialist)
1 Pilates
3 Neurosurgeons who recommended disc surgery and said I didnt have TOS.

What is Pilates doing for you? I would think it would be very aggravating to TOS. I've had to give it up since surgery, but then again, I no longer have pain or symptoms, so I accept the tradeoff, no problem.

I had to give it up too. .I was doing the mat one. I love it because it was with friends and outside but It was making things worse. My PT recommends trying the machine one when I am ready to stregtnhen my core. She said you can do gentle stretches with it. Some of the PT's have them so at some pt I want try it again.

Will you be able to do it eventually? I am happy to hear you are pain free.

I decided to try the Neural Prolotherapy with Dr. A since it is less invasive than the other injections. It is a diagnostic and she said I will know in 20 min if it works. If not she may give me more TRP injections. The Botox is wearing off. The nerve pain is coming back and my arm muscles are jumping around.

I go today at 3 pm Wish me luck! And I am a person who has always hated needles. At least this writing has been keeping me occupied today so I dont get too nervous.

Good luck today. I'm sorry to hear you've been going from specialist to specialist. Unfortunately, many of us have had the same experience. Trust your gut.

I had surgery 7 years ago which made me worse. But even before the surgery, my surgeon made it clear that I probably couldn't return to the work (attorney) that caused the problems in the first place. Think realistically about whether you can return to the same kind of work. Re-injury is too easy and too common.

Take care,
Kelly

I certainly hope so, but I'm under strict orders from Dr. Donahue to take it easy. It took 30-something years to build up the scar tissue and adhesions, I need to lie low for the next year.

Good luck to you, I'll be watching to see how you're doing! Nothing makes me feel stronger than Pilates, but I just don't want to risk the improvements I've made. No pain is hard to argue with! (I draw, though indirectly for a living, also!)

Limoges,

When I hear your posts I am always excited and encouraged about my up and coming tos surgery with. Dr. Donahue. You have had such positive things to say about your surgery that it makes me feel so hopeful. I've read you had tos over 30 yrs and I have had it over 40. D has not promised me a whole lot, not because of my age because I did ask him if he was worried about that and he said, no, he is more worried about the length of time I've had the tos. The few things he has not wanted to confirm can be done are my, neck and shoulder. I am upset because of my neck not being able to be moved forward and back, side to side and tilted to R or L. My should is always burning (even tho I do take Tyl. 3). He said I will take dylaudid in the hosp. Did you have any neck or shoulder pain? Funny, I was hoping to try pilates and yoga after surgery, but I will have to wait and listen to everyone. Since I have been so limited for so long I am anxious to change that. Like holding a book to read it instead of having to put it down w/in 5 min. because of the neck and shoulder pain. Also, I would love to hold babies. I was so robbed of my grandchildren when they were small. I pushed and pushed to hold them anyway and eventually had to stop. I used to rock my grandson (who had reflux for a year) in a straight chair without arms because I couldn't sit on one (hence a rocking chair). So, I am again very happy to hear anything you have to say as well as others who have used D because it makes me feel so encouraged. Thanks Again Limoges

Irisheyesmilin

Jan 2012
I made an appt with Dr. Williams at kerlan Jobe. He took one look at my shoulders and my disc mri and said he was guessing I have TOS.He sent me to Pasadena to have a Brachial Plexus MRI. The MRI showed some neural Edema , a large suprclavicular vein and possible TOS. Dr. W prescribed physical therapy and a posture shirt. By the way Dr. W has a financial stake in Alignmed which make the postureshirts. I told him I wanted a scalene block thinking at that time it would be the cure I needed. He said okay and gave me info on their surgery center with no other info . He also has a financial stake in the surgery center at Kerlan Jobe. Even though they took my insurance I did not feel comfortable with the amount of info I was getting. He didnt like too many questions and I am miss question answer. When i found out I would have to be sedated I decided that wasnt my first choice of treatment and went on my quest for a good TOS doc.

Went to Dr. Filler based on their website. He spent alot of time with me and confirmed the TOS diagnosis. He said my middle scalene was the culprit and my long thoracic nerve was involved. Told me about his fancy MR Neurography machine and if that didnt work he does scalenectomy at Cedars. Cost -MR Neurography $15,000 out of network so I would have been lucky if my insurance would pay any of it. They have a sales pitch and showed me the machine downstairs in the basement. When I got home I went online and most of the reviews are bad. There is also a fight going on btween dr. F and a former patient that you can read. After a couple of people warned me about him I decided this wasnt the one.

Started seeing Joyce Wilkinsin PT. I like her alot seems to know what she is doing. I am still seeing her but my visist are almost running out.

Went to see Dr. Carden a pain doc at the D.I.S.C. center, He is a well renownd RSD doc and has worked with alot of athletic teams .This was the most Bizarre experience. He told me I was doing to much research, didnt know what I was talking about,disbelieved the TOS diagnosis, gave me a sympathetic nerve block right there in the office and said I should get a spinal epidural,went ahead and ordered it from my insurance without asking me,got hostile when I asked for my records. Very aggressive and Condescending.

Finally,got into see Dr. Jordan and knew he was the one,even though he is cash only. He spends an hour asnwering my questions. His scalene block that he does in the office was 3500 as compared with Dr. F's 15000. Plus Dr. J explained that MR neurogrphy is outdated and what he does with ultrasound is much better because it is live. I am still waiting to see how much my insurance will cover.

With Dr. Jordan since Feb- I did

Scalene Block Injection-
It came back Positive ,but i'm not convinced since I wasnt in alot of pain to begin with.
Botox injections-
Bad reaction for 2 weeks then about a month of some releif,now symptoms are returning
Trigger Pt. Injections_
heped in a few muscles not much releif

Now Dr. J is recommending Brachial Plexus Nerve Block Injections or Facet injections in case some of the pain is coming from the facet joints.
Am still trying to decide if I want to do either of these. Bringing back the disk problem I've been ignoring is making me question all my decisions so far. I wish someone could just tell me where the pain is coming from!!!I decided I need more info so I go back to see Dr. J on May 17 and will bring my Disc MRI since I dindt have it last time. Every visit is $200.

Also in Feb, found out that a dr at Orthohealing ,Dr. Aufiero is covered under my insurance. Orthohealing is the famous place in Santa Monica with Dr. Sampson .Dr. A is Sampsons associate Dr. I like her alot and she is easier to make appts with a little more alternative than Dr. J.

She also spent alot of time with me and she and dr. J know eachother and respect eachother.

Dr. A gave me:
Amino Acids and Anti-inflammatory diet for Inflammation
The Spinal Q Brace which I finally just got and is great.
Neuropathy Cream from a homeopathic pharmacy
Recommended Trying Neural Prolotherapy if the botox or TRPS dont work.

Jan-April 2012

Dr. Williams/Kerlan Jobe
Dr. Filler
Dr. Carden at D.I.S.C.-
Dr. Jordon-Jackpot!
Dr. Aufiero -Orthohealing Jackpot #2
Joyce Wilkinson P.T. Jackpot #3
Dr. Raj-Trigger pt Massage.-Tried twice jury is still out


Okay enough Typing. Next : Surgeons and second opinions on injections

Dr J has been my doc since 2008. 14 years of TOS and finally a savor offering me some type of life quality. Dr. Wlliam's was my diagnosing physician back in 2002. He fought like hell getting me the correct MRI/MRA to be properly diagnosed but he really didnt have any additional thoughts after surgery in 2003 when sx's all returned. Interesting to read how he has grown his practice and incorporated the BP MRI and surgery center for blocks. I know he refers patients to Dr J. Maybe he needs to read the new TOS text book