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.

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

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!)

Thanks,It just took me awhile to find the right dr's . Once I did I am stick with them. I am sure I will do the same with Surgeons and once my pt is done I will be looking for a chiro or osteopath to continue with the rehab. I'm sorry you werent able to return to your work, and I might not be able to either, I may have to adjust,but not gonna give up hope.


We decided not to go ahead with the NP Injections today because I was not in enough pain! I did everything I could to bring on the burning pain I had last night and yesterday but go figure. Even after all that typing. You have to have enough pain to see if you feel releif right away oterwise its a waste of time So Dr. A said to call on a day I'm in alot of pain and she will squeeze me in. She is the Greatest!

I do feel lucky that I have good insurance and have a few of dr's to choose from here in L.A. Unfortunately this year UCLA decided not to contract with Blue Shield so that eliminates the docs there.

I saw Dr. Gelabart at UCLA today and he is by far my favorite Surgeon out of the 3 that are in L.A. A really caring and nice man. Fairly thorough although did not look at my mri's,just saw reports.Asked alot of questions.Kept saying "Interesting" when he was examining me He said that Dr. Jordan usually only refers patients to him that have failed his injections .etc, He saw no arterial and venous symptoms. Suggested I try Facet Block injections or Cervical Epidural just to rule out the disc bulge and stenosis being the cause of my pain before doing Surgery. He does Trasaxilary Rib Resection and partial scalenctomy.He thinks this is the superior way to go. says he has a 90% success rate. Once in a while a patient comes back to get a full scalenectomy. He says the scalpular pain only has about a 50% chance of getting resolved but arm pain is usually better. he didnt know statistics on the shoulder pain (Traps,pec minor) etc because not everyone has that pain so they dont keep track of that. He relys mostly on the scalene block test( They all do) so I would want to repeat that if I decide to proceed with surgery since I think it was questionable weather it worked or not. He didnt think Ahn's Angiogram or angioplasty test was a good idea,or that the MRA was necessary. he was so-so on a Mac or SSEP test.(Has anyone had either of these? Were they helpful in the Diagnosis? Where did you have them done?I'm particulary interested in the Mac,because my pec Minor is really tight.)
He gave me a 3 page doc on TOS which describes all the tests etc. I decided to pay cash because he is out of network on my insurance and he only charged $200 for the visit. it would have been $700 if they billed insurance. If I decided to do surgery, I would have to wait until August anyway when my insurance changes to Blue Cross(keeping fingers crossed this happens)

Dr. Ahn said I had Arterial and Venous symptoms because my veins stuck out of my neck and my pulse on right side was lower. No else has said this,so dont really beleive him. He wants everyone to do an Angiogram/Angioplasty so he can see where the impingement is and decide then which operation to do.He will either do Rib-Resection/Scalenectomy or Pec Minor Tenotomy, so he is the most versatile.I just didnt get a great feeling about him. in a way his approach makes sense,but just seems very invasive especially because I dont have any arterial symptoms. I beleive he is writing a paper on this and like nospam,I dont want to be a guniea pig.

I also saw Dr. Mckenna at Cedars Sinai. He hardly examined me at all. thought my left side pulse was worse than right,but said that test is unreliable.He was the most conservative,said to try more injections,pt etc He takes the whole rib out,no scalenectomy.Didnt feel particularly confident with him. He has some kind of tic that makes him look like he is going to sleep when he is talking to you. also I heard a horror story about a botched surgery from another Dr. Probabl would not go with him.. He is not on my insurance yet either. His visit was $600 through insurance. I will probably end up paying 400 of it.



If I had to choose today I would go with Dr. Gellabart,but luckily I dont. i have been doing PT with Dr Ando(No-spams PT) and I am feeling better overall but have had a couple of flare-ups lately. i am going to give it a few more months and if I still cant go back to work by August or September I will
consider it again. Of course I go back and forth depending on how bad the pain gets.This summer i may check into the Denver Dr's or at least call Dr. Sanders on the phone.

I see Dr. Jordan next week and will discuss the surgeons with him and injections again and see who he recommends for the facet block or epidural. and also make him take a look at my cervical MRI as I didnt have it last time and we want to revisit that.

i still will probably try the neural prolotherapy at Orthohealing if I continue to have flare-ups,before I go with the facet block or epidural. I hate how I have to do these invasive injections just to rule something out. I was also told they could make things worse for the nerves and muscles by Dr. Gart(Pain Dr. at Cedars)