Hi everyone. I'm a new member and I'm very happy to have found this forum, because I have a lot of questions. Also, hopefully I can share my experiences with others to help them!

I've been suffering on and off with right-sided back, neck, chest and rib pain since a pair of car accidents in 1999 and 2000. In the past five months that pain has become so excruciating that I've had to stop working and am almost completely bedridden. I've been recently diagnosed with right-sided TOS and a doctor has recommended a scalenectomy although my scalene block results were inconclusive. I do have abnormal EMG results and extensive nerve compression showing up on an MRN.

I am looking for a Los Angeles recommendations for the following: a doctor to spearhead my care, a doctor to give me a second opinion of the diagnosis and surgery recommendation, physical therapists who specifically deal with TOS and any other healthcare providers that may have helped you. Have there been any great Los Angeles healthcare providers that you could recommend? I am in dire need.

Also, does anyone know if there is a problem with a vascular surgeon performing TOS surgery on a patient with wholly neurological symptoms? In addition, does anyone know how I can find out what the rate is of success for a scalenectomy? And, are there any other shots that I can get such as epidurals, with which other members have had good experiences? Does anyone know if there are doctors at the Mayo Clinic in Rochester that deal with this problem and if it is a good place to go for TOS if you have become frustrated with your local medical system?

Thanks so much for any and all thoughts.

Hello! I'm not from the LA area, so I can't help you there, although several here are and I'm sure you'll get some good answers. I thought that I might be able to address a couple of your other questions, though.

I noticed on another thread you asked about Dr. Sanders. I live in the Denver area and have seen Dr. Sanders. My doctor here sent me to him because all he does are TOS surgeries, and therefore my doctor felt that made him the most knowledgeable in the field. He performed a lengthy exam, during which my scalene block was also inconclusive. He did recommend surgery for me (my TOS is also from an accident), giving me a 60/40 chance of improvement. However my PM Dr. feels that may include about a 20% chance of worsening symptoms, so at this time I've chosen against the surgery...I've also had some possible early RSD symptoms, which also makes me decide against surgery right now. I have some contributing factors with the TOS, with some instability in my clavicle at the SC joint, which cannot be repaired surgically and would still be an issue even if I had a scalenectomy done. Dr. Sanders says he doesn't touch the clavicle.

I am, however, considering having myobloc injections done in the scalenes by my PM Dr. I discussed this was Dr. Sanders on the phone and he felt it would be a good option for me at this time. I mentioned to my PM Dr. that the scalene block and Dr. Sanders office was inconclusive; however, he said he would do the blocks under fluoroscopy in order to assure proper placement of the needles, as he said that placement can affect the result of the block.

I also questioned whether or not a vascular surgeon would treat a neurogenic TOS, as mine also appears to be almost completely if not completely neurogenic; however, with Dr. Sanders experience in dealing with all types of TOS, I would feel comfortable with him during the surgery if I choose to do that in the future. I did go to see a neurosurgeon for a second opinion, who also felt that this surgery at this time might not be the best option. He did recommend the myobloc procedure, though. With this surgeon I did go ahead and have a cervical fusion done last summer, in hopes that fixing the disk problems in my neck may help with the numbness and pain in my arm. I also discussed that surgery with Dr. Sanders, who felt it would be a reasonable attempt at solving some of my problems; however, it did nothing for my TOS symptoms.

Well that's a lot about me and I'm not sure if any of it will be a help to you, but I wanted to give you my two cents worth. I do know that Dr. Sanders seems to be a very nice and knowledgeable doctor, and I have spoken with him on the phone for follow-ups a couple of times. I would also be interested to find out the success rate of scalenectomies... I discussed that with Dr. Sanders, who is beginning to compile some information regarding his own patients. I don't know if he's published that or not yet; at the time I saw him it was still just an informal research project going on.

Take care, and I hope you find some relief!

Donna

[extensive nerve compression showing up on an MRN]

on the MRN - was the compression shown to be caused by the scalenes?

I would want to be very sure that any surgery was going to be done on the correct area of compression and by a expert doc with plenty of these surgical procedures under his belt.

You have no possible sx of RSD correct?

That is another thing to be sure about before any surgery.

If you list list your sx maybe we can give some tips or home ideas for a bit of relief.

we do have a doc list in our useful sticky thread - near the top of our main threads page.
If you have doctors names in mind you can use the search this forum tool in the blue bar at the top of our forum list too.

This is an OC TOSer
I too am having problems finding a consult with "right" surgeon
After 7 years of this mess
I did find Mr. Wizard himself.
Dr. Agnew (Neurologist/Pain Management) in Santa Barbara
He doesn't beat around the bush
And reads films better than a radiologist
Tells you what tests you need and which direction to go next.
He speaks highly of Dr. Sanders and Dr. Avery
There are TOSers here that have had good results with Dr. Filler and Dr. Jordan in LA area.
Does this help?
PM me anytime and I'll help you anyway I can and so can alot of CALI painful peeps.

Thanks very much for your replies.

My symptoms are right-sided pain in my ribs shoulder right side of the neck and shoulder blade. Some tingling and numbness in my arm and hand all of which is aggravated by the use of my right hand. I may have a second injury called a neuroma in my ribs. My MRN shows compression from the scalene muscles and first rib. My EMG shows nerve abnormality in the muscle supplied by my C7 nerve root.

Dr. Filler is the surgeon that has recommended a scalenectomy. Have you done any good or bad things about him?

What is Dr. Agnew doing for you? In other words, how did you know that he was the right doctor? I'm trying to figure out if he would be worth the trip to Santa Barbara based and your recommendation.

Meanwhile, I have appointments coming up with Dr. Edelman and Dr. Gelebart at UCLA. Have you heard anything about those doctors?

Have you found any physical therapy that helps? If so what kind and you have any one practitioner to recommend? Also, I never heard of Dr. Jordan before. Do you know how I could find out more about him?

I would be most appreciative if anyone else can weigh in on any of the above. Thanks again so very very much. And, of course, please feel free to PM me.

http://www.google.com/search?q=Dr.+S...ient=firefox-a
dr s jordan googled list

One of these days, (maybe today) I'll get him added to the docs list:
Sheldon Jordan
Neurological associates of West LA
21811 wilshire Blvd #790
Santa Monica, CA 90403
He is out of network for most, but I really like him. He is my main TOS/pain doc.


Ernestina saxton- on the docs list, is generally in-network, and also good at TOS.

for PT two recs:
Westside Spine and Joint
1082 Glendon Ave
310-209-2011
(this is also the number for Drs. Ahn and Reil, they practice in the same office space)

2. My PT who is
Joyce Wilkinson
2664 29th street
Santa Monica 90405
310-392-8259


I actually had a very nice surgical consult with Dr Reil, who is Ahn's junior associate, yesterday. I am very close to having surgery, and plan to either go with Filler or Ahn, going to meet with Gelabert, too, but not sure if it is worth it since Ahn has a great rep for the rib removal surgery unless gelabert entertains not taking the rib. If you want the Filler procedure with neuroplasty, there is a reason to go out of network and do that. I get MRN results from him next week, and an SSEP for Reil/Ahn next week, then plan to make an informed decision and proceed.

My injury is not from car accident, but was yoga and repetative strain..i think i also had compounding factors of wrist sprain and some other bad postural habits.

feel free to pm or ask me any other questions.

Johanna

Ya-know
You know, after you have seen 30 docs
And the 3 you have paid for personally casue Workers Comp denies you treatment, after all the research and recommendations by TOSers here have been the bestest in the Westest.
Dr. Agnew was recommended by a patient with TOS and nine, yes 9 surgeries.

There are good docs out there
Dr. Jordan is like by many here.
Dr. Fuiiller is another one.
I never had the chance to have anyone recommend them to me prior to me seeing Dr. Agnew.
I needed pain management and medical trreatment.
I didn't want to rush into another surgery without ALL the facts.

But, hey
You gotta remember
We are all here because whatever we have done to get this death defying condition we are still in pain pre and post surgery.
We all live in different skins, structures and not one surgery is THE surgery.

I think the surgeon are trying to get it right but not there yet.
Still reprocussuions after surgery as if surgery isn't dangerous enough.
We may get some relief but realistically we will never be the same and our lives are changed forever with pain and disadvantages.

Yikes,
I timer just went off...



The issue is

You asked about therapies too - i did some searches and here's some of our threads on PT and other therapies-

http://neurotalk.psychcentral.com/sh...=Sharon+butler
http://neurotalk.psychcentral.com/sh...=Sharon+butler
http://neurotalk.psychcentral.com/sh...=Sharon+butler

botox & injection thread-
http://neurotalk.psychcentral.com/sh...hlight=therapy

muscle spasms thread-
http://neurotalk.psychcentral.com/sh...hlight=therapy

A note about success rates for scalenectomy:

My doctor told me that the success rates on patients followed by ucla over a 15 year time frame was 70%(90% for first year) on rib resection and 50% on scalenectomy. Not to say that you couldn't go back for the rib resection after the scalenectomy... and of the 10% that don't get better with the rib resection, a portion of them get worse (is ther really worse than this? I guess so)

in summary:

more serious surgery, somewhat better success rate= first rib resection

easier surgery, lower success rate= scalenectomy


If Dr Filler's MRN is worth anything (and many will tell you it isn't) than you (well, he) ought to be able to increase the odds of success with scalenectomy seeing some that will clearly need rib resection before opening you up.