Hello to all !!!

My name is Carrie. I was recently diagnosed with Thoracic Outlet Syndrome on the left side. My angiogram showed complete arterial and venous occlusion with arm abduction - and also nerve impingement, all caused by the clavicle and first rib butting up against each other.

My follow-up appointment with the vascular surgeon is not for two more days, but he did say after the procedure that the only way to fix it was to remove the first rib. This is very concerning as I am a wife and mother of five. I run too small businesses, one of which is a transcription service (typing, typing, typing!). From what I've read so far, this surgery is debilitating with an extensive recovery period - also, I may not ever be able to type again. IS THAT TRUE?

I realize that everyone's experience is different, but I'm trying to come to a general consensus in deciding whether or not to proceed with such a drastic measure. Dr. says the alternative is blood clot(s) and possibility of stroke and/or other life-threatening conditions.

Right now, my symptoms include moderate to severe shoulder pain, complete arm aching and heaviness, numbness and tingling in my hand (especially 3rd thru 5th digits), and weakness in that arm (also, pain when I life anything with it, or "tweak" it in the wrong direction).

Does anyone have a similar situation? I'd love to hear from you. Don't know who to talk to as my Dr. says the condition is relatively rare and, in fact, he refuses to perform the surgery because he doesn't have enough experience with it. He is referring me to another surgeon in Orange County (California). Does anyone have ideas for GREAT surgeons for TOS in that area (or L.A., Riverside, San Bernardino, or San Diego Counties)? I've heard there are good docs at UCLA for this, but don't know any names.

Looking forward to any and all responses,

Carrie

Hi Carrie,

I too keyboard for a living (stenographer/court reporter). I love my job. You're going to have problems. TOS and keyboarding is not good. I can't think of a job that would be easy with TOS, though. Most TOSer can't work because of their symptoms and the condition TOS can put you in. Self employed TOSer may have a better shot at keeping their job. Before TOS I used to drive anywhere in Kentucky my clients would request. Well, after TOS I had to give up driving long distances pretty quick. I don't report for federal court anymore. I don't take jobs that are over an hour and a half travel time, one way. I didn't take all day jobs for many years. I can do that now. I did make changes in the way I do things. I closed my office down and moved my office into my home. definitely something I didn't want to do. But you know, God has taken care of me in spite of my fool self. I started getting calls for more local work. Income has changed but not drastically. you're probably thinking more about you not being able to provide service to your clients right now than the actual potential loss of income, but sorry to say things will likely change with both for a while.

During this period of trying to figure out what to do, explore all options, even being off keyboards for recovery, either with surgery or no surgery. I wasn't in as much pain when I tried to not work for a short while. I've struggled and suffered and stressed my profession to the end of its rope and fell flat on my face many times, but I'm still working. Definitely challenging. After 8 years I'm still working. I thank God for that. I have improved and it has gotten a lot easier, but never a day without the reality of TOS surfacing. I would work one problem out only to be faced with a couple more problems.

Your condition may require surgery. I don't know. Some surgeries are successful. Some are not. Serious things to think about. You're family and children will have to help you though this. I've found writing a list of "Things to Do" gets things done around here better than me waiting for everyone to do what I want them to do, or do what they're supposed to do. They can't read your mind nor will they know how to do things if you don't tell them.

There are some good tips on this forum. I'm being very open and honest with this forum. Hopefully we can all benefit and find comfort in support from others who suffer so much with TOS. I know I have.

I look forward to hearing from you.

Welcome Carrie,

I would advise you to get a couple more opinions from experienced doctors in your area. I believe some of the people around here have seen (and had surgery) with a few of the doctors in southern California. A good doctor is essential to getting you better - whether it be surgery or other alternatives. While you dont want to mess around with the chance of a blood clot, it sounds as though you may have some time to weigh your options? TOS is a complicated condition, and everyones situation is unique and deciding whether to have surgery is a big decision...

Keep us posted as to what the doctors say and who you see. I will be interested to see what the doctors say!

Hi
I'm glad you've found this forum to help you get more information about surgery. I've been visiting it for a while post-op and there is so much support - and more information here, especially if you search the forum. Only wish I'd found it earlier.
I was in your situation just over three months ago - and had my first rib resection. Everyone's experience is different but for me I feel like I'm getting my life back again. Post-op is tough and you will need support, especially for the first month, and really good physiotherapy - but I'm already leading a more normal life, able to swim, type and even back at work. I still have pain and get tired but I'm improving all the time.
Thoracic outlet syndrome is such a mix of symptoms and signs, but if you're compressing the artery like I was, then I suspect most doctors will recommend surgery because of potential complications. It's really important you trust whoever you see and that they know what they're doing - I'm based in the UK but I know there are links to good drs in the US from this forum.
Take care - and if you've got any other questions, I'd be happy to share my experiences
Jenny

Get well wishes for you. You're a trooper.

Hi and welcome to our little sanctuary!

I had vascular...and neurogenic tos. I had to have surgery due to the compression of the subclavian blood vessels. You are at large risk of stroke if you are using the arm and you kinda have to I'm assuming!! Vascular tos is not something to wait on and I would certainly agree to a second opinion. However in saying that if your vascular surgeon won't do it he is a good doc. He knows his limits and won't do what he isn't comfortable doing. That is a really good thing.

Hopefully some of the other tosers will let you know who to see for surgeon's names and where to go to for help.

Have you had an ultrasound of your brachial plexus? This would be your first indication of a vascular problem. If you have vascular involvement it willl most certainly show up on the ultrasound.

i hope you hear from some of the Cali gals soon!! They will definatly guide you in the right direction doctor wise!!

take care and again welcome,
hugs,
Victoria

Jenny -

While I'm hopeful there are more to be found, your post is the first relatively optimistic one I've read. Thank you so much!

I'm really glad that you are improving and hope my outcome will be just as encouraging.

If all goes well with my surgery (or alternative), I'll be visiting London for 8 days in April for a family retreat. Also, in January, my mother-in-law will be going to Leeds for about a year and a half. Do you live anywhere near either?

Hoping to find some type of support group here close to home. Of course, I don't know anybody in my circle of family or friends who has ever heard of TOS - and most doctors haven't either!

My angiogram procedure was actually a little unique, they say, because all of the nurses and techs had to have the vascular surgeon explain my condition before starting the test because none of them knew what it was or what they were looking for. When they put my arm over my head and re-injected the dye, I could hear a sleuth of "Oh, my gosh," "Look at that," "I've never seen anything like that," remarks. Because I was "twilight" sedated, nobody really talked to me about it after that.

My angio was on Nov. 19th and I've had to wait thru the holiday for my follow-up, so naturally I've been a little anxious. Hoping to get some answers tomorrow, although Dr. already told me he will refer me out to another surgeon - so I'm not expecting much.

We shall see!

I hope you continue to improve and feel better every day. Thanks again!

Carrie

Hi There,

I am in the San Diego area and am struggling to locate any physician who can even just diagnosis me. Please, please, who was the physician who referred you? That is at least a start for me. I appreciate that your physician knew his limitations and referred you to a specialist. But have all the symptoms after an injury and no San Diego area doctor seems to be able to know what's wrong. Pretty please, what was his name?

Hello Mags,

this list is from our Drs & PT sticky thread.
Hopefully it will be of help until you get a specific reply.

California

Sheldon Jordan
Neurological associates of West LA
2811 Wilshire Blvd #790
Santa Monica, CA 90403
310-829-5968

Also PT's, don't' know if they are there:

Westside Spine and Joint Rehabilitation
1082 Glendon Ave.
Los Angeles, CA 90024
(310) 209-2011

Joyce Wilkinson
2664 29th street
Santa Monica 90405
310-392-8259

SALINAS PHYSICAL THERAPY/Sports Medicine
21540 E Yorba Linda Blvd Suite A,
Yorba Linda, CA
714.695.1566 fax 714.695.1533
www.salinaspt.com *Docotrate in PT
He has been helping me so much
since my 911 call
Joyce in Santa Monica that Johanna, Shelly, Ali and everyone uses was booked for 2 weeks

Dr. Wladislaw Ellis
2445 Carleton
Berkeley, CA 94704
(510) 849-4703
(510) 849-4995 (FAX)

David Agnew MD
Neurology/Pain Medicine
533 E. Micheltorena St
Suite 202
Santa Barbara, CA 93103
805) 962-1116

Samuel S. Ahn, MD, FACS
Vascular Surgeon
University Vascular Associates
1082 Glendon Avenue
Los Angeles, CA 90024
(310)209-2011x3 (o); (310)209-2113 (fax)
email address: sahn@universityvascular.com


Dr. Hugh Gelabert
UCLA Gonda Vascular Center
200 UCLA Medical Plaza Suite 510-6
Los Angeles, CA 90095-6908
310-206-6294
FAX: 310-206-3885
Website: www.surgery.medsch.ucla.edu/asp/doctors.asp

Dr. Ernestina Saxton / Neurologist
2070 Century Park East suite 401
Los Angeles,California ,90067
phone is 310- 556- 0765


Dr. Aaron G. Filler / Neurosurgeon
Institute for Nerve Medicine
2716 Ocean Park Blvd., Suite 3082
Santa Monica, Ca 90405
(310)314-6410
http://www.nervemed.com


Dr. Richard M. Braun
770 Washington Street, Suite 301
San Diego CA 92103
619 - 297-9200
-works closely with physical therapists in the same building:

The Hand Center
770 Washington Street, Suite 207
San Diego CA 92103
619-299-5000
Dr. Linda M. Reilly, MD
Associate Professor of Surgery in Residence
Assistant Chief of Vascular Surgery
University Of California
San Francisco, CA 94143-0222
(415) 476-1357

Hugh A. Gelabert, MD., F.A.C.S.
Associate Professor Division of Vascular Surgery
UCLA GONDA Vascular Center

Newkirk Neurology
METS Clinic
1099 D Street
San Rafael, CA 94901
Phone: (415)258-1838
Fax: (415)457-2850
Website: www.drnewkirk.com

James Avery, II, Thoracic Surgeon
CAL Pacific Medical Center
2100 Webster Street #320
San Francisco, CA 94115
Phone: (415)923-3150
Fax: (415)563-2527

Dr. Darren B. Schneider
Clinic: Vascular Center at UCSF
400 Parnassus Ave. Room A-6110, Box 0957
San Francisco, CA 94143
Phone: (415)353-2357

Thomas McClure MD
CPMC Davies
Castro & Duboce
San Francisco, CA
Phone: (415)565-6616

Jon C. Bowersox, M.D.,Ph.D.
Associate Professor of Surgery
Chief, Vascular Surgery
Mount Zion Surgery Faculty Practice
2330 Post St., #420
San Francisco, CA 94115
Tel: (415) 476-1070
Fax: (415) 353-9526

Dr. Pang / Neurosurgeon
Sacramento, California
UCD (University California Davis) Medical Center

Peter Edgelow, PT
Northern California
(510) 732.7881

Todd Soares, P.T.
North Santa Rosa Physical Therapy
2305 Mendocino Ave., Suite B
Santa Rosa, CA 95403
Tel: (707) 579-4217
Fax: (707) 579-3271

Dr. Scott Peterson
Santa Rosa, CA.

Dr. Daniel Cross DC
Fair Oaks, CA

Dr. Matan / Orthopedic surgeon
Pinole, CA.

Dr. Stallone & John Pletz, M.D.
Oakland Ca.
Spine Clinic
1-650-994-0459
In Daly City (just south of SF) on Mon & Wed
In Fairfield (near Sacramento) on Tuesday
In Santa Rosa on Thursdays
www.spine-clinics.com/

Dr. Michel Gagnon, DC, ART,
& Dr. Tina Roach, DC, ART
Active Release Therapy
6105 Snell Ave., Ste. 101
San Jose, CA 95123
(408) 972-5686
Fax (408) 578-1804

Murray Tanner/Physical Therapy
3640 W. Lomita Blvd. Suite 203
Torrance California 90505
Ph (310) 378-1212
Fax (310) 378-0124

Linda Johnson & Bob McGrath: PT & Feldenkrais Practitioner
Clinic: Movement Matters
PO Box 492722
Redding, CA 96049
Phone: (530)222-3622
Fax: (530)222-3657

Dr. Louis Messina
Clinic: Vasular Surgery-Chief Surgeon
400 Parnassus Ave Room A-6110, Box 0957
San Francisco CA, 94143
Phone: (415)353-2357

Dr. Terri Turner DO
Osteopathic Doctor
698 Peteluma Ave.
Sebastopol, CA 95472
Phone: (707)824-9742

Dr. Richard Fischel
Chapman Medical Center
2601 East Chapman Avenue
Orange, CA 92869
Phone: (714)633-0011 ext. 1423
Website: www.chapmanmedicalcenter.com