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New Member with TOS
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. :hug: |
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.:D
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Thanks for your encouraging report!
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 Quote:
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re vascular aspect
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:hug: |
re: Vascular Aspect
I haven't had an ultrasound, but an angiogram is supposedly one step up as it uses special xray technology and contrast dye to watch the flow of blood in real time. You could actually see the dye flowing through the blood vessels (well to a certain point, of course, where it just STOPPED - where it shouldn't). Doc said that usually at least some blood gets through, but, in my case, none could - at least on the left. Right side was better, but I'm not sure how much better. Will hopefully find out today.
Already got a few names of good doctors near me. Will see who my doc refers me to today and go from there. Everyone here has been awesome. HERE's TO A SPEEDY RECOVERY FOR ALL OF US !!! Carrie Quote:
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Do you have a lot of arm or hand swelling?
That usually indicates more of a vein related compression. My arterial pulse stops when my arms are elevated or pulled back to certain ROMs, but I don't seem to have any vein involvement. A percentage of the general population will have the blood flow stopped also at certain extreme range of motion {ROM} - but they would be non symptomatic of TOS. I only had minor swelling during my worst time. I managed to get beyond the worst of my symptoms without finding a "TOS" doc, my chiro & a couple of very good PT people worked out great for me. -one thing my chiropractor told me was that clots are more likely to happen if the vein is involved and it's less of an issue for artery blood flow. I don't know if that is true or not though. You may want to talk with a Vascular doc and get some more in depth knowledge about the vein/artery connection. I thinks some had venous compressions most of the time at all arm positions - they were the very serious cases and some had clots and that was how they were dx's at the time. Did you find our useful sticky threads {TOS drs & PT, & useful info} above our main TOS page thread list? TOS main page - http://neurotalk.psychcentral.com/forum24.html tons of saved links, polls, important threads, videos, collected in those stickys - browse thru them as you have time. PS posture is a main issue to start working on - you are hurting and the next thing you know you are slouching or hunching to relieve the pain and it become s a bad cycle of worsening posture = more pain & problems. Sharon Butler {book or website} has some great at home things that are very helpful. we have posts & threads if you do a forum search on her name they will come up for you. |
big gun tests before easy less invasive ones!!!!
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Well an angio is proof positive of vascular tos. Be careful please with this and don't wait around for docs. Make sure you can be seen asap. I just don't understand why they do the angio before an ultrasound. It seems to me that doing an angio which costs so much money is the second test to do AFTER doing an ultrasound which is lower in cost. does not compute!! just me commenting on your medical system.....but then what do I know it takes me sometimes years to see doctors here in Canada so perhaps I should keep my nose out!!!:eek: take care love and hugs, Victoria:hug: |
gibbrn,
I can see why you are confused. When I went to the hospital with massive arm swelling (double its normal size) they first did an ultra sound which pretty much showed a clot. Then to be sure, they did an MRI (both non invasive), which indeed confimed I did have a blood clot in my subclavian vein. At which point I was sent to the hospital in Denver which was better equipped to deal with my issue. Early the next morning I had an angiogram, which showed without question that the subclavian vein was being pinched shut between my collar bone and 1st rib bone and muscles and was not allowing blood flow and therefor casued the clot. Then while they were in there with catheters and wires they did a thrombolysis (to desolve the clot). I had numberous angioplastys (a painful invasive process in which they again go in through the arm and try to blow the vein up with balloons) before having to have rib resection surgery a week and a half later. The thrombolysis procedure was mentally the worst. First they ask you if you have a living will and then let you know that the procedure may not work or it may kill you - not somthing anyone ever wants to hear. They drug you up so you cant feel anything but they did not warn me what I would see on the big tv screens that are using. When I saw the clot break into a million pieces and shoot a million miles per hour in the direction of my heart and lungs - I thought it was all over! Ugh... One of the worst experiances of my life! I guess since I have decent insurance, and they knew they would get paid, they put me through every test imaginable. |
Medicine is a science and sometimes seems like, for the patient at least, still Mad Science for humans :D
Hope you're doing better now. For all you've been put through, you should get a medal. :hug: Quote:
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San Diego Physician Who Diagnosed You
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 |
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I would love to get a second opinion but will try with my hematologist and if he won't I will ask my GP to refer me to another vascular surgeon who is a little more pro active :eek: |
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