Hello, I am new to this forum, I saw that their is a list of doctors on one of the threads, but I wanted to see if anyone had advice for PT or chiros in my area that they think are truly amazing at helping people with TOS. I live in the West Los Angeles area and my current vascular doctor is Dr. Ahn, (if anyone would like to comment about him, I'd love to hear it) he is suggesting that I have surgery to correct the problem, but I am afraid of what my life might be like afterwards if it doesn't go well. Thank you so much for any advice you give. -Joshua

You could see Kevin at westside spine and Joint. That's at 1082 Glendon right by Dr Ahn-

there is also Joyce Wilkinson on Ocean Park in Santa Monica 310-392-8259

joyce wilkinson is an excellent PT on your side of town. she is in ocean park. board certified orthopaedic clinical specialist, superjoyce (as she's known around these parts, joshua--) does manual physical therapy, orthopaedics and sports physical therapy in her busy practice.

dr. samuel ahn is an excellent surgeon. you don't say whether your TOS is primarily vascular (i.e., veinous and/or arterial) or neurogenic in nature, or a combination of both. many of us are neurovascular. the fact that you do not have much pain tells me that you may not have many neurogenic aspects at this time, however. at the same time, loss of hand function almost always involves nerve damage or at the very least, compromise... so i really couldn't say.

vascular TOS'ers tend to have better outcomes from TOS surgery, as you may be aware. you are absolutely right to be cautious, but with all due respect i don't think dr. ahn would be recommending surgery if he thought PT would address your issues. (i know that is not what you want to hear, and i'm sorry but it is the truth.) if you would like to obtain a second opinion from another top TOS surgeon who thinks quite differently from dr. ahn, then you might consider an evaluation with dr. fred weaver, who heads up the vascular surgery division over at the keck school of medicine at usc.

and it goes without saying, joshua, that as we are not MD's we cannot give you medical advice here. support and information, yes. benefit of experience, you bet! and you'll find that we have LOTZ of opinions, oh boy howdy do we ever! and each of us has his or her favorites when it comes to docs and PT's.

the fact that dr. ahn has a concern about a clot forming is nothing to be taken lightly. at the same time, many are leaning more these days towards a good long course of the RIGHT type of PT and bodywork (e.g., hellerwork, feldenkrais, etc.) prior to any thought of TOS surgery as an intervention against the TOS beast. it is a very personal decision, however, and there are always exceptions.

one of those exceptions, actually two, you touched upon in in your posts today. loss of hand function and risk of blood clot formation. dr. weaver is a rather conservative surgeon, so know that going in. i would also highly recommend that you see dr. sheldon jordan, a pain managment specialist on the westside with a background in neurology. let him drive the show and he won't steer you wrong, joshua. but you must be an active participant in your own care and start learning all that you can about just what you are up against.

joshua, the fact that you have, in all likelihood, received a relatively timely dx, are young, in otherwise good health and in excellent physical condition are all very much in your favor, as is your being of the male persuasion (smile). if i were you, i would take a careful readthrough of johannakat's fairly recent thread in the 'DR'S & PT' sticky called "how i chose my surgeon." i think you will find it most interesting. also, start fooling around with the 'search' and 'advanced search' bars in the upper righthand portion of your screen; you can call up almost any topic you can think of that way, by key word or by poster. and obviously use the links posted in the stickys to get to the medical literature and so forth, as you are able.

PM me and i will be happy to give you my phone numbers. i live in LA, too. there are a few of us here. not exactly joyful about it, but we are here. and here for you.

happy you've found us, man. sorry for the reasons why, though.

but it's gonna get better now... i promise you that!

alison

1. Each person's TOS is different. Thus for any ONE of us to comment on what works for us, may NOT work for you. Understand this before endeavoring to apply any modality of help.
2. My personal recommendation is to get to know your anatomy and what is being compressed and how as reported to you by your doctor. If he/she can explain in simplistic terms so that you understand, great. Get a book on anatomy that might show the structures so that you can see how they are interconnected/related.
3. If you know the anatomy and the relationship of each muscle, vein, artery in your particular unique situation you may help yourself remedy the situation without surgery. I say "MAY" no guarantees. And of course seek professional advise.
4. I found value in the Anatomy coloring book AND Wolf-Heiddeger "The Color Atlast of Human Anatomy" The latter has excellant photos/drawings of the Brachial Plexus and nearby arteries/veins as well as different angles all up and down the arm, shoulder, neck and head. Should give you some excellant perspective.
5. Once you think you understand the anatomy, go back and make sure. Know that sometimes, not all, pain in one spot may not be created in that spot...it may not be the spot where the damage/injury is. This is called "referred pain." For example, pain in the wrist MAY be caused by compression on the Brachial Plexus in the neck. Hence one possibility that people with CTS do not get relief from surgery in the forearm. (some do if the compression is there).
6. Talk with a good PT about your particular situation/anatomy. Pick their brain and expertise on how best to help YOU. With me, I have two things. Pec Minor syndrome and Costoclavicular syndrome. Both sides (right and left) with the left being the painful side and the side where there is more compression. Mine is both vascular and neurologic in that both the nerves and the arterteries and veins are compressed. I was referred to an excellant PT here and between her expertise and my getting familiar with my body, I believe we BOTH have come up with MY unique treatment. Basically, MINE involves opening up my chest, stretches for the pec minor, strengthening upper back (mid traps and rhomboids) to HOLD my shoulders back so that the chest remains as open as possible. That is the basic theory behind all that I do. It has helped ME. Not saying it would help you, but many TOS have been helped by similar or related therapies since many are POSTURE related. i.e. weak rhomboids/upper back and tight chest, rounded shoulders, kyphotic upper back etc., etc. If this applies to you, ask the doctor/PT if these same types of exercises could IMPROVE YOUR condition.
7. YOU are your best professional help. YOU live in your body. The doctor/PT/Chiro etc., can only base their suggestions on what they see and what you tell them. They have experience and knowledge but they do not know everything. They may miss something because there is a limit to all that they can retain...sometimes you mentioning a particular thing may trigger their memory/knowledge of "oh, okay then you need to do X" You can help them to help you.

Good luck

Thank you both so much for your advice and kind words, I am in need of that type of support right now. I will post again soon once I have more information. Take care, Joshua

Hi I have a great book called the trigger point workbook. It outlines anatomy which is a great suggestion to learn as then you can pinpoint where your issue is and clearly explain it to all who are treating you.

The book I got at Costco for $15.00 CDN.....so hopefully you can find it...great book....tells you how to pressure the points to help ease the pain and how to see where the pain is referring to and from.

Hope you find the help you need....always remember if it is a true TOS blockage of vessels or nerves.....more pain is not gain if it hurts like hell and your symptoms flare up too much then you are doing to much. A little bit of muscle pain like when working out is ok, but a blue hand or increased numbness and tingling could mean more compression of nerves and vessels perhaps causing more damage to the area and nerve damage is BAD!!!!!

best of luck,
hugs,
Victoria

You might also want to consider working with a Feldenkrais practitioner to begin with. They help you learn to listen to your body and move naturally in ways that do not hurt you, such as when you were a kid. Very gentle and hands on, and should not flare you up but may help. If you have been dx'd with vascular TOS and are at possible risk of throwing a blood clot, I would be wary of any strengthening exercises at present, but maybe stick to stretching, nerve glides, ultra sound, massage (NOT deep tissue).

TOS-savvy PT's will start here, gradually build in some of the Edgelow exercises to open the chest, etc, based on your sx and tolerance. Beware PTs who advocate stretchy bands, hand bikes and weights - they usually make things much worse when sx are bad. Light hand weights do have a place, but much later in recovery once nerve sx have calmed down.

You can google Feldenkrais if it is not under our useful websites - it needs to be if it isn't! There are several in the Greater LA area if I remember correctly.
Alexander Technique classes and Tai Chi are also said to be very helpful, I haven't tried the first but just picked up a book of the method, and the beginning Tai Chi class I took still had way too many arm movements for me.
I probably would have continued anyway for the benefit I DID get, but the basket ball games on the other side of the thin wall kind of messed with the relaxation and "Zen" state of mind I hoped to attain.

Warm, not hot, baths with epsom salts to start and end the day are also said to be beneficial.

There are lots of good suggestions under the Useful websites link at the top of the main page. And keep asking questions, there's usually someone by to answer it before too long.

Best wishes,

beth

1. The Trigger Point Therapy book is good. But I think it is only helpful in providing SOME relief (temporary) to muscles irritated by an injured nerve or vascular struture in TOS.
2. I want relief but I also want to PREVENT a flare up and further damage. Hence to know the anatomy and its interrelations to PREVENT a flare up, if possible. Since most, not all, TOS is related to posture and alignment, a lot can be improved to help relieve and prevent flare ups. Not saying always. That is why I want people to get a good anatomy book to see. Work with a good PT so he/she can help you understand the body mechanisms and interrelations as they apply to YOUR condition and you have a great modality for recovery. There are many things out there that will help improve the situation, provide relief, help to prevent. Yoga, Feldenkrais, Chiropractor, Massage, Exercise, Stretching, etc....I incorporate many in my various routines to help me identify the cause and help give me relief and help me to prevent future flare ups.

Oh those hot baths......heaven....love them esp. with lavender oil to relax and epsom salts to take the lactic acid from your muscles......love a nice hot shower in the am to loosen up the muscles for the day!!!! not that it always works!!

good luck on your journey...oh by the way biofreeze is also a nice relief to hot flared up muscles that won't behave esp if a PT has done you more damage!!!!!

Victoria

Ahhhh this is heavan for me. I have also found hot tubs are excellent...I feel very little pain when I am sitting in one of these babies (yeah for hotels with hot tubs when you are on 'holidays')...now just have to convince myself (and my BF) this is a good thing to get at home....

That said I ASSUME hot tubs are good - does anyone have any comments/experience with this that I should be aware of?