Dear Friends,

I haven't actually logged in in awhile ,but I read the posts often and cannot begin to thank each of you who take the time to post and share your thoughts and advice. You all are a godsend!!! I was doing so much better for awhile under the care of a wonderful physical therapist who went out on
an early maternity leave and has not returned. Since her departure my pain and swelling and everything else has gotten bad again! I am going to try massage and I was hoping someone could let me know of any certain type of massage that has worked or NOT worked? Also, because I have swelling again above my collar bone, at the base of my neck, my family doc has admitted that this is totally out of her scope now and would like to send me to Philly ,to Penn or Jefferson .... one of the major hospitals..... I've seen a neuro, an orthopedic, should I see a vascular doc for the official visit? The REAL diagnosis???? Thoughts? Advice??? I am just amazed and humbled by how kind and wonderful everyone on this site is and I am truly grateful for all of your help and support!!! In our small state of Delaware I can't find many who have heard of or experienced anything but maybe vascular TOS. God Bless and hang in there all!!!! Beth in DE

hi beth,

i want dimarie and mark to adopt me and become my mommy and daddy so that i can move to PA. now, is that too much to ask? these folks are so selfish, i'm tellin' ya!....sheesh

it's just such a good state to be in if you have the blasted fortune to be afflicted with this TOS nonsense!!!

beth, i'm terrible at geography, but you've hit the motherlode if they're willing to send you anywhere near the following top, top TOS specialists:

suparna damany at hands on healing in allentown, 610.821.9135. this is a state-of-the-art rehab clinic from what i am told; many travel there to stay and receive tx for weeks to months, with good success. including failed TOS surgery cases, which says a LOT. you well know this if you've been reading the boards for any length of time (and i suspect that you have, teach!). she is just aces from what i hear. co-authored one of the finest books on the market on RSI. googlebreath her.

dr. scott fried (another author) at the upper extremity institute in blue bell, 610.277.1990. the electrodx are very good there, i'm told - i think dimarie has direct experience if i'm not mistaken? i noticed the one time i glanced at dr. f's CV, which has been a while now admittedly, that he has a background in pain management or at least in the study of chronic pain, which of course serves his TOS patients very well. i believe he started in neurology, not 100% sure, and that he is a surgeon. not saying he would be the surgeon for you if it comes to pass that you need TOS surgery mind you, just that for diagnostic purposes he might be a very good choice here. (i don't know enough about him to say either way on the TOS surgery score - but that would be your call anyway, right? way too early to even think about anything like that!)

dr. allen togut seems to have 2 listings, one in kingston, 570.288.7750, the other in wilkes-barre, 570.824.2500. dr. togut is a retired thoracic surgeon (top TOS doc, i'm 100% on this one!) and obviously remains an excellent diagnostician. he is totally plugged into the local treating medical community and far beyond it. he is well-loved by his patients and very well respected by his colleagues. if he cannot help you, he will be able to point you in the right direction.

this is true of all three of these excellent people, actually.

sorry about that maternity leave, beth! i used to have a chiro whose wife was my treating psychologist. when they went away on vacation i was totally f-cked!, as you can imagine. one other option might be to look for a feldenkreis or a hellerwork practitioner through their respective national databases, as any kind of bodywork that helps you with postural issues, according to my excellent PM doc anyway, will be very beneficial for you. you can use the "search" function in the upper right hand corner of the page to find some threads on this topic if you'd like to read up on it; this type of stuff can be used in conjunction with PT or OT or as a stand-alone measure and some TOS'ers have had great results with it. i wish you good luck finding a most excellent person to work with you. what is that saying? when the student is ready the teacher will appear. ha! perfect!

as far as massage goes, i can only speak for myself, as some TOS'ers don't tolerate deep tissue work and i happen to l o v e it. since finally being forced to give up the ghost and go out on disability a couple few years ago though, i find it hard to afford "my favorite finn" who does these great swedish massages for an hour...

and so i've switched to thai massage, which is about half the price here in los angeles and still gives me that deep myofascial workout my body seems to need, to keep the blood moving. thai massage is described as being rather like passive yoga. i always ask them to spend extra time on my neck, as that is where i hold the most tension and muscle spasm, always have done.

i don't know if it would be the right thing for you though, beth, or at least maybe not in the areas where you are swollen, like over the clavicle. definitely speak to your doctors about this first.

or ask martha; she knows everything and is always sticking her nose into everyone's business anyway...

(JOKE! that was a joke, martha! i had to get you back for making that crack on the doc ellis post earlier. which, by the way, was totally uncalled for and i was sooooo very hurt by that. what a sick mind you have, you wicked pretend christian, and on a sunday, too. well! i never! hmmmmph!!!)

so anyhew, beth, we are a totally sober crew here as you can see. ask the amish about us. (well, don't mention martha's name, she got busted selling them tylenol last year over the internet....)

seriously, i think it's wonderful that you're pursuing some real answers for yourself. school is out! yay! i only wish i knew PA better, but we do have more than a couple of TOS'ers (unfortunately) who live in that great state and can i'm sure give you much better info than i can about the specific hospitals you mention as well as which top TOS doc practices in what city or out of which hospital, etc.

i really don't have a clear idea, i'm afraid, of what's close to what. but i will say this. even if you have to take a day trip on the train of several hours to get to one of the above 'big guns' or to someone else one of us has recommended to you because they know TOS and have made it a specialty in their medical career...it's worth the time, it's worth the effort, and it's well worth the money to go and see that individual, versus the one which MAY be more convenient, or who SAYS they can help you just as well but nobody on neurotalk has never heard of before.

because it's PA you're talking about. that IS thoracic whatlet? territory, after all! you're going to the promised land, woman!!!!

let me know if you decide to hang in allentown with suparna for the 6-8 week tx plan, and i'll come join you.

serious!

alison

Hey Isn't the real live and in person Sharon Butler also in PA somewhere?
maybe I'll have to look her up...

wrote a great book on TOS, has some great hellerwork references.


her website

Paoli, PA, suburb of Phili according to the "my story" page.

I have had a lot of luck with Hellerwork. Not all fo the changes have been long lasting, but they certainly are good for relief of pain. It is good for much more than TOS, as a good hellerworker can work out all type of kinks and tight spots, with the end goal being better sturctural alignment for your whole body.

Myofascial release (available from some specially trrained massage therapists) is a not so distant type of massage. Not really very relaxing to have done, but the results can be very good.

good luck.

Johanna

When I had a rib resection and scalenectomy in 2004 in Denver Dr Annest had me seeing a wonderful massage therapist named Jan. She was trained in neuromuscular massage, acute/chronic pain relief and stress reduction.

A few months ago after spending 5 days in the hospital for an asthma attack I was really a big muscle spasm and thought I might benefit from some massage.

I started looking for a massage therapist that was trained in neuromuscular massage. Looking at the website of the alternative medicine expert Andrew Weil M.D. I saw a referral site this organization for massage therapists.
I continued looking under neuromuscular massage and found a massage therapist that worked in a physical therapy clinic ( now I'm thinking whoopee! maybe there's some insurance coverage here)

I found a massage therapist that belonged to this organization and was very well trained. The great part of it is he works about 3 miles from my home-even in the same city !

He really has magic hands ( I say) he does as good a job on me as my previous physical therapist who had her Ph.D. in physical therapy. He does not flare me up and does an hour massage. It is just too good to be true.
I hope this website helps you

p.s. I just learned with this new massage therapist you are supposed to tip a massage therapist if you can. I asked the receptionist and she said that they don't expect it but it is nice if they do a really good job
I asked her how much to tip and she said $10 ! Well, when I think about it he does charge $70/hr so that is about right.
He was really nice about it when I told him I haven't worked in 7 years and was on social security.I try to tip him if I can.

I just never thought about tipping because as a nurse I would never accept a tip from a patient in fact I would feel kind of insulted. The massage therapist I used to see must have thought I was really cheap.
http://www.amtamassage.org/findamassage/locator.htm

I don't know where you are located but this is the one I found.
http://www.appointment-plus4.com/ap/...ssword=&action=