Hi guys,

I've been reading the numerous posts and replies here and have joined in now in hopes that perhaps some of you can give me some help/advice. I have had symptoms of TOS for approximately 20 years. As I'm sure that many of you have experienced, you really go through the ringer with this, as most physicians don't know about this. As such, I have been treated for severe headaches, been through several boughts of PT, have had acupuncture, massage therapy, cortisone injections, some "investigative" treatments (some of which were quite painful - none of which worked), etc., etc. Recently I went to an orthopedist who specializes in shoulder injuries as I've been losing significant ROM lately. He felt I have brachial plexopathy/TOS but told me that there really isn't a way to diagnose this or really treat it. I've heard this kind of stuff before ... I call them "god" diagnoses as they provide an explanation with no ability to be proven or disproven ... kind of like fibromyalgia and chronic fatigue syndrome. Mostly I think these are garbage because it really feels like the doc just wants you out of their office. Anyway ... sorry to be so cynical ... but this has been going on too long! What I am hoping that I can find here are some experienced TOS sufferers who have had good experiences with physicians/treatments as 1. I would like to have some hope and 2. if you know of anyone in the Philadelphia or NJ area (do not want to go to Hopkins) who you felt was able to adequately diagnose and treat you could you please provide me with that information? I would greatly appreciate it.

Also, in a previous search I found a small group (n=3) of docs at UMDNJ who appeared to specialize in TOS. For some crazy, crazy reason I can't seem to locate that page! If anyone knows about these guys, could you give me a shout? They sounded like they might be worth the trip up. Thanks in advance for any help you can give!

Check our Physicians stickie at the top of the page. There is a lot of helpful info in there.

from our drs list - http://neurotalk.psychcentral.com/thread135.html

New Jersey

Dr. Mandel
9th and Walnut St.
Audubon, NJ

Dr. Osterman
Hand Center
Audubon, NJ

Pennsylvania

Dr. Robert Young Rhee / Asst. Professor of Surgery
Presbyterian University Hospital
Pittsburgh, PA.
(412) 383 - 7074
E-mail: rhee@pittsurg.nb.upmc.edu

Dr. Allen Togut
166 Hanover St. Wilkes-Barre, Pa 18702
Phone: (570)824-2500
E-mail: ajtogut@epix.net
fax: (570)824-7910

Dr N. Gupta
UPMC Bower Hill Rd
Pittsburgh, PA 15228
Phone: (412)648-4000

another link for finding a vascular Dr -
http://www.vascularweb.org/patients/...an_Search.html

University of Medicine and Dentistry of New Jersey ??
UMDNJ (University of Medicine and Dentistry, New Jersey) is New Jersey's university of the health sciences and the nation's largest public university
http://www.umdnj.edu/

Waggydog,

I highly recommend Dr. Togut. I was misdiagnosed by a few doctors before meeting Dr. Togut. I went through countless tests and unnecessary surgeries (disc replacement) which was extremely painful. I, luckily, have a very good local neurologist who sent me to him. I had rib resection and scalenectomy in 2000. He only specializes in TOS. Also, he is a very intelligent and wonderful man besides be ing an expert on TOS.
Best of luck, Linda

I've had a good experience being diagnosed and treated by Dr. Scott Fried In Blue Bell PA (Southeastern PA, about 19 miles northwest of Philadelphia -- 610-277-1990). He is an osteopathic orthopedist and hand surgeon who specializes in upper extremity nerve injuries (and did two years of post fellowship training with Drs. Hunter and Whitenack at Thomas Jefferson University in the surgery and treatment of thoracic outlet syndrome and brachial plexus injuries). He believes surgery should be a last resort, and believes in both standard and alternative treatment options.

He is very thorough and caring. He will go over your previous medical records, then do a hands-on, thorough exam of your upper body and neck to check for any sort of orthopedic problem as well as specific testing for carpal tunnel, TOS and other nerve problems. His office will also do x-rays of your neck (to check for cervical ribs and any obvious bony neck problems), and wrists (to check for hand and wrist problems).

His physical therapy office will make any splints you may need for wrist or arm problems , as well as provide you with an arm support that Dr. Fried developed if he feels it will help you (it has really helped with my right arm). They also teach you how to perform nerve glides for the affected nerves in your arms (brachial plexus, median nerve, etc.) and gentle stretches, as well as educate you about how to modify arm movements and daily activities to minimize symptoms from TOS and any other nerve problems you may have.

He also has EMG/nerve conductivity studies performed (by an in-house expert) and refers patients to Dr. Baran (a specialist in physical medicine and SSEP nerve testing) for SSEP nerve testing and a second physical exam. From what I understand, SSEP testing checks the sensory nerves, which can show abnormal changes before the nerve is injured enough to show changes in the larger motor nerves that can be detected by EMG/nerve conductivity studies.

He recognizes the need for a team approach to treating TOS and other nerve problems, and refers patients out as needed for pain management, biofeedback, neurology consults, etc. He's referred me to five or six different specialists as needed (pain management doctor for pain medication, neurologist for neurological workup, etc.), who have seemed competent and helpful.

I haven't dealt with headaches from TOS, but the treatment I've received from his office and that of other specialists he's referred me to has greatly improved my pain levels at rest (especially the burning kind of nerve pain) and reduced many of the other distressing symptoms (numb/dead arm, hand flapping up and down uncontrollably at times, feelings of pressure under the arms, etc.) that I experienced before I saw him.

He's also written two books, Light at the End of the Carpal Tunnel and the Carpal Tunnel Help Book. The first book explains the basics of nerve injury in the arms and his philosophy of diagnosing and treating patients with nerve problems, including many anecdotal stories of patients he's treated. I first heard of him when I read this book at the local library.

Hope this helps.

ThreeForOne

I would highly second seeing Dr Togut. He was trained as a cardiothoracic surgeon, and developed such a heart for TOS patients that he essentially wrecked his surgical career. Hospital honchos wanted him doing big-bucks heart surgeries on wealthy citizens, the grateful type that are inclined to donate wings of buildings named after them. Dr Togut was spending his time on too many cash-strapped TOSers, and the surgery not only carries risks, a REAL cure, in terms of feeling just like before afterwards, is pretty rare. But Dr T saw there were plenty of Drs fixing hearts, and no one caring for us, and he carried right on doing the right thing as he saw it, God bless him!

The hospital found a bright young cardiologist to do things their way, and revoked Dr T's priveliges to make room for their new boy wonder. Thus, he
no longer practices surgery, but he is in practice seeing ONLY TOS patients, and his knowledge is just phenomenal! He has done over 1000 surgeries in his career, and can explain clearly the anatomy, and usually give a good idea of where your problem is, and what caused it. He spends 1 1/2 -2 hours or more on the initial appt, taking a detailed history, clinical and various testing, then sits down to explain his conclusions with you, and suggestions for treatment. He writes scrips, does triggerpoint injections and gives firm suggestion (read instructions!) for how to better manage your life with TOS.
He is very aware and honest about what a miserable condition TOS is, and the most compassionate Dr I have ever met.

For years he would spend one year a week in Denver working beside and observing Dr David Roos, the surgeon who introduced the modern trans-axillary approach rib resection, in order to try to duplicate the Vascular Institute's excellent post-op follow-up stats. He is also a colleague of Dr Schwartzman, a top neurologist in Philadelphia and Professor at Drexel University College of Medicine. Dr Schwartzman is a leading researcher in treatments for RSD, and the wait list to get into his program is 3 yrs or more. Because I have severe RSD, Dr T referred me to Dr Schwartzman, and that referral got me in to see him in about 3 months.

And even though Dr T did the surgery so long, he doesn't believe surgery is always the answer, or even usually, so he won't push you to have it, he very much believes it's a last resort option and it's your decision to come to.
I see him about once a year - I live in IL or it wd be more often!!

beth

Thank you all for your responses. I appreciate the time taken to reply (especially you other TOSers for whom I know that typing can be an uncomfortable task!!!). I have seen the stickie list and the multiple lists of docs on-line but I was (am) very much interested in hearing about the experiences folks have had with these docs specifically - good, bad or indifferent. That is extremely helpful for me as every time I go to see a doc and don't get any real help it makes it harder to put myself through it all again. Also, I recognize there can be some great docs out there who may or may not have been helpful to different patients so it is nice to hear about your experiences. I will take all of your suggestions/advice/experiences to heart. You've given me some hope which is what I really need right now! Again, thank you all so much!

Also, aproximately 1 year after surgery I was literally pain free. I was able to have my fourth child in 2002 with a completely normal pregnancy. I did schedule a c-section so I wouldn't aggrevate my neck.

I was completely pain free until March of last year. I drove my family from NJ to Disney almost completely by myself. The stress of the drive put me back into TOS hell. Dr. T. was not happy with me when I went to see him. The fact that I had been completely "cured" and did something so stupid by being so stressd was not a good thing.

We are driving to Disney again next month but I have learned my lesson and will make sure I have my husband help and my daughter has her license now so she can help. Also, little things like bringing a pillow to rest my arm on and stopping and changing drivers more often.

Best of luck to you. Having TOS does not have to be a life sentence as long as we pay attention to our doctors and our bodies.

Linda

Hi Linda,

Thank you for writing about your experience. Can you tell me - did Dr. Togut perform your surgery or did you have that done somewhere else? I really, really like the idea of surgery as a last option, but should I really need it, I do want to know that I would be dealing with an experienced and competent surgeon. It sounds like you have really had a fantastic experience with Dr. Togut. I've called his office today and had to leave a message - I hope they'll call back soon so I can make an appointment. He's 2 1/2 hours away but hopefully he will be well worth the trip! Driving can really aggravate the TOS so my boyfriend is going to drive me there and back (he's a real sweetheart!) - Shame on you for driving to FL all by yourself!!! I'm sure you'll bounce right back though! Best wishes to you!
Waggy

Please keep us posted on your visit to Dr. Togut.

I am hoping that through that visit you will get some new information that will be helpful, and that it will give you some hope for your own treatment plan.

We do care and welcome you to our little group!