Hi:
I'm new to the board. I've been dealing with TOS for three long years now. Like many of you, I'm sure, I've been to many doctors and therapists (it's up to 18 at last count), have been misdiagnosed (with cubital tunnel syndrome, which I even had surgery for, for nothing), and finally found a doctor who actually knew what TOS was and made the diagnosis. Since then I've been in PT for over a year and have made a tiny bit of progress but am now at the point where I'm considering surgery.

I consulted last month with Dr. Julie Freischlag at Johns Hopkins University. She thinks I'm a good candidate for a first rib resection/scalene removal. Has anyone on the board been treated by her? She's supposedly an expert in the field. I found her to be smart and it was a relief to explain my symptoms and have someone know exactly what I was talking about (a first). But I'm still unsure about the surgery step. Any thoughts about her in particular and surgery in general?

Thanks for your help,
Diane

Dr. Freischlag was formerly at UCLA, where she saw 800 patients a year for evaluation of TOS. She was selected to be the first woman chair of surgery at Johns Hopkins, a huge honor. She carries an excellent reputation.

Hope this is helpful.

I do not have personal experience, I did hear her name mentioned before.
I always say it is best to have two opinions. Especially with TOS surgery. Surgery does not cure, it helps. Some symptoms are reduced. Unless you have anomalies as extra ribs or a anomalies in your body that can be removed. My daughter had several problems with short fibrous bands being caught in spasms brought on by the tos injury a stretch injury.

She had neruo damage, and not vascular, no cervical ribs. The sick nerves do not get healthy, the compression on them is hopefully lessened and frees up the space behind the collar bone and in front of the first rib where they travel. This space is tiny, removing the riob is hoped to free up. The same with the scalene, to free where the brachial bundle travels/

For a while things were greatly improved, but she had a lot of problems with scar matter, adhesions entangling the nerves. A second clean up surgery was done and pericardial patch wrapped on the cervical nerves. But, the scar mater entangled anyway.

I have a tos injury, but not the nerve damage my daughter had. I have chosen not to have surgeries, but my case in not as severe as many on here. I was off work immediately after my accident and did not suffer cumulative damage. My CT symptoms, and the knife in my back are bummers, but I get by with trigger point injections, valium for muscle spasms, topamax for head pain, percocette as I need, generally days of increased activity. In flares Toradol is a life saver. It is a strong anti inflammatory, nerves react better then to opiads for its use.

Every ones body is different; generally by the time they decide surgery is needed their life is greatly restricted.
It is not like taking out tonsils and the problem is removed. One always has TOS, but to differing degrees its long term affect is on the person. Some go in remission, many for years.

One thing is if your occupation or hobby brought on the onset of symptoms, and you return to this job or hobby, likely the same results will be aggravating the nerves.

The cervical nerves travel from the cervical spine across the traps, behind the collar bone all the way to the finger tips a single cell. That is why often a mis-diagx is made. Anywhere there is a hinge symptoms can appear. The shoulder, elbow, hand.

How close to Phila are you to see Dr Schwartzman or his associates?
Good luck with whatever you decide,
Dianne

I had a first rib resection/scalenectomy in August 2004 with Dr. Freischlag and I have had amazing results from this surgery. TOS does not affect my life at all anymore. Granted, not everyone has this same result, but for me...surgery was the BEST thing. Dr. Freischlag is the top of the top...she is a great doctor and I would HIGHLY recommend her to anyone. She does this surgery all the time and is an expert in TOS!

Welcome to both of our new members !

It's always a good idea to get at least 2 opinions before most surgeries - and this is a pretty major one.

I'm sure most with TOS that do have successful surgeries don't post on forums like this very often.

But sometimes it doesn't work, or the wrong area, or not all areas were decompressed, or post op scar tissue will develop causing continued or chronic pain and symptoms. Or even a inexperienced surgeon - always go to a well known and expert TOS surgeon.

There are many things to weigh - pros and cons before going with surgery for TOS.

Just want to mention there is a possible risk of RSD/CRPS and you should talk with dr about that also.

Oh yes! Ditto to that. This is a MAJOR surgery and not something to be taken lightly. Recovery is several months (I had 3 months off work) and requires dedicated physical rehab. But, I just wanted to encourage everyone out there...that some people do have successful TOS surgeries (myself being one of them), and Jo is right...most people who have successful surgeries probably don't post on here, so people never get to hear the success stories!

Having a good doctor who knows a lot about TOS is the best thing you can do for yourself. I saw several who just didn't know what to do with me (I had a blood clot as a result of my TOS) before I found Dr. Freischlag. Which, coincidentally, I discovered her as a recommendation by someone on the old BT forum (I used to post there from time to time). So again - she is HIGHLY recommended. Also note - I know that she'd doesn't rush to operate on everyone...she'll only do it if she really thinks you're a good candidate. So...if she said you're a good candidate...I would take her word for it!

A random side note... yesterday I had my three year post op check up with her, and there were several interns and med students (at Johns Hopkins) that observed my ultrasound and were in the room while I met with Dr. Freischlag, and I found that very encouraging... doctors in training who are learning about TOS!

Welcome to our forum!
Yes, Dr F was head of vascular surgery at UCLA.
Someone who used to post here thought that would make her the best in the group.
Her name started out as lisasuffers and after her surgery she changed her name to ribless1der.
I could try to see if she could post her experience.
I do remember very well that Lisa's experience was not a good one. When she tried to tell Dr F her complaints they were not addressed (multiple times)

Of course this is the internet and I don't know you and you don't know me. I have spoken to Lisa on the phone and she told me her problems herself.
It is always best to get 2 opinions, especially with a surgery this risky (which I have had in 2004)

I don't mean to start a war on this forum as everyone is very passionate about their choice of surgeons. I felt is was important to relay Lisa's experience.
Neurogenic tos is very difficult to treat, the results seem better with vascular tos from what I have read.
Best wishes.

Thanks for giving those names - I found a link to some riblessrider old posts.

click for the cached version {under the main link}
http://www.google.com/search?q=rible...ient=firefox-a

Yes, even excellent surgeons will have a poor outcome occasionally for whatever reason. There are so many variables.

I feel that I must let you know that I had bad experiences with Johns Hopkins, even though i had a real "in". Not with Dr. F, I never got that far. However I had very bad experiences with the pre- operative tests, EMG, and scalene block, etc. and got so turned off that I decided not to continue with that institution. mainly had to do with the residents doing all the work with no oversight- scary. Please feel free to PM me for more detail.

btw, i recently had surgery in denver that went well.

The first post is another ribless1der from Tenn.

The 2nd and 3rd posts are from ribless1der from CA and is Lisa that I talked to.

She has listed her e-mail so I'm assuming she is willing to be contacted.

Yes, I'm sure that some surgeons have badcomes BUT they should return the patients calls and be helpful to the patient when they come into the clinic. If the patient is having problems they need to be willing to follow up with the patient and see to it that the patient gets the help they need( be it pain management, MRA, etc.)
The patient needs direction as this is a very complicated problem. The surgeon is responsible for post op care and follow up. The patient should not be left to figure out the next step.