Picking a Surgeon
 

After nearly two years of horrifying pain, I think that I've finally been diagnosed with TOS. I am in Los Angeles and I'm now searching for a surgeon to help me. I know that vascular surgeons perform this often, but I really want a neurosurgeon to perform the operation. In my research, I've found only a few in this area that do the procedure (or at least advertise that they do) and I have no idea how to choose the right one, aside from a brief personal meeting/consult.

None of them accept insurance, they are all considered pioneers in the field, all of them have great reviews and then even more horror stories.

Dr. Sheldon Jordan

Dr. John Knight

Dr. Aaron Filler

Dr. A. Lee Dellon in Nevada & Maryland

Guidance? Aside from telling me to meet with all of them and see who seems the most compassionate and helpful? They each have $500-700 consult fees. Also, any ideas of price ranges of TOS surgeries?

Thanks

Sheldon Jordan is not a surgeon. He is a neurologist who treats TOS non-surgically (at a high cost). If your insurance has out-of-network coverage, they may partially reimburse you but you have to submit everything yourself. He charged me $550 for the initial consult.

What is your reasoning for wanting a neurosurgeon over a vascular surgeon? Even my neurosurgeon advised me the majority of TOS experience lies with the vascular guys.

I would avoid Aaron Filler. I haven't heard of the other guys on your list.

There is a TOS neurosurgeon at UCSD which should be covered by most insurance -The UCSD Center for Thoracic Outlet Syndrome

Also, please post your symptoms and how you've been diagnosed. We will be happy to help you navigate this journey.

Thanks guys, here's a brief time table of my symptoms:

9/2011 - Slight discomfort in left shoulder blade region

8/2012 - Pain in left side neck

9/2012 - More pain in left shoulder blade and left side neck

11/2012 - More pain and mirrored symptoms developed right side neck and shoulder blade and front of neck

12/2012- Suprascapular nerve release left side (bad diagnosis, no effect)

4/2012 - Extreme pain both shoulder blades, both sides/front of neck

I have attached many of my reports and records so that you may review them.

Mainly because I feel if there is something terribly wrong with my nerves, that they will be able to handle the transfer/repair

Any idea of how you got TOS?
repetitive motions, static desk postures, sport related, whiplash or other injury?

Any advanced PT or bodywork/expert chiropractic explored yet?

What kinds of tests have you had so far?

The more info you can share , the better we can help you.

Sorry I didn't give more info, it's just that the pain really deters me from doing much typing. What I think brought this all on was riding a scooter with a heavy backpack to school for about a mile a day for a month. I was bent over to hold the handle bars and probably carrying at least 35 or 40 pounds, sometime over just one shoulder. It was probably a combination of this repetitive movement, poor posture, slightly rounded shoulders, and pushing too hard in the gym.

I've seen 3 really good PT's with 3 very different approaches, several chiropractors, massage therapists, many orthopedic surgeons, spine surgeons, neurologists, and neurosurgeons.

My EMG's don't show much beside mild cubital, MRI's of brachial, spine, and shoulders show nothing, and I'm going in for MRN at the end of this week.

Sorry about the "I have attached many of my reports and records so that you may review them." I took this from an e-mail that I sent to a doc recently.

EMG & MRI are usually neg for most TOS, but good that no other issues to confuse /complicate things.

Mild cubital could be showing due to "double crush" those sx may show due to higher up issues than elbow.

I didn't have high pain, but very limited use and moderate discomfort, due to multi RSIs and neck/shoulder strains.
It still took approx 2.5 yrs to get to a stable point. (some delay due to work comp & 2003 limited Internet info back then)

It did take many sessions of good PT, posture work, chiropractic and focused self care.

Did you find the TOS sticky threads? Drs & PTs, Triggerpoint, useful info? I suggest reading those as sort of a crash course for TOS and therapies.

Did PTs, or any one, look for trigger points that might be some of the problem?
Triggerpoints and soft tissue "stickiness" can be a big cause of many sx & pain.
I think that can be some of the reason why some surgery outcomes are poor.
They might be able to remove some adhesions during surgery, but not all, and it can return in time.

Ok I will check it out. I'm going in to see Dr. Brown tomorrow morning

Hi fdup- just saw your post. I am in L.A. and went through all the dr's. I have also had symptoms for 2 years and 1 year diagnosed. Read my Thread:
JKL'S TOS Journey or How I am seeing all the doctors in L.A.

Most of these Dr's you listed are not surgeons- Better to look on the threads hee than to go by the internet. Dr. Jordan is one of my dr's. He is a good neuro and TOS pain dr. but expensive. I had the scalene block test and botox with him and I may do some other injections. I also see a pain dr. at Orthohealing in L.A. for Trigger pt injections. Have you done PT? I have had good luck with Dr. Ando in OC but he is far. i will be trying some new ones up here.

I saw all three surgeons here in L.A. last year and decided againt surgery for now. I saw Dr. Williams, Dr Filler and Dr. Jordan for Diagnosis -they are all TOS nonsurgical neurologists and decided to go with him. Dr. Knight is a hand surgeon and not a TOS specialist. I second Marcs opinion on Dr. Filler.

Surgeons here in L.A.:

Dr. Gelabart-UCLA
Dr. Ahn-Westwood
Dr. Mckenna-Cedars

In O.C.-Dr. Angle

San Diego- Dr. Brown
Dr. Braun-

These are all vascular surgeons except Dr. Brown. The neurologists only will do scalenectomy - and if there is any need to take out the first rib- they will have to get a vascular surgeon to come in. There was a patient on this forum who this happened to-

let us know how your appt goes.

Hey JKL thanks for the info. I just saw Dr. Brown today and he gave me my first official TOS diagnosis. He'd like to perform a scalenectomy and as you and others have said, won't do anything with the ribs. He said if he finds that something is going on with the ribs during surgery he will be able to do it, but will wait until the next surgery to do so. Yikes..

I'm seeing a vascular surgeon named Dr. Clark Fuller tomorrow and then Dr. Angle on Monday. Also Mayo Clinic just admitted me but the appointment isn't until May, so I'm going to see if there's anything I can do to get that bumped up.

How did you find Dr. Clark Fuller? Let us know how it goes.

I think I found Dr. Fuller by searching something along the lines of "Los Angeles TOS Vascular Surgeon".

I just got back from his office and had a very different experience. He said that he doesn't have enough information to conclude TOS. He did not look at any of my imaging and instead kept insisting on reports only- I didn't have my brachial plexus MRI report with me, just the CD. Also, his exam of me lasted about 30 seconds and did not believe he found anything, compared with Dr. Brown's half hour that he spent with me leading him to in fact find something. Upon leaving, he told me to send him my reports and also my MR Neurography report after I get it done this Friday. I won't be returning.

Tomorrow I'm seeing USC Vascular surgeon Dr. Fred Weaver. My orthopedic doctor sent me to him after I sent him an e-mail yesterday with my new diagnosis from Dr. Brown.

I believe Weaver treats more vascular cases than neurogenic. Here are some old posts:
neurotalk.psychcentral.com/showthread.php?t=17070
http://neurotalk.psychcentral.com/sh...555#post100555

I havn't heard of Weaver or Fuller.Where is Fuller? Make sure they are very experienced with TOS before you let them do surgery. I would recommend Dr Gelabart or Dr. Angle.

Fuller is in private practice I believe at an office at Robertson and Wilshire. Seeing Angle next week. Also I just got an appointment at Mayo Clinic for May 7

I just got back from Dr. Weaver at USC. He found my lack of pulse when holding my arm up and back. He said that he thinks its TOS and ordered a scalene block to confirm. He strongly advised against doing a lone scalenectomy because he believes full removal of both scalene and first rib is the most sure way to relieve compression. He wants to see the results of my scalene block and believes we should proceed to surgery. Just another option!

Next up is MR Neurography tomorrow and then Angle on Monday. Also calling Mayo Clinic every day to see if they will bump up my appointment

Where will you be having your scalene block?

They are working on getting the scalene block approved over at USC. I'll see how soon of an appt they give me otherwise maybe I'll go with someone that Angle recommends.

Best TOS neurosurgeon
 

The best doctor to diagnose TOS is Dr Aaron Filler. He is the best in the field. He is expensive and you can get your insurance to cover if you ask for GAP exception. He has the most advanced procedures. I have had surgery by Dr Filler. I wouldn't be alive or have left arm without Dr Filler's expertise. He is far the most knowledgeable about TOS and other nerve conditions.

I doubt you will respond since you are likely employed by Dr. Filler or Dr. Filler himself (stumbling across this thread by googling Aaron Filler).

If you are for real we'd appreciate some actual details of your condition prior to surgery. I can't imagine why you wouldn't be alive as I have been told by reliable sources that Dr. Filler hands off the complex vascular cases to more qualified vascular surgeons.

I would argue with this statement. Dr. Jordan does the same procedure(scalene block) for diagnosing TOS for 1/10 of the cost and is much more respected in the field. The $15,000 expensive MRI neurography he espouses is(I have been told) outdated, as most now are ultrasound guided. I would be wary of this info-

My surgeon was Raphael Bueno at Brigham and Women's Hospital in Boston. He was excellent and everyone in the hospital was great. I had three opinions at 3 Boston Hospitals, but after reading the risks of surgery I decided I would be better off with a thoracic surgeon as opposed to an orthopedist, neurosurgeon or vascular surgeon (just my personal opinion). I made the right choice because one of the risks of surgery is pneumothorax (collapsed lung) and I developed one. It happens in about 30% of first rib resections. Dr. Bueno told me he leaves a chest tube in all of his patients while they are under anesthesia and that way if they develop a pneumothorax the tube is there and ready to use to reinflate the lung. If it is not needed it gets pulled the next day. However, orthopedists and vascular surgeons are not trained in chest tube placements. If you develop a pneumothorax after the surgery, as many do, most physicians will put them in with some sedation, but not anesthesia. As a trauma nurse in Boston I have heard the screams of many patients through the years who have chest tubes put in without anesthesia. It is almost a barbaric procedure. So mark my word, you want a surgeon who knows how to do this while you are anesthetized. My husbands friend had a first rib resection ten years ago for TOS and developed a pneumothorax the next day. He said having the chest tube put in while he was awake was far worse than the actual surgery. Whoever you go to, do your research. It is not exactly a small procedure. You want to make sure you go to a skilled surgeon. Best of luck and if you have any questions please do not hesitate to ask.

Thanks for sharing.

I believe vascular surgeons (especially those who regularly perform TOS procedures) are trained and experienced in placing chest tubes and dealing with pneumothorax. I would agree that neurosurgeons and orthopedic surgeons are less likely.

[
Did you go to mass general?


QUOTE=nospam;979568]Thanks for sharing.

I believe vascular surgeons (especially those who regularly perform TOS procedures) are trained and experienced in placing chest tubes and dealing with pneumothorax. I would agree that neurosurgeons and orthopedic surgeons are less likely.[/QUOTE]

Oh I did not know that about vascular surgeons!! Yes, definitely an important skill for this type of surgery :)

I believe vascular surgeons (especially those who regularly perform TOS procedures) are trained and experienced in placing chest tubes and dealing with pneumothorax. I would agree that neurosurgeons and orthopedic surgeons are less likely.[/QUOTE]