NeuroTalk Support Groups - Picking a Surgeon

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Thoracic Outlet Syndrome (https://www.neurotalk.org/thoracic-outlet-syndrome/)

- - Picking a Surgeon (https://www.neurotalk.org/thoracic-outlet-syndrome/186571-picking-surgeon.html)

Quote:

Originally Posted by fdupshoulders (Post 974121)

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

Quote:

Originally Posted by fdupshoulders (Post 972956)

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

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.

Quote:

Originally Posted by Msudawg89 (Post 978239)

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.

Quote:

Originally Posted by Msudawg89 (Post 978239)

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.

Quote:

Originally Posted by fdupshoulders (Post 972956)

Quote:

Originally Posted by Lava1222 (Post 979551)

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]