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-   -   JKL'S TOS Journey or How I am seeing all the doctors in L.A. (https://www.neurotalk.org/thoracic-outlet-syndrome/169611-jkls-tos-journey-am-seeing-doctors.html)

parbie 05-30-2012 08:33 PM

Dr. Sanders
 
FYI Dr. Sanders in Denver no longer performs surgery. I was doing some research and found this out last week.

jkl626 05-30-2012 09:21 PM

Quote:

Originally Posted by parbie (Post 884583)
FYI Dr. Sanders in Denver no longer performs surgery. I was doing some research and found this out last week.

yes but he will consult with you over the phone and he supervises Dr. Annest. ther is also Dr. Brantigan there.

nospam 05-31-2012 03:52 AM

Quote:

Originally Posted by jkl626 (Post 884561)
I saw Dr. Gelabart at UCLA today and he is by far my favorite Surgeon out of the 3 that are in L.A. A really caring and nice man. Fairly thorough although did not look at my mri's,just saw reports.Asked alot of questions.Kept saying "Interesting" when he was examining me He said that Dr. Jordan usually only refers patients to him that have failed his injections .etc, He saw no arterial and venous symptoms. Suggested I try Facet Block injections or Cervical Epidural just to rule out the disc bulge and stenosis being the cause of my pain before doing Surgery. He does Trasaxilary Rib Resection and partial scalenctomy.He thinks this is the superior way to go. says he has a 90% success rate. Once in a while a patient comes back to get a full scalenectomy. He says the scalpular pain only has about a 50% chance of getting resolved but arm pain is usually better. he didnt know statistics on the shoulder pain (Traps,pec minor) etc because not everyone has that pain so they dont keep track of that. He relys mostly on the scalene block test( They all do) so I would want to repeat that if I decide to proceed with surgery since I think it was questionable weather it worked or not. He didnt think Ahn's Angiogram or angioplasty test was a good idea,or that the MRA was necessary. he was so-so on a Mac or SSEP test.(Has anyone had either of these? Were they helpful in the Diagnosis? Where did you have them done?I'm particulary interested in the Mac,because my pec Minor is really tight.)
He gave me a 3 page doc on TOS which describes all the tests etc.

I agree that you should try the facet and epidural injections to know what pain is coming from where (I got relief from my cervical symptoms from the facet blocks). Gelabert wanted me to do SSEP only because I had a negative scalene block previously. He also wanted to repeat the scalene block as well. He said the MAC wasn't necessary as I had a recent EMG. He referred me to David Fish at UCLA for this testing. It took weeks for Dr. Fish's office to receive the official referral from Gelabert's assistant and offer to schedule me for testing. By that time I had found Dr. Angle and was already scheduled for surgery. Dr. Fish's office seemed very nice though.

Dr. Ahn and Angle were unimpressed that my scalene block was negative as they felt it was not a reliable indicator for surgery. My problems turned out to be my ribs and not my scalenes. I wish I would have learned more back in 2010 when I failed the scalene block and I thought I didn't have TOS.

nospam 05-31-2012 04:13 AM

Quote:

Originally Posted by jkl626 (Post 884561)
If I had to choose today I would go with Dr. Gellabart,but luckily I dont. i have been doing PT with Dr Ando(No-spams PT) and I am feeling better overall but have had a couple of flare-ups lately. i am going to give it a few more months and if I still cant go back to work by August or September I will
consider it again. Of course I go back and forth depending on how bad the pain gets.This summer i may check into the Denver Dr's or at least call Dr. Sanders on the phone.

Both Dr. Angle and Dr. Fujitani (UCI) had nothing but great things to say about Gelabert, he is well respected. Just be clear with him that you don't want residents performing any of the surgery if you go that route. Angle said his surgical method is basically identical to Gelabert's. He trained under Gelabert and Ahn.

I would have gone to Denver if scalenectomy only would have been an option for me. I'm just thankful that I found Dr. Ando to find my rib issues and found Dr. Angle for his expertise local to me without me be delayed by the slow moving University systems.

Too bad Ahn's bedside manner and patient focus is not what it could be. The engineer in me really identifies with his methods but I can't be his guinea pig or subject my family to dealing with him if I have a surgical complication. On the plus side, he did give me his cell phone number (after Misty and I cancelled our angiogram procedures and criticized his bedside manor). :p
Ahn could very well be the most skilled TOS surgeon in SoCal, but no one is really willing to take a chance with him when there are other viable options.

nospam 05-31-2012 04:21 AM

Dr. McKenna is not covered by my insurance so I never saw him.

nospam 05-31-2012 04:24 AM

Quote:

Originally Posted by jkl626 (Post 884561)
I hate how I have to do these invasive injections just to rule something out. I was also told they could make things worse for the nerves and muscles by Dr. Gart(Pain Dr. at Cedars)

I wasn't aware of this. I was always told that these injections were low risk, high reward.

Anne4tos 05-31-2012 09:39 AM

Quote:

Originally Posted by nospam (Post 884685)
I wasn't aware of this. I was always told that these injections were low risk, high reward.

Another reason why TOS is still not solved, a consensus on diagnostic testing still can't be reached.

I'm a NoCal patient and I can't even find anyone here to give a scalene block. I've heard of someone near SF, who potentially gives them, but they're unrelated to any TOS expert in the area.

I've been told by multiple Doctors what JKL heard at Cedars. Sticking any needle or substance in the BP area and scalene triangle is not a good idea and they will not perform an injection. My scalenes showed as mildly hypertrophied on an MRi/A/N, so don't know if a block would have any effect on me....then again, another whole group of Doctors would throw my MRI away as hogwash. :rolleyes:

nospam 05-31-2012 11:57 AM

Quote:

Originally Posted by nospam (Post 884685)
I wasn't aware of this. I was always told that these injections were low risk, high reward.

I was referring to cervical epidural and facet block injections. I don't think there is much to fear with these routine cervical procedures.

jkl626 05-31-2012 12:22 PM

Quote:

Originally Posted by Anne4tos (Post 884749)
Another reason why TOS is still not solved, a consensus on diagnostic testing still can't be reached.

I'm a NoCal patient and I can't even find anyone here to give a scalene block. I've heard of someone near SF, who potentially gives them, but they're unrelated to any TOS expert in the area.

I've been told by multiple Doctors what JKL heard at Cedars. Sticking any needle or substance in the BP area and scalene triangle is not a good idea and they will not perform an injection. My scalenes showed as mildly hypertrophied on an MRi/A/N, so don't know if a block would have any effect on me....then again, another whole group of Doctors would throw my MRI away as hogwash. :rolleyes:

What about Dr. ellis?

jkl626 05-31-2012 12:25 PM

Quote:

Originally Posted by nospam (Post 884786)
I was referring to cervical epidural and facet block injections. I don't think there is much to fear with these routine cervical procedures.

Marc, how did you get finally diagnosed if your scalene block was negative? Mine may not have been successful either thats why I will probably repeat it. I will of course do the facet and or epidural before I commit to surgery. Just not there yet,keep hoping Dr. Ando can help me.


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