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-   -   Thyectomy, where to go & who to see? (https://www.neurotalk.org/myasthenia-gravis/67285-thyectomy.html)

dyerucf 12-23-2008 08:02 PM

Thyectomy, where to go & who to see?
 
Well I have decided to start looking into a Thyectomy for my MG. I am 27 years old otherwise healthy male and I am tired of feeling so darn tired and figured I need to do something about this. I used to be in the gym 5 days a week and enjoyed my high levels of energy. Now I am so tired all the time I figure I need to do something about this. So I called the Mayo Clinic and unfortunately they are out of network for my insurance. The Thyectomy will only end up costing me around $3000 out of pocket since that is my 'out of pocket' max for my insurance even for out of network. My question is how important is it hat I go to the Mayo Clinic to have this done? There are plenty of Thorasic surgeons that are in network and it would be great to save $3000 dollars for my upcomming wedding or honeymoon if possible. That being said, I am not to eager to bargin shop for a surgeon (i.e., "Thyectomy, aisle 3!"=). Does any one want to chime in on how important the specific hospital is in the procedure? I have United Health Care
'ChoicePlus' and live in the Central Florida area.

Thanks again!

Regards,

John D.

justdeb 12-23-2008 09:12 PM

John, Call Dr Allan Weiss's office, ask the receptionist who they use for thymectomy. They are located in St. Pete Beach.
The other and best option is michael mack in Dallas. but would recommend having the surgery at UTSW and not the other hospital he works at. UTSW has a whole team of neuros who spec in MG and can get you back in shape if things go wrong, unlike the OTHER hospital there. sigh. But Mack is pretty decent and does the VATS (3 small slits in the R flank toward back. One day in, one day out. Unless you have an issue and end up in the hands of incompetence as I did at that other hospital. And United healthcare used to have UTSW and Mack on the list of approved. So shouldn't be an issue there!
God bless
deb

dyerucf 12-23-2008 09:22 PM

Hi Deb,

I will call them after the holidays to speak with them, thanks for the heads up. Mind if I ask why Allen Wise's receptionists recommendation is the one for me?

Thanks

John

justdeb 12-23-2008 09:36 PM

John, Dr Weiss (a neurologist) see's many MG patients. (he diagnosed me after a very very long drive to see him and of course driving to florida for doc care was not practical in the long term----esp given the shape I am in now.
The team who does the thymectomies there in the hospital by his office are well versed in the special needs of the MG patient as well as the thymectomy itself. Lots of experience there!! And nothing beats experience. And have neuro close by who is versed in MG if you happen to get in trouble. So over all is a win win. I am sure you don't have to be his patient to get the fyi on who the surgeon is that does them. And the surgeon is responsible for picking the anesth team as well. And like I said this is old hat to these guys there. And to boot pretty sure they are in network for united health care. That is who I had way back when.
Deb

Rohm 12-30-2008 08:04 PM

Check Neuro Dept. rankings with US News & World Report
 
Hi!

After determining the top ranked Neuro Dept. in the U.S. News website, check if any are located in your area.

Then, research their web sites for details about their Neuro Dept and surgeons.

Other methods:

* go to MG Foundation of American and look for local chapters in your area. Then, ask for referrals for the local chapter.

* start a very visible thread like "Need Referrals for Thymectomy NeuroSurgeons in __________." This will get you a lot of referrals from members.

Hope this helps. Good luck on your surgery and wedding.

Rohm.


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