Mayo Clinic and Apnea
September 28, 2009 12:16 PM Subscribe
The Mayo Clinic and Central NS Sleep Apnea - has anyone had any experience there with any of the following: consultation, evaluation, treatment or just plain contact for informational purposes?
After a long, long battle to convince doctors that obstructive sleep apnea is a wrong diagnosis, I've finally been diagnosed with Central Nervous System Sleep Apnea and had a change of machinery. However, I am still having difficulty with the CPAP (or whatever the specific version of CPAP for CNS Apnea is..) being an effective treatment. In talking with my therapist, she suggested that contacting the Mayo clinic for a more rigorous diagnosis and possible exploration of new/experimental treatments might be worthwhile. Has anyone been down a similar path? What's the best way to start? A detailed email to someone in the right department?
After a long, long battle to convince doctors that obstructive sleep apnea is a wrong diagnosis, I've finally been diagnosed with Central Nervous System Sleep Apnea and had a change of machinery. However, I am still having difficulty with the CPAP (or whatever the specific version of CPAP for CNS Apnea is..) being an effective treatment. In talking with my therapist, she suggested that contacting the Mayo clinic for a more rigorous diagnosis and possible exploration of new/experimental treatments might be worthwhile. Has anyone been down a similar path? What's the best way to start? A detailed email to someone in the right department?
Response by poster: No, it's not a BiPAP. And I'm not looking for advice on apnea. I'm looking for advice on speaking specifically to the Mayo Clinic.
posted by spicynuts at 12:50 PM on September 28, 2009
posted by spicynuts at 12:50 PM on September 28, 2009
My husband was diagnosed with severe central sleep apnea and was prescribed a vpap machine (specifically this one). It has done wonders. He went from 190 apnea events per hour (!!) to 15--which his doctor considers acceptable given the severity of his apnea.
At the time (3 years ago) they said it was new technology, but they were having much more luck with the vpap on central apnea patients than the cpap.
Good luck!
posted by Kimberly at 12:54 PM on September 28, 2009
At the time (3 years ago) they said it was new technology, but they were having much more luck with the vpap on central apnea patients than the cpap.
Good luck!
posted by Kimberly at 12:54 PM on September 28, 2009
(Sorry about the no Mayo advice, just thought I would give you some info to discuss with them if you pursue it. It took my husband 2 sleep studies and tons of trial and error to get the correct set up.)
posted by Kimberly at 12:55 PM on September 28, 2009
posted by Kimberly at 12:55 PM on September 28, 2009
I've used a CPAP for a long time, it never really seemed to help. Then I got the Opus nasal pillow mask by Fisher & Paykel. Now CPAP works.
Thank FSM.
posted by funkbrain at 1:01 PM on September 28, 2009
Thank FSM.
posted by funkbrain at 1:01 PM on September 28, 2009
Husband of Kimberly here - I went through a number of masks as well, I think upwards of a dozen. Everything from a full face mask used for coma patients to my current nasal mask.
I would also check to see if there is a REALLY good sleep clinic in your area. Hopefully, most (if not all) of the costs should be covered by insurance. I think the most important thing at this point is to get the right diagnosis and the right treatment options. The machine and mask are secondary.
posted by Jim T at 1:18 PM on September 28, 2009
I would also check to see if there is a REALLY good sleep clinic in your area. Hopefully, most (if not all) of the costs should be covered by insurance. I think the most important thing at this point is to get the right diagnosis and the right treatment options. The machine and mask are secondary.
posted by Jim T at 1:18 PM on September 28, 2009
Response by poster: FYI...machine is a VPAP Adapt SV...which means it's a variable pressure machine that adjusts pressure based on breathing patterns and then when breathing stops ramps way up to re-trigger breathing.
posted by spicynuts at 4:00 PM on September 28, 2009
posted by spicynuts at 4:00 PM on September 28, 2009
Response by poster: Ok, just some background for the apnea peeps...and I do appreciate the input, but I'm really hoping someone has some Mayo clinic info:
1. Multiple sleep studies at various centers over 5 to 6 years
2. Have tried CPAP, BiPAP and now VPAP
3 Have tried about 8 to 10 different mask types
4. Vast majority of masks end up in one of the following categories:
a. can't keep a seal
b. hurt like hell (still have a scar on the bridge of my nose from one)
c. lose effectiveness after two weeks
This is why I'm looking for some kind of alternate approach. The other thing is, I have some bizarre symptoms that no sleep doc seems to think are important but that I do and I'd like to maybe also get the kind of rigorous, extensive, time consuming consultation that the Mayo Clinic is known for in order to be 100% positive that CNS Apnea is the full picture here.
posted by spicynuts at 4:07 PM on September 28, 2009
1. Multiple sleep studies at various centers over 5 to 6 years
2. Have tried CPAP, BiPAP and now VPAP
3 Have tried about 8 to 10 different mask types
4. Vast majority of masks end up in one of the following categories:
a. can't keep a seal
b. hurt like hell (still have a scar on the bridge of my nose from one)
c. lose effectiveness after two weeks
This is why I'm looking for some kind of alternate approach. The other thing is, I have some bizarre symptoms that no sleep doc seems to think are important but that I do and I'd like to maybe also get the kind of rigorous, extensive, time consuming consultation that the Mayo Clinic is known for in order to be 100% positive that CNS Apnea is the full picture here.
posted by spicynuts at 4:07 PM on September 28, 2009
This thread is closed to new comments.
If you get no guidance from Mefi, I would try cpaptalk.com. They're extraordinarily helpful and knowledgeable over there.
posted by elsietheeel at 12:38 PM on September 28, 2009