Nice Went Out the Window

Madalot wrote:The leg movements have caught her attention. She said there is a theory that people that have limb movements during REM sleep frequently don't feel as rested as they should. But she said not all doctors agree with that logic. She's willing and agreeable to look into it but she wants to discuss it with my neurologist first.

I assume she's board certified in pulmonology.

Is she board certified in sleep medicine? Doesn't sound to me as if she is.

Maddie, I'm glad to see some "slinkiness" rubbing off on you.

In one of your other recent topics:
Reality of My Situation - Time to Face It

DreamOn made a comment that I think may very well be at the root of your wakeups. More likely (imho) than high pressure would be.

DreamOn wrote:You had talked in another thread about hip/leg pain that makes you feel the need to turn during the night. Is this pain being adequately managed? Is it possible that the pain is occurring more often during the night than you realize, and this may be part of the reason why you awaken so frequently? I know that I woke up much more often (and needed to turn) before getting a good mattress. Now I have a latex mattress with a wool topper, and it really has helped because there are no "pressure points." That may be something to look into. Perhaps it isn't only your breathing disorder that's responsible for the awakenings, and there may be things you can do to optimize comfort. Just a thought to consider at some point.

viewtopic.php?p=591522#p591522

I think I've read that pain during sleep can cause "alpha intrusions" on the PSG EEG data. You'd want a sleep specialist looking at the raw data, however.

Maddie, send the WRITTEN REQUEST via CERTIFIED MAIL, RETURN RECEIPT REQUESTED for those medical record copies I mentioned AND A CD OR DVD of the raw data from the entire night of this recent sleep study. It may save you having another study somewhere else when you can present a copy of the raw data to them.

Congratulations on getting through.

I think Slinky makes a good point, though. Just because your doctor does what you want her to do when you yell loud enough doesn't mean that she really understands your problem well enough to come up with the things you need but don't know to ask for. If you have to lead, or drag, her every step of the way, then she's not likely to provide any new insights. There's no point in burning any bridges, but a second opinion might send you in a new and very useful direction.

With respect to pain possibly waking you up, do you have a thick mattress pad? (I did not even know they existed until I met my wife.)

Thank you, Otter. I certainly didn't mean to burn any bridges.

Slinky wrote:Thank you, Otter. I certainly didn't mean to burn any bridges.

And I wasn't trying to put those words in your mouth. What I was trying to get across was that one can get a second opinion without firing the first doc. In the case of a pulmonologist and a sleep specialist, the two doctors might even work together with no ruffled feathers or bruised toes.

Madalot wrote: I have finally convinced her that I do not sleep on my back. Even though we had talked about it beforehand, HER reason for doing the study was to look for desaturations, even though I told her that I really wasn't desatting much anymore.

rested gal wrote:I assume she's board certified in pulmonology.

Is she board certified in sleep medicine? Doesn't sound to me as if she is.

Not to me either. I think she has her head stuck deep in the pulmo box - and the fact she thought the study was to check fo desaturations is proof of it.

madalot wrote:She doesn't feel that the pressure is a contributing factor to the wakeups, but admits there may be times that it does happen.

This should not have been about how she feels, but about what the PSG showed as reasons for waking. You've just found out your doctor sent you her favorite sleep lab with her run of the mill standard questions. She asked the wrong questions, got the wrong answers -- she is not going to improve.
And I've just realized I'm unintentionally paraphrasing Muffy:

Muffy wrote:
You have to know what it is you're trying to fix before you try to fix it.

Muffy

madalot wrote:The leg movements have caught her attention.

No they didn't. You made her pay attention to them. That's very very different - and proof of where she's stuck her head. Had she been concerned about your sleep, and not focused on your breathing to the obliteration of everything else she would have bought that up, instead of bringing up the tennis balls.

madalot wrote:She said there is a theory that people that have limb movements during REM sleep frequently don't feel as rested as they should. But she said not all doctors agree with that logic.

Have I just heard your doctor pooh poohing sleep medicine?

She's willing and agreeable to look into it but she wants to discuss it with my neurologist first.

Oh? Your pulmo should have said she'd speak to a sleep pro, not only to your neuro.

Meanwhile, while those doctors are discussing your case above your head, and patting each other's back in a mutual admiration society, you really should do as Slinky says: Focus on getting all you raw data from the lab. Start a search for a board certified sleep sleep doctor who will find you case intriguing.

You need a sleep pro in your team - the neuro and pulmo are not enough

But she promised that she would contact him and get back to me.

Not enough - why should the neuro's words come to you through the pulmo?.

It's not about burning bridges. It's about finding and additional specialist. Your team is slogging through the mud - for this part of the way you need a new bridge - an addition, not a replacement.

Otter wrote:one can get a second opinion without firing the first doc. In the case of a pulmonologist and a sleep specialist, the two doctors might even work together with no ruffled feathers or bruised toes.

Right! It might even be a relief to the pulmonologist to hand over the sleep part to another board certified sleep doctor and stick with what she knows best -- the pulmonary issues. The two specialists -- one in pulmonary matters, the other in sleep medicine having familiarity with the machines that might best treat Maddie's unique sleep and respiratory problems -- working together, as you said, Otter. And with the neuro's input also.

ozij wrote:It's not about burning bridges. It's about finding an additional specialist. Your team is slogging through the mud - for this part of the way you need a new bridge - an addition, not a replacement.

BEAUTIFULLY said, ozij!

rested gal wrote:

ozij wrote:It's not about burning bridges. It's about finding an additional specialist. Your team is slogging through the mud - for this part of the way you need a new bridge - an addition, not a replacement.

BEAUTIFULLY said, ozij!

Agreed. But now instead of bridges, I have the image of the neurologist and the pulmonologist stuck in a bog, and the the sleep doc arriving in a monster truck to pull them out.

Once again, my thanks to everyone.

It may not seem like it, but I am hearing what you all are saying and am getting onboard with the realization that my doctor may be a fabulous pulmonologist, but the sleep aspect of it is lacking.

I have a plan right now to get around this, hopefully keeping her as my pulmonary specialist, but inquiring about finding someone else to handle the sleep aspect of it.

I know many of you have been very frustrated with me and I understand it. I have quite a bit to think about and figure out, but I am at the point where the 2 x 4's you all have been hitting me with have finally hit their mark...