Sleep Center/Specialist recommendations?
Question:
try king Edward the VII hospital near midhurst, west Sussex Dr Hopkirk
Response:
I’ve got UAR, and sure can commiserate with your experience. Here’s my experience, in a nutshell. The first sleep study that I had never gave me results… months later, after bugging them, they finally admitted to never analyzing the results (and I suspect that they lost them). Back to insurance, begging for another sleep test, finally got one and only lasted three hours before I went nuts about the wires in my head. Cried big time: "I failed my sleep test." Finally: UAR diagnosis. Sleep doc’s office never returned calls, finally showed up on their doorstep and refused to go away until they talked with me. Dr. Pasqually in Seattle, he was. Not good at describing what was going on, or treatment options, or anything, but mentioned i had recessed. Clinic put me on CPAP, wrong size mask two times, but made me pay for two different headgears myself because they wouldn’t take them back (their fault they fitted me wrong, no?). Can’t breathe through nose, CPAP no good, on to allergy guy… no allergies, on to ENT… deviated septum and enlarged turbinates, no chronic sinus infection thank god. On to facial surgeon, no talking or explanations, one quick x-ray and sorry, centimeters too large no want to talk with you. Back to ENT, into surgery for septo-turbinoplasty, and UPPP at same time what the heck you’re out cold anyway why not do both? Breath through nose like gangbusters, but UPPP leave swallowing/speech problems and no good. On to oral surgeon (after begging insurance one more time): made mouthpiece pulls my jaw forward at night… finally I can a little better. Also diagnosed with possible narcolepsy, but not sure if just tired from UAR or narcolepsy, we’ll see. Doc talked about maxillomandibular surgery, supposed to have high success rate, now reading on internet for info. This took five years. Why so long? I’ve had battle galore with insurance… and not because they said "no" and I had to contest it, but because they wouldn’t return me calls or left me on hold for literally hours at a time. I’ve been suicidal several times, just because I can’t take it any more and want some REST please please please… oh, sigh. Why isn’t there a good doc or clinic out there that will 1) give me a good diagnosis (e.g.: WHERE the obstruction occurs and why), 2) take the time to tell me all my options, 3) tell me about ALL potential side effects expected for each option, 4) talk to me about the efficacy of each treatment type, 4) will explore something other than CPAP (which most docs push because insurance will cover it)… these options include weight reduction techniques, allergy and nasal problems that complicate treatment, surgery, pharmaceuticals, molded sleep pillows, and other options. Where is that doc or clinic? Good question. I can’t help you with it, but I’m sure looking myself. Best of luck to you. Keep in touch. Really. My email is cla…@talltree.net. –Claire Talltree – Hide quoted text — Show quoted text -Sue Spence wrote: > I’ve had it, really. I can’t wait for the NHS anymore. I have had a tentative > diagnosis of UARS (Upper Airway Resistance Syndrome) after a CPAP trial, which > was TERRIBLE, but was not given a CPAP pending an appointment with an ENT to see > if he could do something — the cardiopulmonary consultant ominously mentioned > surgery. This was 4 months ago, and I have had no help whatsoever in the > meantime. I have to wonder, did the consultant just want to save his supply of > CPAPs for someone who looked sicker than I do? It’s not as though anyone has > actually looked up my nose or down my throat to see what’s going on. The only > monitoring done in my sleep study was pulse-ox and video camera/microphone. > After this I was told that I snored a lot (knew that) and might have UARS. > The CPAP trial was, in my opinion, almost worthless. The power cable on the > pulse oximeter made a poor connection and every so often it would start beeping > to say that it was running out of battery power, then die. I would wait a > while, nobody would come, so I’d have to get up, take off the mask, wander > around looking for assistance, someone would eventually diddle with it and get > it going, but when it lost power it reset to a default value (alarm below 90%), > I would finally fall asleep only to be awakened minutes later when my > oxygenation level apparently dropped to that level. Then I’d have to find > someone, get them to alter the default alarm value, and finally get back to > sleep again. Repeat 3x or so. I was barely coherent when I spoke to the > consultant that morning — for the very first time. Then I had to beg for a cup > of coffee before I headed off on my hour-long drive home. I kept slapping myself > to stay awake. > I’m looking for testimonials, if you will, from people who would like to > recommend their experiences with a sleep center or specialist you’ve seen. I > can and will pay out of my pocket to get the treatment I need. I can’t stand > feeling like crap every day. I am sure I don’t need to add any more, most of > the people here know exactly how I feel. I’ve been trying to get treatment for > over a year and I don’t know if I’m ever going to get it at this rate. If there > is a good sleep specialist in the UK who takes private patients I’m open to that > but I’m willing to travel almost anywhere. > Who here has UARS? I’ve read this might explain one of my more painful > symptoms: pain in the area nr my diaphragm. This was one of the first things I > noticed, and was very puzzling to me. I suppose it is from struggling to > breathe. I also understand that it can cause elevated diastolic BP, and I have > noticed this. When I slept normally, my BP was usually pretty low (100/70) now > it seems to stay around 135/98. I can also understand why some US states are > imposing driving restrictions on patients with sleep disorders…
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Response:
I’ve had it, really. I can’t wait for the NHS anymore. I have had a tentative diagnosis of UARS (Upper Airway Resistance Syndrome) after a CPAP trial, which was TERRIBLE, but was not given a CPAP pending an appointment with an ENT to see if he could do something — the cardiopulmonary consultant ominously mentioned surgery. This was 4 months ago, and I have had no help whatsoever in the meantime. I have to wonder, did the consultant just want to save his supply of CPAPs for someone who looked sicker than I do? It’s not as though anyone has actually looked up my nose or down my throat to see what’s going on. The only monitoring done in my sleep study was pulse-ox and video camera/microphone. After this I was told that I snored a lot (knew that) and might have UARS. The CPAP trial was, in my opinion, almost worthless. The power cable on the pulse oximeter made a poor connection and every so often it would start beeping to say that it was running out of battery power, then die. I would wait a while, nobody would come, so I’d have to get up, take off the mask, wander around looking for assistance, someone would eventually diddle with it and get it going, but when it lost power it reset to a default value (alarm below 90%), I would finally fall asleep only to be awakened minutes later when my oxygenation level apparently dropped to that level. Then I’d have to find someone, get them to alter the default alarm value, and finally get back to sleep again. Repeat 3x or so. I was barely coherent when I spoke to the consultant that morning — for the very first time. Then I had to beg for a cup of coffee before I headed off on my hour-long drive home. I kept slapping myself to stay awake. I’m looking for testimonials, if you will, from people who would like to recommend their experiences with a sleep center or specialist you’ve seen. I can and will pay out of my pocket to get the treatment I need. I can’t stand feeling like crap every day. I am sure I don’t need to add any more, most of the people here know exactly how I feel. I’ve been trying to get treatment for over a year and I don’t know if I’m ever going to get it at this rate. If there is a good sleep specialist in the UK who takes private patients I’m open to that but I’m willing to travel almost anywhere. Who here has UARS? I’ve read this might explain one of my more painful symptoms: pain in the area nr my diaphragm. This was one of the first things I noticed, and was very puzzling to me. I suppose it is from struggling to breathe. I also understand that it can cause elevated diastolic BP, and I have noticed this. When I slept normally, my BP was usually pretty low (100/70) now it seems to stay around 135/98. I can also understand why some US states are imposing driving restrictions on patients with sleep disorders…
