I haven't been on much lately as I have been pretty much confined to bed. Except to go to Dr. appts. I has seemed for a while, that my job is going to dr. appts and managing my meds.
Okay, on Feb. 6, I had an overnight sleep study. My pain specialist requested it as I am having some severe pain issues and he didn't want to raise my meds t knew if I have any sleep problems. His office called today and he wants me to come in about my meds, as he had received my report by the sleep study doc. I see him Tues.
Then tonight, my PCP, who actually had to order the study called me to give me the results. He told me that I have severe sleep apnea. Apparently, normal oxygn saturation level is 94-96%.During my sleep study, I spent 2 hours below 90%! I said, "Great...does this mean that I could croak in my sleep?" The doctor said that was "highly unlikely".
He said that when I go into REM sleep, I become paralyzed, my throat becomes paralyzed and I don't get any air til I wake myself. People with this problem are typically extremely sleepy the next day. I been telling them I was tired all the time for a long time!
I saw the ortho surgeon who did my Sweeties knee replacements,yesterday. I have been having such severe pain in my groin and l. side of pelvis, that it has kept me in bed or my scooter for almost 3 weeks! Every doc I saw or talked to said that groin pain is typical of hip arthritis. The ortho took his own x-rays and said I have very little arithritis in my hips. But he looked at the l spine x-rays that were taken last week and said my back is horrible and there are many possibilities in my back that could be causing the pain. Most docs are shocked when they see my spine x-rays. My scoliosis is severe, I have 2 rods and 5 screws in L4-S1 and all levels above L4 have little or no disk remaining (in the lumbar region). Also I have spondylylosthesis above that. One vertebrea looks like it is falling out of the stack. It is very far over to the right, then the next is pretty much back in line. Problems go all the way up to top of c-spine.
As of 2 weeks ago, I cannot bear weight on my left leg and a new symptom, as of yesterday, is that I cannot raise my l. leg from the lying or standing position. I cannot even go to the bathroom without my scooter.
I'm getting pretty scared about this. I could handle it as long as I could use my walker around the house and take a few steps without any help. But now, I feel so helpless and useless!
Sorry for the long, whiney post. I don't do this often, but when I do I do it up right!!
I just needed to blow off a little steam. I am having an MRI on my pelvis and l. hip as soon as authorization comes thru.Should be authorized tomorrow or Monday. Hopefully the MRI will give us some answers. The ortho wants to rule out compression fractures in my pelvis and avascular necrosis.
I'll let you know if we find out anything.
To anyone who actually finished this...thanks, and I'll try to post soon.
Love to all, Nini
Okay, you made ME sleepy with that post!! LoL
*hugs* Bless you heart hun, you sure have a full plate dontcha?? Try to rest as much as possible, don't worry about posting more than you can, we understand.
What are their plans for the apnea? Did they say??? And what's your next step for these new symptoms? They don't know exactly where in your back is causing it yet, do they? What a bummer :(
Hang in there hun *hugs*
HI Nini, firstly sorry to hear you are having such a hard time. I wanted to give you some advice on the sleep apnea masks, I too have severe sleep apnea, they told me on the study, that I was stopping breathing 127 times a night. I purchased the Resmed nasal mask, it is much more comfortable and as I am claustrophobic, this was OK. My oxygen levels have been set pretty high and I have been using it now for nearly 2 years. I certainly get a better nights sleep with it than without it. I just feel with that on and my splints, my hubby must think he is going to bed next to darth vader!!!!! Best of luck, Janie.
Boy Nini, your back situation sounds so painful. I also have sleep apnea and have CPAP at night. I am bad about wearing it but am going to tonight. It is one of the top reasons for sudden cardiac death so wearing it is so important. I also have REM apnea. It takes some getting used to. Like janie said, get a mask that is comfortable. That is key to being compliant. My mask is one reason I'm not as compliant. I know i need to shop for a new one. Good luck and keep us posted.
Nini- I am sorry. I hope you get some answers real soon.
Please keep us posted.
Thanks so much for answering my rambling post:)
Janie and Lori, thanks for telling me about your experiences with the CPAP. I was supposed to have a "split-night" study, with the CPCP for the second half of the night. But the tech tried it on me on the lowest air and I couldn't stand it. I felt like I was suffocating. I asked her to let me try again, as I wanted to get the most accurate test possible, and I just couldn't stand the air blowing in my nose. It felt like the air was being sucked out of me! Not sure what we're going to do yet, as apparently that is the treatment for apnea.
Thanks Katie and Joonie, too. Katie we won't know exactly what's going on in my back til the MRI. The ortho says the hardware in my body is okay for the MRI. I sure hope so!
Thanks again! I'll let you know when I find out anything.
Much love, Nini
Woah! Really? An MRI with all that metal??? How on earth do they accomplish THAT?
Good luck to you! *hugs* Let us know what they say about that.
As far as the CPAP machine............is there a way for it to be set to blow *very* low until you fall asleep? Or do you think it'd wake you up anyway? Or just be off until you fall asleep? Just brain storming!
(((((((((((((((((((((((nini))))))))))))))))))))) soo sooo sorry you're going thru soo much and in such pain!!! Prayers and its ok to whine, we all need to.
I"m pretty sure, I have sleep apenea too, but haven't felt like going to a sleeping lab..
i was babysitting a 10 yr old and told her i had to take a nap for like 20 mins,
she said she had such fun , watching me sleep w/ my cat.. LOL
bc.. she said i would start snoring.. wake my cat up, who was startled, then go back to deep sleeping.. she said i got sleep, but my cat sure didn't.. lol
Plus, i've even woken myself up, w/ my snoring!! lol
i hope feel better soon.. prayers...
oh ps: I wanted to ask, do you have a really good mattress?? That can make such
an ENOURMous difference, i swear!!
I was able w/ medicaid/cal to get a hospital bed, and bliss sigh, its great, i was sleeping on old boxsprings on the floor before that.. and this i can position the head and foot board.
My back and how i feel is wow, just that wonderfully different!!!
Whispered2008-02-22 01:33:59Nini, something I forgot to mention, to help you get used to it, you can set in on a what they call a ramp. I set mine for ten minutes then when I am feeling really sleepy, I put it on and you hardly even know its on and by the time the ten mins is up the oxygen is where you need it, and you are hopefully fast asleep. Also my GP seems to think it has helped to put my blood pressure up as I wasn't very strict with it for about a week and now I am being very obedient! Good luck, if you need any more info please remember I am here. HUgs Janie.
Nini - you are correct, you do have the right to whine in here, just like all of us. I am glad you shared. I have had a feeling from all your wonderful, compassionate posts that you probably had it alot worse, and I want you to know how much I admire you and the posters in here with the worst of it and how supportive they are. We all love your kindness and goodness, and durn it, whine away once in awhile ~~ Cathy PS My best friend from second grade was in a small plane crash in Alaska when we were 22 and her boyfriend pilot was killed and she was a C7 quad for almost 27 years, until she finally died a couple of years ago. She rarely complained, and I was ashamed to be around her she was so good to everyone who talked about their problems (including me) like breaking a fingernail or something small. I find it ironic that I am now sick and facing disability like she did. I know she is waiting for me. Cmorning Nini,
sorry to hear about all your troubles. You have been given some excellent advice. The only thing I might add is that if you are having trouble with the nasal masks, ask for a full face mask. Hubby has severe sleep apnea and also could not stand the nasal mask, he felt like he could not breath at all so they gave him a full face mask to try. He said it made all the difference in the world. Just a suggestion, also like Janie, ramp settings really do help. good luck!
I am sorry to hear of your problems. I do hope the MRI sheds some light on something.
Hugs and well wishes going out to you.
My neruo wants me to do the sleep study but I continue to refuse. My snoring has gotten worse recently though. I might be able to avoid it too much longer.
Nini~You'll be in my thoughts and prayers as you continue to face these difficulties. Hang in there Sweetie.
I'm so sorry to hear of all your troubles, hopefully your drs will be able to figure it all out and the fix isn't very difficult, it sounds like you've already had some major surgery.
My DH wears a c-pap, they thought he might be narcoleptic, he nodded off so fast and I just thought it was the sound of my voice. The machine and the masks can be adjusted so just keep trying. It has been a god send for me, I had to wear ear plugs at night, but then the whole body jerking to draw in air would wake me up. He fell asleep at the wheel one day when I was in the car, of course, I was talking. I told him he'd never drive the kids again.
You are in my thoughts for some speedy relief.
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