Anyone had to get SURGERY to correct SLEEP PROBLEM?

Discussion in 'Fibromyalgia Main Forum' started by orachel, Nov 7, 2005.

  1. orachel

    orachel New Member

    I recently had sleep study (aka the torture of 1000 electrodes! LOL) and they determined that I'm waking up 40x per hour that I'm sleeping (called alertness factor), and getting nowhere near what I need in REM sleep (controls concentration, congnition, mood...so that explains a LOT of my issues with cognition, I suppose) and virtually no DEEP sleep (which is when body primarily rebuilds damage to itself)...

    I'm also having apnea (stop breathing about 9x per hour, which isn't that bad...but about 25x per hour when I get into rem sleep). So, they want me to go back to the torture of 1000 electrodes for another night and get a breathing aid machiney thingie to sleep with (i'm sure a lot of you have these...so if you do, please tell me what type you have...is the whole face thing better than the "up the nose" thing? And I'm claustrophobic, so will I feel freaked out?)....anyway, I have to go back to the sleep clinic to have a night sleeping on a machine so they can figure out the force it needs to be set to so my (overly developed, apparently!) throat tissues get out of the way and I can sleep without stopping breathing.

    But here's the thing...they're also talking about me having surgery to remove my tonsils, adenoids, uvula (dangle wangle thingie in back of my throat!) and any other "excess" throat tissues that are preventing me from breathing properly. For kids, having tonsils out is not a big deal...my stepson just had his out at age 6 and a half...was totally fine after a day. But the problem is that even BEFORE I got sick, I tend to take at least 3x longer to recover from surgery than most people. Can only imagine that with my current issues (pain levels usually between 7-9, even with ultram/tramadol and darvocet!, major cognition problems, issues with sleep...duh! LOL, and problems walking around now with pain in hips and so forth) it will take me much much longer to recover from surgery.

    Anyone at all have any experience with this? Having throat tissues removed to help with sleep? Chances are I'm going to get the machine, then have surgery, then still need the machine. But what's making me nervous is that noone seems willing to venture a guess as to the "difference" having surgery and sleeping like a cyborg (with the machine on) is going to make in my day to day life. Will my pain drop much? They don't seem to know. Will I be less exhausted (yet unable to sleep)? Noone has any idea.....

    So, I turn to you guys...anyone have any experience with this? Or similar sleep study results? What did you do? Anyone opt NOT to have the surgery? I just keep hearing all of these horror stories about someone having FM and it being somewhat mild until they have a surgery or a car wreck and then just NEVER GETTING BETTER. And my big concern is that my FM is not AT ALL MILD...I so envy those of you who feel like you've got a flu occasionally, and that's the extent of your symptoms. I'm 30 years old, have been sick for about 5 mos now, and have severe pain and fatigue that affects everything in my life...can't work now (which is HUGE for me...work has always been very important for me, plus we need the money! LOL), can't do much with my stepchildren, have to miss out on most social events...Having major issues with cognition and unable to drive much because of it (shouldn't be driving at all, but there doesn't seem to be much of an alternative for me other than to drive to DR appointments....).

    I'm not quite "bedridden" yet.....I do get up and hobble around my house to try to keep my body moving, but cannot DO much....can't do laundry, most house cleaning....just pretty much useless physically at least.

    I cannot fathom what to expect if recovering from a surgery actually makes me worse...

    Any experiences, suggestions, etc? I'm kinda stuck here...not sure what to do. Hope you all have some good advice! I know how important good sleep is to my overall health, but I'm terrified of having a surgery site that causes constant pain (trust me...I've got enough pain! LOL) or never heals, or falling into depression if I don't get better. The tone of this message is kinda depressive, but really I'm just having a rough few days....I've been evaluated by a phd in pain management and a psychiatrist, and both say I'm STRESSED. Not depressed (yet!), or even having an anxiety disorder....I am trying so hard not to fall down that hole, as I've had a major depression, and can't imagine that on top of all this!

    Anyone have issues with recovering from a surgery?

    Thanks for the help, in advance...I really really appreciate all the input!

    Hugs to all,
    Rachel
  2. Fudge43

    Fudge43 New Member

    I don't know if what I'm going to say will be helpful but may be the information might.

    First .. My throat surgery, was going to be removal of my thyroid, by my request because the interior swelling was making me feel like some one was choking me .. it was HORRIBLE .. but .. the kicker was the surgeon ( and he was VERY good ) was the doctor that first recognized I had Fibro .. he sat me down and really told the truth .. that my thyroid was a mess but might be better managed with the proper thyroid medication, I would have to be patient while the right doctors got to the right level of meds.

    He specifically told me .. that with the fibro, I would SUFFER from the surgery trememndously .. he was THAT honest .. and that it might not even make a difference in how I was feeling with the thyroid mass..

    Second .. my husband had 2 surgeries for his snoring .. the later including throat surgery of what you described .. he suffered with it and didn't have fibro .. AND .............. he still snores !

    I guess the point I"m making is that I would think long and hard about the surgery .. perhaps the air machine will work better for you in the restorative sleep issue .. I would really not want to have the surgery if I were you .. but you have to make the choice for what is best for you.

    Good Luck
    Fudge : )
  3. JLH

    JLH New Member

    Hello, Rachel!

    I haven't had any surgery--I had my tonsils and adenoids out as a child.

    I have had about 3 or 4 sleep studys. I have obstructive sleep apena and other sleep problems.

    I sleep with a CPAP machine as well as oxygen. Love it! It definitely helps my sleep!!!

    My obstructive sleep apnea was causing me to go into congestive heart failure!!!

    Have you gotten a second opinion on whether you should have the surgery or not? Sometimes, the outcome is worth the pain of the surgery.

    Sorry I can't really help you about the surgery.

    ...... and I'm glad that you're back on the board!!!!


    Much love,
    Janet
  4. rbecca47

    rbecca47 New Member

    hi rachel,
    i had sleep study done, with out cpap and with cpap, i have the machine that is used in the nose. because of claustrophobia, couldn't stand the one over the mouth. But i have not even had the choice of surgery, saw pulmonary doc today, says the machine will keep me breathing
    and the fibro will also cause sleep depervation, (no kidding) lol. any way, make sure you get all the facts.
    even a second opinion. i really like the pulmonary doc i see. i am so sorry you are going thourgh this, i know with every thing it is hard, so take one moment and take a breath, and just relax, very easy to say, but take some time for you.
    becca
  5. orachel

    orachel New Member

    Fudge, thanks so much for your response! They flat out told me the surgery would stop my snoring. Doesn't surprise me at all that it doesn't work for some.

    I'm just terrified about the surgery making me much much worse...about the only "worse" I could get (not that I'm trying to tempt fate!) is to be bedridden. That would be very hard to bear at 30 years of age.

    Thanks for your help!
    Rachel
  6. tngirl

    tngirl New Member

    I have not had the surgery but went for a consult to a surgeon about it. He did not think I was a very good candidate due to my weight. It was not my understanding that the surgery could make me worse, it just might not be effective and I'd be on cpap anyway.

    Not that you have to be overweight to have sleep apnea, but I am. and if a person gains or loses weight the pressure may have to be adjusted. I lost 70 pounds and the pressure gave me a headache, I had to have it lowered.

    I am very claustrophobic also. If you are too, I would say
    Do NOT get a full face mask. I have found that the less that touches my face the easier it is for me.

    I use a Swift mask with my CPAP. I can't remember who makes it. I will look it up and edit this later. You can look it up online. The swift has nasal pillows (very soft) that fit lightly inside you nostrils. I tried the ADAM nasal pillows and hated it.

    Its important when you pick out your mask to try different ones on. When I switch to a new mask (and I have a few times) they actually let me try it on and hook it up to a cpap set at the correct pressure level.

    Also when they put a mask on you for your next sleep study they will put it on really tight (at least they did where I had my study) you don't actually have to wear it that tight at night.

    I would suggest puting in the words "cpap mask" into a search engine and you will get to at least see what several look like.


  7. elsa

    elsa New Member



    I have some thoughts for you. I don't think your sleep disorder(s) are that unique to fibro - in fact I'd say you are right in line.

    What your doctor refers to as "alertness factor" is very common indeed. You can combine it with your deep wave findings and have it look like this ....

    Alpha Intrusion (that's your 40x per hour you woke)during deep wave stages 3 and 4. Since you don't have deep wave, the alpha intrusion percentage would be high.

    Mine was alpha intrusion 15 - 20% of deep wave sleep. That is not that bad where fibro/CFS sleep disorders are concerned ... I suspect your's is mucho higher.

    Reduced REM .... I hear ya. My results showed zero REM. It's treatable .... by mainly removing any medications or supplements you are taking that suppress REM sleep.

    Honey, there are a ton of them. If you look back to that horrible cognitive episode you had a while back, I would lay the majority of it at the feet of elavil. Provigil probably just aggrevated it.

    Just about every anti-depressant known to man suppresses REM sleep. Any AD's you are taking for fibro pain or sleep are actually making your condition worse.

    Lunesta does not effect REM and does help alpha intrusion ... your alert factor. Xyrem is very good for alpha intrusion also, but not REM... Same with Ambien.

    I get pretty darn good sleep with lunesta 2mgs ... often cut pill in half for 1mg, but a rx can be written for a 1mg tab. It also comes in 3 or 4mgs. My remission started when I cut out the REM suppressors and added lunesta to my protocol.

    I wish I could add something intelligent to your sleep apnea, but I don't have it so no good research on my part. There are many people here who have it so you'll get some good answers.

    As for surgery for snoring ... I wouldn't go there. I know 3 different people who had that same proceedure as recommended to you with absolutely no improvement. The swelling and blood drainage was very difficult to deal with. These folks were "normal" too.

    My hasband's snoring is pretty strong. Had all the upper respirtory tests, ie scoped, etc.. Only recommendation for improvement was your surgery .... but these guys were straight up ... said there was no guarantee his snoring would improve. I would think long and hard about having it.

    FYI .... My husband also takes lunesta 2mgs, sleeps like a baby and he has great reduction in his snoring! Oh Happy Day!! I don't know the "whys" of that ... just is in our house and I'm not about to look a gift horse in the mouth.

    I wouldn't get too anxious about your sleep diagnosis. It actually is fairly common. Alpha Intrusion into Deep Wave with reduced REM. Sleep apnea. It's treatable Hon, ... Just need to start finding the right rx for you. Might take some time as we REM'ers have limited choices.

    I promise though, when you find the right sleep med for you, you won't miss some of those rx'es you had to give up because your symptoms will have improved.

    Take care ... Good luck with your decision on surgery. Saying that it would definately "cure" my snoring would be reason enough to cause me to take pause ... That's a strong statement you know?!

    Thinking of you,

    Elsa

  8. lbok

    lbok New Member

    And it only worked for a couple of years - he has started snoring again. Don't know why - they took out everything. His sleep apnea was very serious - he had hundreds of episodes during the sleep study and would fall asleep while driving and eating because of that.

    However, my husband had severe complications from the surgery, but that was more I think from the surgeon than perhaps the surgery itself. Don't let the doctor gloss over the side effects - this is a serious operation. My husband ended up on a ventilator and in intensive care. My advice would be to completely investigate the surgeon and hospital. Ask the doctor tough questions.

  9. lbok

    lbok New Member

    I forgot to add that he did make a complete recovery (thanks to God). But, it certainly was not the go-home-the next-day simple operation it was supposed to be.
  10. orachel

    orachel New Member

    Thanks so much for the input! Very very thought provoking!

    First, to clear up something I didn't make very clear in my initial post. The surgery would not be to stop me snoring....its to cut out throat tissue that is impeding my breathing...supposedly to help with apnea and alertness factors. However, when the doc told me it would definitely stop me snoring, it raised a big ole red flag.

    And Lbok...I'm so glad your husband recovered! That sounds so serious! Unfortunately, I tend to be the "one in 10000" patient who has everything go wrong with healing...that's why I'm so nervous about this surgery.

    I had a minor surgery in 2000 (exploratory laporoscopic procedure on my abdomen). Docs told me I'd be 100% back to my normal self after 5 days. I was FLAT on my back for 3 weeks in agony...probably took 6 mos for me to fully recover. And that was before I got sick!

    Elsa, I'm so glad you answered this post! LOL I almost paged you earlier to get your opinion, but then I saw somewhere that you'd just gone through the loss of someone close to you. I'm so so sorry for your loss, and most especially for the wife and children. How traumatic. But very interested in your advice. Right now I take wellbutrin 300 and 60mgs of Cymbalta (I think those are the only two that might possibly fall into the category you're talking about, but not sure if either one of them does). Docs said the problem with my REM is primarily that I never sleep longer than 1.5 minutes without waking...I just never have enough sleep time to get there. Every few days my body FORCES rem, which I guess happens when you're deprived of it...and then I wake myself up talking or screaming from such vivid dreams or nightmares...doc said that's pretty normal too.

    At first, I was so excited thinking that this CPAP and possibly even the surgery (which I'm still debating and need at least one more opinion on that!) would make a BIG improvement in my sleep....but I just read in another poll that while making sleep feel better and a bit more refreshing and normal, of like 8 people who responded all said that there was no major improvement in pain or fatigue levels with CPAP. That's a big ole bummer! LOL

    But still holding out hope that it will make a big difference for me. And I'm with you....at least I've carved away yet another little chunk of knowledge about this crazy disorder I've got coursing through my veins! LOL...every little gem of diagnostics is priceless at this point! LOL

    Thanks all so much for your input! I do appreciate it! And all the suggestions for the masks...having something over my whole face I think would make me very claustrophobic, but like another poster said (sorry! don't remember who) I'm also very bothered by anything brushing against my face...aah. I guess I'll have to get used to it!

    Hugs to all,
    Rachel
  11. Fudge43

    Fudge43 New Member

    ... I'm sure it was you Rachel that said she really liked the show "Dead Like Me" .. I think they out right cancelled it .. I didn't hear a thing about it till I was searching on the web .. boy ... was I mad ... they keep other useless shows on TV and take that one off ? .. anyways .. if it wasn't you that had mentioned it .. sorry for venting ..
    But also .. a girlfriend's husband had the throat surgery ... especially for the snoring issue .. guess what .. he still snores .. AND .. he uses that machine now .. AND ... the sleep in different bedrooms too !
    More like us in the real world than any one would expect ! hahaha ..
    Fudge : )
  12. phoebe1

    phoebe1 New Member

    Hi Rachel, I would think very carefully before I had that type of surgery. A lot of people mentioned how people are still snoring after the op and I know that for you it is to remove tissues that impedes breathing, but as far as I know, it's exactly the same with snoring.
    Point is, there is NO guarantee, you would be taking a risk and you have to decide if it is a risk you want to take.

    Why don't you wait and see how it goes with your sleep study with the machine, I'm a redhead and also take extra long to recover form surgery. In feb. this year I had oral surgery, nothing serious I was released the same day and it threw me into a 5 month flare. It was terrible.
    You have so much to handle right now, is it a risk worth taking?

    Good luck with your decision.
    Phoebe