Surgery and Cpap – sharing my experience

[Kickthefog]

Hi everyone!
If you’ve read my other posts, you know I went in for thyroid surgery to have my entire thyroid removed last month. I had some interesting experiences and wanted to share with you all so perhaps I can help anyone else with SA, going under general anesthesia. There are other posts on this topic but I’ve read them all (I think) and none of them mentioned some things I experienced and learned. So a one and a two and a three…

Going into the surgery:
A bit nervous, of course, I told anyone who would listen that I had sleep apnea, both in pre-surgery checks 2 weeks before, the day before, the day of. I told the Nurse who checked me in for surgery, I told the pre-op area nurse, I told the Nurse Anesthetist, the Anesthesiologist himself, Then the 2nd and 3rd Anesthesiologist I had assigned to me because they kept changing Anesthesiologists due to Emergencies that occurred for other people or something, and they kept stealing mine away from me, so I told all 3. I reminded the Surgeon right before the surgery as well, even though he had heard me say it a dozen times before over the previous month. Bottom line: EVERYONE HANDLING ME KNEW I NEEDED CPAP. HOWEVER, each and every person I told just said: “we understand, you will be fine, don’t worry about it at all, we do this all the time.” It was only one person, the Nurse Anesthetist, who actually told me HOW they were going to do it (with me), that put my mind at ease so I could finally stop telling people and stop worrying about it. (I’ve read too many horror stories). She said, with sleep apnea patients especially, we give the drugs to paralyze you and put you to sleep AT THE SAME TIME. Normally, they put you to sleep first, and THEN give the drug to paralyze your muscles so you, the patient, aren’t aware of this. By giving them at the same time, you go to sleep with your airway paralyzed in the open position so there is no concern at all about putting the tube into your airway. It was a little strange being paralyzed before going to sleep but it wasn’t painful or scary or anything. In fact, the only reason I even knew (other than them telling me) was when I tried to move my head because the nurse put the oxygen mask on my mouth a bit sideways and so I tried to move my head to get it square over my mouth and I couldn’t move at all. It sounds scary to not be able to move but it wasn’t too bad. As I said, I felt no different at all and had I not tried to move, I never would have known. Even still, that feeling is a whopping 3 or 4 seconds long before you are asleep so it really was “the only way to go” as far as I was concerned. So in summary, ask them if they plan to paralyze you before or while you go to sleep so your airway stays open and you will be home free going INTO the surgery.

Waking up:
They told me beforehand they would only remove the breathing tube when I was ‘clearly fighting it”, meaning I was breathing on my own enough to be completely irritated that the tube was “in my way”. Again, they emphasized NOT to worry at all and that I would be fine. They didn’t allow my CPAP into the recovery room because each and every person that I told (see above) said I would NOT need it and there was “no reason what-so-ever’ to have it. And they assured me I would be “completely safe” Well, as I found out, completely safe and comfortable are two different things. Yes I was safe, yes I survived it and yes my oxygen levels stayed up above 90 for the most part (as I’m told). I didn’t wake up with a headache and other than the obvious crappy, expected feeling, I felt fine. But GROGGY as all heck of course. So I am lying on my back and I desperately just wanted to go back to sleep and but I could feel myself doing the apnea thing because I would be awakened in the same fashion as when I lay on my back at home going to sleep at night with a low starting pressure. So I said to my nurse that was watching me, can I please have my cpap? She said, you think you need it? I said yes. She said, your oxygen levels are fine and you are “‘awake”. I said, but I want to go back to sleep. She said: go ahead, I’m watching you and I’m not going anywhere. Keep in mind, I can barely talk and I’m literally half asleep so this conversation alone took everything I had, so I wasn’t in a position to argue so I rolled on my side and muttered is this ok. She said “on your side is ok with me”. And so I went to sleep for I’m not sure how long. When I woke up later and was a little more “with it”. I said, how has my o2 level been? She replied “fine” everything looks great. So I got through recovery without my cpap knowing that a nurse was there to save me if anything went wrong, but not feeling nearly as comfortable as I could have felt if I had my cpap machine with me. When I was politely denied earlier that day on using cpap in recovery, they stated that a: “I simply wouldn’t need it, and that I would be completely safe” and B: “we will worry about it getting lost or misplaced as you are moved from room to room and they didn’t want to be held accountable for it.”

Now, with all that said, I think the care I received was outstanding. The level of professionalism was again, outstanding. They initially treated me as if I wouldn’t understand what they were doing or telling me, or perhaps they didn’t want to scare me so except for one person who explained EXACTLY, they simply decided to say, “don’t worry it will be fine”. But to an educated group such as us folks here, who take pride in understanding our ailments, the FACTS are what we want, not to simply be told, it will be fine. I was a different patient entirely after the paralyzing thing was explained in detail and she knew that I was completely at ease after that which made everyone’s job easier and me less paranoid about the procedure.

And yes, I was fine in recovery and was kept safe, which is their primary goal, but only sleep apnea patients understand the comfort that goes along with having the ole blower going as you close your eyes. Even if I went for surgery again tomorrow, I don’t know how I could convince them to allow the cpap into the recovery room. I honestly don’t see it happening. My wife had it with her at all times and was ready to deliver it when ready, but they never called her because I didn’t “NEED” it. Safety and Comfort are certainly 2 different things to them and with the volumes and issues they see every day, I can’t say that I blame them. But knowing beforehand, I mean weeks before, not learning the day of that I couldn’t use it in recovery didn’t do much for my nerves either. So just simply knowing this ahead of time would have made a big difference to me.

On a lighter note, I did have, at that time, my brand new Resmed S9 auto with me… and so I claim to be the first person to use the s9 in the hospital environment! I’ll be expecting my special commemorative plaque from Resmed any day now! hehe!

Oh and interesting enough, I’m wondering how my huge thyroid and its tumors effected my airway because my numbers have been MUCH better since the surgery. My numbers on the S9 were much better anyway as compared to my S8, but they dropped HUGE starting night one after my thyroid was removed. So funny how it may have actually improved me. Doctor told me to use the pulse ox and try sleeping without the cpap to see just how much I am improved since having it removed. Ideally I need another sleep study to be sure but for now, I am happy with lower numbers and feeling pretty darn good. We shall see.

I hope my information helps those that may go for surgery also. Feel free to contact me with any questions if you too may be heading down the surgical road. It was interesting to say the very least and I am very glad that chapter of my life has been read and is done and over. Well I have radiation treatment ahead, but that is small potatoes in comparison so no worries there.

May thanks again to all of you who wished me well, and supported me!

God bless you all, my CPAP family.

Pat

[Pad A Cheek]

So happy to see that you are recovering well from your surgery. Thank you for letting us know the thing about how they deal with sleep apnea patients. You are so right that the facts are what I would want too. I need to know that I am going to be taken care of and educating me makes both of our jobs easier. In recovery, I too would rather have my CPAP machine on than to rely on a nurse watching me and making sure I do not stop breathing especially when I have drugs in me that make me groggy. Give me my security blanket and I will sleep soundly and wake up happy.

Thank you for sharing.

Take care
Karen

[Mary Z]

Thanks, Pat, for that bit of education about the anesthesia. I just had DBS Surgery for Essential Tremor. It's two part and for the first part I was totally awake, but couldn't use my CPAP afterwards due to the insicions on my head. For the second part they will put me to sleep, but I'll know what to talk about with anesthesia. I feel a bit uncomfortable knowing I won't be able to use my CPAP for about two weeks after the surgery (again, sore head). but at least am assured I can survive anesthesia!
Thanks for your story, and good luck with recovery and the OSA numbers.

[Catnapper]

I had breast cancer surgery about a year ago and had a very similar experience in the recovery room. The minute I woke up I asked for the machine and mask, but the nurse sitting beside me said she would take care of me and I would not need it. Being a strong-willed (and some might say stubborn) woman, I forced myself to stay awake from that point on while I was in the recovery room. I wanted to go back to sleep because I was in a lot of pain, but I managed to stay awake. The nurse was right - she did stay beside me the entire time. I was ready to yell for her if she stepped one inch away from me. I was soon on my way to the sitting up version of recovery and then home because I was wide awake. I suppose I was afraid to go to sleep without my mask and machine and that helped to keep me going.

Some years ago when having surgery, I was given the paralyzing drug first, and then they forgot to give me the drug that puts you to sleep. That was not fun. Apparently I started having convulsions (tricky when you are paralyzed) and they realized my blood pressure was sky-rocketing and figured out I needed to go to sleep. I think I passed out before they got it worked out. Not my favorite memory. I like to breathe.

Catnapper - Joanie

[sleepycarol]

Yep when I had a D and C in 1999 I was given the drug that paralysis you first. I couldn't breathe, not a comfortable feeling at all and never ever want to experience the horror I felt during the time it took for them to finally put me out. I still remember laying there not being able to breathe and no way to tell them or to move --- very, very scary. When I had surgery again a few months later I specifically told them that I did not want to go that route again. I still feel the same way today (although since the previous surgeries I have been diagnosed with sleep apnea).

I am glad things went for you and you are on the road to recovery. I hope you continue to improve and keep us posted about your numbers.

[Ms.Snuffleupagus]

Hi Pat,
Thanks for sharing your story. I am glad everything went well! Great that your numbers have gone down post surgery. Wishing you a continued speedy recovery.

[Kickthefog]

Thanks very much everyone. appreciate it. Yeah, i'm just hoping the info helps someone along down the line.

And WOW... i never thought of the idea that they would lollygag and parylyze ya and then put ya to sleep "whenever". That is scary as heck just thinking about it! I just assumed that they would do what they did for me and it would be "just" before i went to sleep which they did, so i feel very fortunate. Wow... i'm sorry a few of you had to endure that "hell".

Gosh, there are just so many scary stories! Right when ya think they know what they are doing, ya hear more horrors. But thats good. At least we are educating ourselves so this kinda crap can hopefully be avoided for ourselves and others.

Pat

[rubymom]

Wow I get scared just thinking about not be able to breathe or move or tell somebody that you're panicking.

I'm glad things went well and you're on the road to recovery. Thanks for sharing your experience.

One thought that occurred to me is that I believe there's a strong possibility of vomiting in the Recovery Room. Been a good 10 years or so since I've been to one so maybe the drugs are better now. But I wonder if they worry about a patient being nauseous while the mask is on their face?

[kteague]

Thanks for sharing your experience with us, and it's good to hear things went well. About getting retested - I don't know what your lower pressure is, but after you recover from the surgery and the swelling has had time to go down, you could drop that lower number a bit at a time and see if you still register events or if the pressure rises. By no means another sleep study, but if you started seeing no pressure increases and no AHI, follow up may be merited. Wouldn't it be great if it did turn out your OSA was caused by the enlarged thyroid! Do keep us informed if things change for you.

[gpk111]

Kick,
Thanks for your posts. This Board continues to amaze me. Such depth and shared compassion!

[LinkC]

Glad everything went well (semi-well?), Pat.

I go under the knife next week...but at the other end. Ruptured Achilles tendon. I, too, am concerned about the anesthesia. My boss (not a hosehead) recommended I ask for Propafol anesthetic (It's what Michael Jackson was hooked on...now THERE's an endorsement, huh?)

I was somewhat relieved to find OSA listed on my pre-surgical questionnaire. I checked, underlined and circled it. Fortunately, I don't have any of the other issues they listed, so it really stands out. And since I'll be lying face down while they cut on my heel, I don't anticipate problems in surgery. I will request staying facedown (or side) in recovery...and also offer to bring my CPAP gear. (I'm not really expecting them to allow that...especially after reading your experience.

Moving my massive body around on crutches for the next 3 weeks will be the REAL challenge I face. I already got them and am practicing at home. It ain't pretty! And downright scary! (I just ordered a "knee walker", which looks like a backward tricycle with a flat padded seat. You rest your knee and calf on the "seat" and ride it like a scooter. They claim it's WAY easier than crutches. We'll see... (Anyone here have experience with one??)

And thanks again for the insight on surgery and OSA!

[DreamStalker]

Thanks for sharing your story Pat.

I had my first visit ever with an endo specialist yesterday and she told me she suspected I may have an enlarged thyroid ... more tests to come next week.

My question is ... how will you manage without your thyroid, I thought everyone needed a thyroid?

[BlackSpinner]

One thought that occurred to me is that I believe there's a strong possibility of vomiting in the Recovery Room. Been a good 10 years or so since I've been to one so maybe the drugs are better now. But I wonder if they worry about a patient being nauseous while the mask is on their face?

I did after my hysterectomy (this was over 15 years ago) - turned out I was reacting to the morphine and the anesthesia. I knew about the anesthesia from a previous experience but the morphine added a whole new dimension. Fun was had by all.

[Slinky]

DreamStalker, since they've found nodules on my right thyroid lobe I've been reading up about this. Plus my mom had a benign meningioma on her parathyroide, surgery, radiation, etc. which also killed her thyroid.

You take thyroid medication for the rest of your life. Sometimes it can be a bit tricky finding THE right dosage, etc. Others take to it like a duck to water w/the first dosge tried.

The sad part is that FDA has seen fit to take "dessicated" thyroid off the market. I think that's the correct term for natural thyroid vs the synthetic thyroid meds like Synthroid, etc. Many, many people who have had their thyroid removed had much better luck w/the natural thyroid vs a lot of adjustment problems w/the synthetics.

And, KickTheFog, God bless you for sharing your experience!! I've got several "possible" surgeries hanging over my head and I have COPD in addition to OSA. So far I've managed to avoid them by "staying on the straight and narrow" but something new has cropped up wherein I may have to give in and agree to a "two-fer". Waiting to hear now from the Mayo pathologists. Well, actually from one of the Mayo specialists regarding what the pathologists had to say about the biopsy specimens. And, of course, the thyroid nodules that "biopsied" benign so that we can just wait and watch. The waitng and watching bit is a bit of a drag but sure beats surgery before you really need it! We've been waiting and watching the "two-fers" since 1999 and 2003. "They" say that God looks after fools. He sure has been taking good care of me!!!!

[Froro]

Glad you are recovering well.

I too shared your experience in recovery when requesting my cpap after surgery. It was right there beside me all set up but declined, which resulted in me not sleeping and elevated anxiety.

Instead the nurse poked me every few minutes with "you need to breathe"....ya think?

I wrote a long letter to the admin of the hosp. CC'd my family doc, sleep doc, and obgyn (who was the surgeon). I haven't heard directly from the admin as of yet but my family doc let me know that the situation is being discussed and they are looking at educating recovery room staff about the need for our units etc etc. I'll keep posted as I get word.