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Re: I May be Cured, Find Out How (True Story)
Posted: Wed Sep 28, 2011 3:18 pm
by JohnBFisher
weeburty wrote:... Once I have done the test and as expected do get the all clear, on Friday, that will be hopefully my last visit. ...
Truly exciting! Here's hoping you continue to do well. Though as you admit it's a rare bird indeed that the surgery helps, it clearly shows how important it is to do the homework on options. Just because surgery does not always fix the problem does not mean we should not explore options that will help improve our airways. As in your case, if removal of tonsils will even just help, it would help reduce the required pressure and make use of xPAP therapy more acceptable.
So, here's hoping the news will be good!
Re: I May be Cured, Find Out How (True Story)
Posted: Wed Sep 28, 2011 3:34 pm
by Axxel
weeburty wrote:Update...Today I attended the Sleep Clinic and guess what, the Dr took my CPAP from me..YIPPEEEEE.
I am to go back tomorrow and pick up a home test kit, wear it tomorrow night and take it back Friday.
He shook my hand and wished me well and like the surgeon he told me my case was rare indeed and was
delighted that it had worked out this way. Once I have done the test and as expected do get the all clear,
on Friday, that will be hopefully my last visit.
Graham
PS will let you know on Friday what the outcome is
Congrats! Must feel awesome! Crazy no Drs looked at the tonsils up until recently.
Just curious, with tonsils that big, what pressure were you on cpap?
Re: I May be Cured, Find Out How (True Story)
Posted: Thu Sep 29, 2011 12:52 am
by ozze_dollar
Well what to say. good luck to you.
Re: I May be Cured, Find Out How (True Story)
Posted: Thu Sep 29, 2011 12:57 am
by ozze_dollar
Lets keep in mind that someone has made an incorrect diagnosis here that has caused you a lot of grief.
Re: I May be Cured, Find Out How (True Story)
Posted: Thu Sep 29, 2011 1:35 am
by weeburty
No incorrect diagnosis, I did have OSA else I wouldn't have been issued with a CPAP
or the controlled drug to stop me feeling sleepy while driving. What has been missed
is the possibility of the enlarged tonsils being the cause, however with only 1% of OSA
sufferers being cured by a tonsilectomy it is no surprise really. It took an ENT surgeon
to spot it while I was seeing him about a hearing problem.
Re CPAP pressure, I believe it was set at 19
Re: I May be Cured, Find Out How (True Story)
Posted: Thu Sep 29, 2011 3:01 am
by sickwithapnea17
that's great that you might be cured! so if you have the surgery can you start working right away? are there any side effects to losing the adenoids and tonsils?
it's been so difficult one ENT tells me yes, the other no.
maybe you should keep on using CPAP until you have a sleep study....
Re: I May be Cured, Find Out How (True Story)
Posted: Thu Sep 29, 2011 3:49 am
by robertjvan
If was me would hold on to the machine as things may grow back, my brother had surgery but it only help for a while.
Re: I May be Cured, Find Out How (True Story)
Posted: Thu Sep 29, 2011 8:52 am
by weeburty
No choice, they took it back. However if OSA returns I'll get it back without much problem they say.
Though the test results will be known in a few days, apparently the letters they send out to GP and
me are taking 4-6 weeks.
Re: I May be Cured, Find Out How (True Story)
Posted: Thu Sep 29, 2011 10:11 am
by Guest
Very Cool!!
Re: I May be Cured, Find Out How (True Story)
Posted: Thu Sep 29, 2011 11:47 am
by weeburty
sickwithapnea17 wrote:that's great that you might be cured! so if you have the surgery can you start working right away? are there any side effects to losing the adenoids and tonsils?
it's been so difficult one ENT tells me yes, the other no.
maybe you should keep on using CPAP until you have a sleep study....
I was never told that there would be any side effects after wound was healed.
While it was a very painful recovery lasting 15 days, it was almost normal after
21 days and been brand new since.
Re: I May be Cured, Find Out How (True Story)
Posted: Thu Sep 29, 2011 5:49 pm
by Dark Matter
How exciting for you and I'm hoping that your recovery continues. Please keep us updated!
Re: I May be Cured, Find Out How (True Story)
Posted: Thu Sep 29, 2011 6:44 pm
by Purrceyz
Wonderful for you.
I agree the throat should be checked (my sleep doctor does this every visit. However, I had my tonsils & adenoids out twice as a child (age 3 & 6 - they grew back) and I suspect I had sleep apnea for many years after.
Re: I May be Cured, Find Out How (True Story)
Posted: Fri Sep 30, 2011 1:02 am
by weeburty
Purrceyz wrote:Wonderful for you.
I agree the throat should be checked (my sleep doctor does this every visit. However, I had my tonsils & adenoids out twice as a child (age 3 & 6 - they grew back) and I suspect I had sleep apnea for many years after.
As I've said before in my case it was sheer luck. The sleep doctor explained that my tonsils were the vibrating tissue thats needed to cause snoring and thus increase the chance of sleep apnea which is what happened. If the vibrating tissue had been elsewhere in that area, I'd still have OSA. He also said being overweight is a major factor in having OSA and he made it clear that it could come back if I don't get and keep my weight under control. I have a collar size of 17 (UK), and 50 pounds (app. 22kg) overweight. Through surgery I have removed one obstacle, now I have work to do on the other.
Re: I May be Cured, Find Out How (True Story)
Posted: Fri Sep 30, 2011 2:35 am
by sickwithapnea17
why exactly do you need tonsils and adenoids?
after surgery do you lose your sense of taste and are nauseous and unable to work for 14 days?
it seems that the surgery would at least partially cure your obstructive sleep apnea for many people, is the 1% cure rate only for complete cure?
Re: I May be Cured, Find Out How (True Story)
Posted: Fri Sep 30, 2011 9:29 am
by Purrceyz
sickwithapnea17 wrote:why exactly do you need tonsils and adenoids?
Tonsils and adenoids are part of your lympathic system - they are supposed to prevent infection but in rare cases, can become infected themslves. People of my generation (born in the 1950s) routinely had their tonsils out as young children and sometimes adenoids as well.
I personally think the those who still have tonsils should be checked to see if they are interfering with breathing while sleeping in case they are a cause or contributor to OSA (as it was in the original posters' case) although often there are other causes. (In my own case, I suspect it's a too small throat and underdeveloped jaw (which my dentist has complained about since I was a kid. In 1959 when I was 3 years old, my mom was told removing my tonsils & adenoids would cure my noisy breathing and snoring while sleeping. It did not. After, they told her, nothing could be done.)