Considering Surgery. Boston area recommendations requested.

[Bobby_Newmark]

Boston area recommendations for surgeons, and doctors who determine suitability for procedures (ENTs? not sure). History of affiliation with or Fellowship at Stanford Sleep Clinic/Sleep Surgery would be nice but not required.

Thanks in advance.

[Julie]

What procedures are you considering - I ask because I suggest you first read the very recent thread here "To Cpap or not to Cpap" (do a forum 'search' if you can't find it) before making final decisions. I'm sorry, can't help with referrals tho'.

[Bobby_Newmark]

What procedures are you considering - I ask because I suggest you first read the very recent thread here "To Cpap or not to Cpap" (do a forum 'search' if you can't find it) before making final decisions. I'm sorry, can't help with referrals tho'.

I am mainly in the market for surgery because of the Guilleminault "95%" paper, which implies nasal reconstruction & UPPP as phase I and MMA as phase II if I doesn't work. They claim 60% "cure" rate for phase I, 95% for phase II. I have not made my final decision, the potential complications (coughing/swallowing food into your nasal cavity, permanently numb lower lip) scare me.

CPAP does not work well for me because of the high pressure required and air swallowing which wakes me up.

[Julie]

How's this - to a surgeon's hammer, every 'ailment' is a nail.

Aerophagia (air swallowing) can be alleviated in many people, often simply by lowering pressure settings by even one cm, but you may want to ask your MD about doing it if you're not comfortable trying on your own, and don't normally follow your progress (AHI, etc.) with software.

[Bobby_Newmark]

How's this - to a surgeon's hammer, every 'ailment' is a nail.

Aerophagia (air swallowing) can be alleviated in many people, often simply by lowering pressure settings by even one cm, but you may want to ask your MD about doing it if you're not comfortable trying on your own, and don't normally follow your progress (AHI, etc.) with software.

I don't think broad judgements about surgeons in general are useful.

CPAP does not work for everyone, and that doesn't mean they didn't try it. I get aerophagia at my current pressure, 14 cm, which is what they gave me locally. This gives me minimal benefits at best. At Stanford they agreed with me that my local titration was not adequate, gave me BiPAP at 24/19, and specifically told me, "when we put the pressure high enough to suppress the apneas, you start having aerophagia".

[49er]

What procedures are you considering - I ask because I suggest you first read the very recent thread here "To Cpap or not to Cpap" (do a forum 'search' if you can't find it) before making final decisions. I'm sorry, can't help with referrals tho'.

I am mainly in the market for surgery because of the Guilleminault "95%" paper, which implies nasal reconstruction & UPPP as phase I and MMA as phase II if I doesn't work. They claim 60% "cure" rate for phase I, 95% for phase II. I have not made my final decision, the potential complications (coughing/swallowing food into your nasal cavity, permanently numb lower lip) scare me.

CPAP does not work well for me because of the high pressure required and air swallowing which wakes me up.

Bobby_Newmark,

As one who is going to have a septoplasty/turbinate reduction to improve my pap therapy tolerance, I am very sympathetic to your issues. But I would stil be very careful regarding the surgery I chose because as I mentioned in previous thread, the success rates in keeping people off of cpap permanently are not great.

Have you simply looked into having the type of surgery I am having as a start in the hope that it could reduce your pressure and make pap therapy more tolerable?

If you still believe drastic surgery is your only option, I am curious as to why phase I would be recommend first when it has a lower success rate vs. an MMA? And personally, if I was going to do an MMA, Dr. Kasey Li is the only surgeon I would even consider going to even though I would have to travel far.

And since you are in Boston, what about consulting with Dr. Steven Park, who is in New York City?

http://doctorstevenpark.com/

Regarding doctors seeing things from their own training, surgeons aren't the only ones who do that. Most of the sleep doctors I saw didn't think my nasal obstruction issues had anything to do with my pap therapy difficulties. Only time will tell who is right or not obviously.

Best of luck.

49er

[Julie]

"I don't think broad judgements about surgeons in general are useful."

You may not think so, but as one who worked nowhere else my whole life but teaching hospitals, I am coming from a place of experience and 'education'.

[Bobby_Newmark]

Bobby_Newmark,

As one who is going to have a septoplasty/turbinate reduction to improve my pap therapy tolerance, I am very sympathetic to your issues. But I would stil be very careful regarding the surgery I chose because as I mentioned in previous thread, the success rates in keeping people off of cpap permanently are not great.

Have you simply looked into having the type of surgery I am having as a start in the hope that it could reduce your pressure and make pap therapy more tolerable?

If a combination of surgery and CPAP could get my symptoms into remission I would be thrilled. Right now I have nothing.

If you still believe drastic surgery is your only option, I am curious as to why phase I would be recommend first when it has a lower success rate vs. an MMA? And personally, if I was going to do an MMA, Dr. Kasey Li is the only surgeon I would even consider going to even though I would have to travel far.

It was my understanding that UPPP and nasal reconstruction is necessary for the high success rate, and that the MMA alone does not help with soft palate and nasal issues. I could be wrong, obviously, and will discuss options with a doctor if I end up seeing one.

And since you are in Boston, what about consulting with Dr. Steven Park, who is in New York City?

http://doctorstevenpark.com/

Thanks for the link.

[49er]

Hi Bobby_Newmark,

I have a very hard time believing that any type of UPPP surgery can contribute to a high success rate since the success stories regarding eliminating apnea seem to be quite minimal with this procedure.

I am curious, have you had nasal potency issues for awhile as many people with sleep apnea will have? If that is the case, I would stand by what I said previously about looking into appropriate nasal surgery and nothing else to see if that helps with your pap therapy tolerance and hopefully, the lowering of the pressure.

49er

Bobby_Newmark,

As one who is going to have a septoplasty/turbinate reduction to improve my pap therapy tolerance, I am very sympathetic to your issues. But I would stil be very careful regarding the surgery I chose because as I mentioned in previous thread, the success rates in keeping people off of cpap permanently are not great.

Have you simply looked into having the type of surgery I am having as a start in the hope that it could reduce your pressure and make pap therapy more tolerable?

If a combination of surgery and CPAP could get my symptoms into remission I would be thrilled. Right now I have nothing.

If you still believe drastic surgery is your only option, I am curious as to why phase I would be recommend first when it has a lower success rate vs. an MMA? And personally, if I was going to do an MMA, Dr. Kasey Li is the only surgeon I would even consider going to even though I would have to travel far.

It was my understanding that UPPP and nasal reconstruction is necessary for the high success rate, and that the MMA alone does not help with soft palate and nasal issues. I could be wrong, obviously, and will discuss options with a doctor if I end up seeing one.

And since you are in Boston, what about consulting with Dr. Steven Park, who is in New York City?

http://doctorstevenpark.com/

Thanks for the link.

[msla]

I have had my deviated septum surgically repaired prior to my sleep apnea diagnoses. I feel that it was a beneficial procedure. Based upon my sleep apnea and the information I read on UPPP, I felt that not having this done to me was the correct option. The percentages defining "success" with this surgery still left me with the probability that I would still have severe sleep apnea. You will have to come to a conclusion with which you are comfortable.

[cberesh]

New to the forum. 25 year cpap user, I have had surgery and I have one word for you on considering the surgery.

DONT

Dont do surgery. Its not worth it.

[ems]

As one who is going to have a septoplasty/turbinate reduction to improve my pap therapy tolerance, I am very sympathetic to your issues. But I would stil be very careful regarding the surgery I chose because as I mentioned in previous thread, the success rates in keeping people off of cpap permanently are not great.

+1

B-N - the type of surgery you are contemplating isn't exactly simple surgery. I hope you investigate this from every angle. I would have to be dragged in by my hair before I'd have the surgery you talked about. I wish you well... no matter what you decide.