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#196079 - 04/04/18 08:29 PM Sleep apnea resulting from oral cancer surgery?  
Joined: May 2009
Posts: 132
mightymouse Offline
Senior Member (100+ posts)
mightymouse  Offline
Senior Member (100+ posts)

Joined: May 2009
Posts: 132
Connecticut
Hello, all - It has been a long, long time since I last visited the Forum. I'm happy to report that my hard palate (half of it that is left) is healthy and I'm coming up on 9 years cancer-free.

I'm writing today because it seems my palatectomy/maxillectomy may have altered my soft palate tissue to the point that I have severe sleep apnea (AHI = 30-45) when I sleep on my back. Since 2016, I've had two major surgeries (shoulder repair and spinal fusion from T10-S1) that required me to sleep on my back for long periods of time. The spinal fusion, as it's extensive, may have me permanently sleeping on my back. I knew that I had been waking myself up during the night with gasps for air when I slept this way, but I was not aware it was ALL NIGHT LONG until my daughter returned from college last November (I have been living alone for the last five years). She could hear me stopping breathing constantly throughout the night.

I saw a sleep specialist yesterday who is one of the best in my region of the U.S., and he has only seen this type of apnea once before, in a patient who also had radical palate surgery. I do not fit the profile of a "typical" sleep apnea patient in any way, as I'm thin, healthy, and a non-smoker and non-drinker. The sleep specialist said that Yes, my palatectomy left my soft palate hanging down in the back of my throat, and that that is what is causing my sleep apnea. A CPAP is useless (I tried it for a month -- it made it far worse).

Has anyone here had a similar issue? If so, what did you need to do to treat the sleep apnea? Surgery has been proposed as a possible only solution, but I am trying to avoid yet another major surgery!

Thanks!


Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
#196081 - 04/05/18 12:32 AM Re: Sleep apnea resulting from oral cancer surgery? [Re: mightymouse]  
Joined: Jul 2012
Posts: 3,117
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,117
NYC
Mightymouse,

Congratulation on being cancer free for 9 years! As far as the sleep apnea, many head and neck cancer patients suffer from this mostly from radiation, and although some only temporarily during or soon after treatment, some do permanently. I know I did during my various treatments, and thereafter for extended periods, and wouid sleep on an incline on my side, and in a recliner chair mostly sitting up, although it may be difficult or nearly impossible for you to do so. There is a specific body pillow to help with this as just using more pillows or sleeping on an incline bed may not be as ideal.

That’s exactly how I would awaken several times during the night, trying to grasp my breath. For me, it was a matter of time before it corrected itself.

I have no other suggestions I can recall, besides seeing your doctor, but maybe a SLP, Speech and Language Pathologist, for exercises to help strengthen the soft palate, if that is possible.

Good luck with everything!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






#196086 - 04/05/18 02:40 AM Re: Sleep apnea resulting from oral cancer surgery? [Re: mightymouse]  
Joined: Jun 2007
Posts: 10,155
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,155
PA
Chrissy, Im very sorry to read about your ongoing problems. I have not experienced sleep apena so Im very sorry but I do not have any ideas for you. From what you posted, your sleep specialist has had at least one other OC patient so it seems that they must be similar to you in having the sleep apena after their treatments.

I wanted to make sure you are very, very careful with having surgeries after going thru rads. Patients who have had rads will have very slow healing in areas around where their cancer was located and radiated. This can turn into a big problem!!! If you start thinking of having the surgery, make sure you get a second opinion at a different facility. You will also need to make certain your surgeon is familiar with how different an OC patient is and how they must be treated differently than other patients. If your surgeon is not well versed in treating OC patients, you do not want them to do your surgery. You may even need to do hyperbaric oxygen treatments (HBO) before having this type of surgery. This is why its so important anyone who would be doing your surgery has experience with OC patients.

Best wishes with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#196087 - 04/05/18 10:51 AM Re: Sleep apnea resulting from oral cancer surgery? [Re: ChristineB]  
Joined: May 2009
Posts: 132
mightymouse Offline
Senior Member (100+ posts)
mightymouse  Offline
Senior Member (100+ posts)

Joined: May 2009
Posts: 132
Connecticut
Thanks, Christine and Paul, for your replies! I'm going to be very cautious as I deal with this apnea issue, since I do NOT want to have yet another major surgery (this will be surgery #11 for me), especially in my mouth/head! My OC doc here -- ENT who specializes in head and neck cancers -- is going to coordinate with my sleep specialist, and I expect I'll have an appointment -- or several -- with the OC guy as I go through making this decision. I had forgotten about the radiation/healing thing, Christine! Thanks for the reminder! I'm sure my OC doc will be super-cautious about that, and I'm also sure he's on top of things like oxygen dives and whatever other precautions need to be taken, IF I go the surgery route.

In the meantime, I'm attempting to sleep on my side (with this crazy-long spinal fusion -- not comfortable!), as I think the apnea is not an issue when I'm on my side. I'm not sure of that -- will have to investigate through having them add a side-sleeping portion to my upcoming sleep study.

I'm trying to look at all of this as a mountainous bike ride (50+ miles). That's what I did in my previous life (I mean before about five years ago, when things really came undone). Big hills; big descents. Just have to settle into the climbs and take it slow. As I used to say in my head, during hilly races, "Slow and steady wins the race." It worked, too.

Thanks, all.


Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.

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