Tuesday, September 27, 2011

[T+24mos] Thank my lucky stars

Its now two years since MMA. I continue to thank Dr. Riley and Powell for inventing this innovative surgery. It is amazing that there is no real alternative to this even after 25 years of medical progress since then. Where am I now?
  • Physically in a good shape, no TMJ, numbness on the right chin, lower lip and tips of my front upper jaw where it meets the teeth.
  • Emotionally still a little hard, when old friends who have not me since surgery say that they barely recognized them. Luckily these are a minority.
  • Wake up on most mornings with vivid dreams and an elevated heart rate, though my resting heart rate is very low.
  • Cannot violate sleep hygiene rules! If I stay up late, then I will pay for it with increased tiredness for the next few days. If someone wakes me up at 4 am (or I wake up) even for a few minutes, then I am dead tired and have to sleep till 9 am to feel refreshed.
  • pjgirl  recently told me that staying well hydrated before going to bed helps a lot. We human beings have been breathing air and drinking water for ever. It is amazing how often we need to be reminded to do this well :-)
  • Afternoon somnolence is absent on most days, sometimes I have take a 15 minute nap. Probably a good thing anyway. Grogginess has largely disappeared.
  • Seasonal summer allergies make the symptoms worse. Have to control it with lavages and occasional Flonase.
Sometimes I feel like perhaps I should try a dental appliance to treat the residual issues but my jaw is streched out after the MMA and it would be a slow adjustment. For now, life is pretty good, dental app is an option I will leave for hopefully the far future. Here's toasting to my and everyone's good health!

Wednesday, September 15, 2010

[T+12 mos] Resetting MMA outcome expectations

A few days ago, I attended the MMA get-together at Sunnyvale. About 25 people showed up. Last year, this was a week before my MMA and a life-saver. I honestly could not have gone through with the surgery without the encouragement from everyone in this meeting. I remember vividly being jealous of everyone on the "other" side. Can't believe I am there, I saw the same look on people who are just about to undergo MMA!

One thing became clear in the meeting. Almost everyone who had MMA were still dealing with sleep issues. Except for one or two people no one reported a complete cure. While many reported improved RDI or in some case no improvement in RDI, they seem to have subjectively improved about 50% (about mine). Everyone agreed that subjective judgement on how the individual felt was the most qualitative judgement as opposed to looking at the overnight sleep analysis report. Everyone agreed that MMA was worth it and if they had a choice, they would do it again. Many were considering auxiliary surgeries for further improvement. Others were trying out various kind of drugs (reluctantly), while others have gone back to CPAP.

 Another thing, most people in the meeting were suffering from allergies. There was a strong correlation to allergy control to improved sleep quality. I find this the case for me as well, where I have a highly inflated turbinate on my right nostril. After having undergone two unsuccesful RF turbinectomies, treating it with Flonase (somewhat successful), and the doc removing the underlying bone behind the turbinates during MMA (somewhat successful), I am still trying to deal with swollen soft tissue. My latest attempt is Dr. DS's lavage made out of Pulmicort respules. I mix this in 240 ml of saline solution and do a lavage before going to bed. This seems to have shrunk my turbinate quite a bit. On days like this when I can breathe much better, I feel so much brighter the next day.

The other think I learnt in the meeting was that I had 0% Stage 3/Stage 4 sleep. Western Joe was kind enough to look through 3 of my reports and give his perspective. Clearly my sleep efficiency had improved and also my REM sleep as measured in % time had improved, but there was 0% in Stage 3 and Stage 4 in all my reports. It is hypothesized that Stage 3/Stage 4 are very good for the brain recovery. There was one another lady, who brought her reports. She had surgery two years ago, her first post MMA study showed Stage 3/Stage 4 but the recent study showed 0 Stage 3/Stage 4. She also showed increased RDI. She was the first one where she was regressing after MMA I know of. Couple of others like Western Joe, and Cupertino Joe who are 6/7 years are holding up well. Western Joe told me that he slept for 9 hours and even then it took about an hour to emege from his grogginess. He is the one whom I could strongly correlate to, felt good that I was not the only one. Have to get the doc to take a closer look at my report.

A couple of years ago, the doc told me that 90% of people who had MMA are completely cured. He defined cure as RDI of less than 5. Now I know that this is clearly bunkum. Some people now claim that the expectation should be a 50% improvement after MMA. Sad to say, I am afraid there is no magic silver bullet. Still I think most people are happy that afternoon somnolence has disappeared and their energy is holding up well during the day. I'll take my blessings.

Sunday, May 9, 2010

[T+7mos] Not completely cured

MMA seems like an eternity ago though its been only 7 mos. I am already beginning to forget a lot of my recovery details. What a blessing.

So after taking my own sweet time for a post-op sleep study, I went into the new Stanford facility in Redwood City. Seemed more like a 3-star hotel, than a sleep center. The attendants told me that the sensors were the same, but there was upgraded software and hardware. I asked them if the baseline was the same as before, and they assured me of the same.

Got the results back, RDI is at 15, before phase 2 surgery it was at 31, before phase 1 it was 26. Lowest oxygen saturation is at 92%, previously was at 90%.  Soreness in my lower left lip, numbness in my upper gums remain which seem typical for a person at this stage after MMA. Still getting used to my changed appearance, and yes I have heard everything from "you look younger" to people not recognizing me.

All TMJ issues have completely disappeared. I can happily chomp on an apple for many months now. At work, they make this giantly thick subs with all the veggies in it. No problem wolfing it down. I seem to be also be able to thrust my lower jaw forward without any problem. 
 
So how do I feel subjectively? Afternoon somnolence has disappeared largely. I feel a lot more energetic, concentration levels are higher. Somedays I have been able to put in over 18 hours of work! However I am still tired in the mornings typically after 9 hours of sleep though not as much as before.

Net results? Considering that I have had this problem all my life, this is a huge step forward. At the same time, I am a bit disappointed that my problems have not disappeared like many other peoplewho had MMA.MMA was reported to have cured more than 90% of the people, with cure defined as <5 RDI. I don't see this on the sleepnet forum, though most people are happy to get a significant (?) improvement.

Having fired my biggest salvo with MMA, not sure what else I can do. Definitely not going back on CPAP again, also hopeful of no more surgeries.

Need to think about the game plan moving forward. Sleep hygiene is not too bad, though it could be better. It is hard not to work or watch TV late into the night. Taking "Flonase" when allergies are bad, and this seems to make me much less tired in the morning.

The adventure for getting near "normal" continues!!!

Monday, December 28, 2009

[T+3mos] So did the surgery fix the problem?

By far every conversation about my surgery ends with this question. The conversation begins with why I had this surgery.

Early on, I used to explain that it was sleep related, I had a condition called sleep apnea, blah, blah, blah ... and I learnt very quickly that most people simply did not understand the problem. The most notable reaction was that they knew so many people who snored or had some form of sleep apnea and they were confused on why I would undertake such a major surgery. Thanks to "pjgirl" and "sleepyhead" rather than talk about sleep issues, I now explain that I had a very narrow airway at the base of my tongue, about 4 mm compared to a normal person of about 10 mm and that the airway collapses when I sleep and people could potentially die of this condition. That's it, people get it! They quickly move on to talk about how I look after surgery etc.

So did the surgery fix the problem? I still don't know how to answer the question. I try explaining that it is a complex problem involving both physical and neurological conditions. The physical condition might have been fixed but the neurological condition may take a while to clear as I have had this problem since childhood. There is something called an overnight sleep test, I need to take it again, I could do it in 3 months, but I am not rushing it. Blah, Blah, Blah ... again I have lost most people. I still need to work on this answer because this question comes up time and time again.

Other than that I am progressing well. used to snore lightly before and after phase 1 surgery. Now my wife says that I sleep without a peep. My fitness is equal to that of prior-surgery. I am jogging regularly again at least four days a week. I am able to climb the nearby hiking trails relatively easily where I used to struggle till about a couple of weeks ago. My upper chin pain has resolved completely, my lower chin pain and the wooden teeth feeling are both improving. Being a foodie, I am so glad that my taste has not been affected at all!

One new problem which surfaced in the last couple of months is that the lower jaw sometimes locks up and there is a sharp pain in the muscle over the lower left jaw's surgical cut. This is very disconcerting. The problem usually happens late in the night or early morning. I have been advised a warm compress and facial massage, potentially even physical therapy. Luckily so far I am able to unlock within a few seconds. Not sure if it is a TMJ issue or a musculature problem. Hopefully will resolve over time.

Its the time of holidays. On days when there is apnea fog and my head is clear, I can't help but give thanks and hope the progress continues.

Tuesday, November 24, 2009

[T+9wks] Steady progress

Today I grabbed a tablespoonful of trail mix and was able to chew it down. Last week, I ate a pizza for the first time since surgery. I probably could have eaten it earlier by a week but I did not have the courage to rush it. And oh yes, french bread at last, dipped in olive oil and balsamic vinegar, heaven! My bite has settled down, earlier during the recovery I felt like my teeth were not quite totally aligning. Now with chewing and my musculature developing, I feel like it is no different than pre-surgery.

The other thing I have noticed is that I can stick my lower teeth a good 5mm beyond my upper teeth. Before surgery, I could stick it out a good cm beyond my upper teeth. Earlier during the recovery, I could barely get to the point of upper teeth. Basically my musculature in my mouth has improved to the point where both horizontal and forward-backward motion have improved considerably and chewing seems normal again. Why is sticking the lower jaw out important, you ask? If I have to wear the dental appliance (God forbid), this is the only hope of advancing the lower jaw without surgery again.

Most of the swelling and pain leading from the bridge of my nose to the upper mouth is now gone. My right side of the face is also softening and is becoming like the normal left side. My lower right lip and chin has gotten better. People ask me how I feel. I don't know quite how to describe it, except that it is a combination of burning, tingling, numbness and pain. Its rapidly improving, so I am really hoping for complete recovery there. My teeth are still numb, now I can feel that it is really where the gums come in contact with the teeth which are numb. Even at the 8 wk mark, if I bit into something hard, I was afraid that my teeth would fall, this was real scary. The doc assured me that I could no damage and that it was just the crazy re-entry period of getting some feeling back. Hopefully the Pinocchio "wooden teeth" feeling will go away.

I have re-entered my social life for the last couple of weeks after a lot of trepidation. A majority of the people who look at me have commented that I look different. Some have said that I look younger. Some of them have said that I look like a completely different man. Some say that my nose looks different, some think its my jaw while most others can't place what about me has changed. I have learnt to accept all these without wincing or taking it as a compliment. My wife calls me "Version 2.0"!

My fitness is coming along. I have been hiking and I feel like I am about 80% pre-surgery. To be honest, I have not really focused on fitness, I am glad to be recovering from surgery and have been enjoying life too much.

So how's my sleep?  Before surgery, my criterion for success was that if I could sleep for 8 hours and wake up refreshed I would call it a resounding success. What I see now, is that on most days I sleep for about 8.5 hours and wake up reasonably refreshed. I would give it an B+ at this point. There have been some scary days though. The other day I had a heavy lunch with some wine and promptly feel asleep all the way from restaurant to home in the car. Bad memories! With work being re-introduced into my life, we'll see how I cope with the additional stress.

I have regained back about 5lbs of the 10lbs I lost after surgery. With Thanksgiving looming in a couple of days, I am sure that I will regain the rest by this weekend!

Wednesday, October 28, 2009

[T+5wks] Arch bars off

Yesterday, I spent pretty much the day going into Stanford, checking in, donning the designer gown, getting knocked out. The anasthelogist used me as a human pin cushion, he came up empty on the first three veins before he found a vein suitable for a one year old to knock me out. This is probably because I did not have enough fluids in my system. The hospital says that you are not supposed to have anything to drink or eat after midnight, but he actually gave me clearance to drink clear fluids till 10am. Then the hospital advanced my time because of a cancellation (which never materialized) and I was too scared to drink water. In retrospect I should have had plenty of water that morning. They put some local anaesthetic in my mouth as well, removing the arch-bars was trivial. Had to stay in the hospital for an hour after the procedure before my wife drove me home.

So how do I look? I posted some photographs on the gallery. I am growing increasingly comfortable about my appearance. Even my wife and daughter who thought my nose got flattened real bad, say that I am looking better after the arch-bars are removed. Hope to get better in the next month or two. Dr. Riley said that there was a office procedure to "fix" my nose but said that he used it only 1% of the time. I hope to be in the other 99%.

Sleep continues to be erratic. Most days are good, I am able to sleep about 8.5 hours, waking up reasonably clear headed and no afternoon naps. I would call it a success. Some days its been same same old, with 10 hrs of sleep, waking up lethargic. This brings back bad memories. Of course there is no work load, so its way too early to judge. One thing I notice is that pre-surgery my dreams used to get terminated prematurely, but now have gotten real long, the stories in my dreams come to a full end. The dreams are chained as well, a new one starts after the previous one ends.

Energy is still about 60%. I did a fairly big hike with lots of stops to catch my breath. I am hoping to really work on fitness now. Hopefully start using some light weights as well.

Hello, hello, hello! Some words are difficult for people to follow, especially on the phone. I have to concentrate on it and repeat. Somewhat frustrating but hopefully will clear out soon.

Having the arch-bars off is real cool, more importantly the suspension wires. The suspension wires were the ones really contributing to the inflammation and the altered look. After removing them, I see inflammation and cuts in my gums. Teeth feel real wooden, especially the front teeth. Dr. Riley says that it might take 6 months to resolve. Hopefully this will be sooner. I still feel numb around my right side of the face, especially the lower jaw. There has been a big improvement in the last couple of weeks.

Dr. Riley cleared me for some light chewing this weekend. Looking forward to eating some Gnocchi, the insides of a burrito, Indian Idli and Sambar, Persian Bagholo Polo and Kashk-E-Bademjan in my favorite restaraunts. Can't wait!

Tuesday, October 13, 2009

[T+3wks] Uneventful

Finally the last rubber band came off today and Dr. Riley said that I could go home and practice twice a day mouth opening exercises twice a day. He also set my arch bars and the suspension wires removal on Oct 27, the 5 wk mark. I was hoping for 4 wks but I'll be okay with 5 weeks. He said that right after the arch bars removal, I'll be able to eat flaky salmon, of course I'm vegetarian :-), so I'll look to the 7.5 wk mark where he said I could anything including French bread. I'm sure that my now everyday dreams will be filled with luscious sandwiches.

Dr. JC who was one of the doctors who saw my surgery described it as uneventful, which is great in surgical terms. However Dr. Sesso said that while the left side was straightforward, the right side was "technically" more challenging. I definitely feel it a lot more on the right side of the face both in terms of numbness, swelling and soreness. Still I am now able to sleep horizontal on the pillows, survive on 2 doses of 2 Advil's a day. MaryLynn with Dr. Riley's office said that I was one of the easiest patients around, since I hardly call their office. Today I woke up before the 7am alarm. That's a miracle, rarely has it happened in my life. Of course, its too early to prejudge sleep. Energy continues to be low, still crashing ocassionally at odd hours.

I am now able to open my mouth a good one inch, wolf down soft rice with some spicy pulverized vegetarian dishes with a baby spoon. This is such a welcome relief from just doing soups and shakes. And oh yes, coffee! Last week, my wife was so happy that she drove me down to "Barefoot Coffee" my favorite coffee shop in the whole wide world. I had "Symphony in C" (Decaf). I could not feel the entire spectrum of taste as before but boy what a treat!

Swelling is down quite a bit. However my nose continues to be flared up with wide at the bottom nostrils. This probably is the biggest contributor a different appearance so far. My ever-truthful neice of 12 yrs old who saw me for the first time a few days ago, described my appearance as "freakish". Almost the same uncle but quite different as well. Of course, adults are more diplomatic. They always say nice things on my face. Later however I find that they have remarks like "Will we ever see his old self again", "I didn't expect him to look that different" etc. Nothing nasty, but enough to jar the pschylogical feel of oneself.

Was able to hold my concentration enough to finish reading Fareed Zakaria's "The Post-American World" in bits and pieces. Count down for 2 weeks when the suspension wires and arch bars will be removed at Stanford outpatient under a local anasthetic. Can't wait for that day.

Thursday, October 8, 2009

[T+2wks] Definitely around the corner

2 weeks, its a whole new world. I am so tempted by real food when I see the family eating. Other day I saw my son eating home made pizza's, oh looked so delicious. I also desparately want to get rid off the arch bars, but this is a couple weeks away.

Sleep: Very erratic. Sleeping at different times of the day and night. Too early to draw any conclusions. Recently started sleeping horizontal on the pillow (no sitting up, Yay!). The jolts which used to wake me up, gradually subsided and are now gone. The fog which dogged me for most of my life when I wake up is now gone. I have experienced this only a few times on my life including after phase 1, so no celebrating yet.

Diet: Still mostly on liquid diet. Mostly homemade soups and mike shakes with the protein powder infusion. The milk and egg protein powder lends itself to less taste than the whey powder, it also seems to have more protein. So that is definitely the winner. Looking forward to more culinary adventures next week. Still have occasional drooling. The sensation in my mouth is still not quite there. My son made a chocolate mousse for my birthday, I could it go real silky and all, but I could taste the chocolate only partway. I will count my blessings.

Swelling:  Down 90%+ as of today. Still little swollen around my upper lips, will get better when they take my arch bars down. Still feel a lot of numbness and soreness around both the right upper and lower lip, also right cheek. Left side of face is much better, almost normal.

Energy: Got adventurous enough to try to walk a couple of miles to school with my daughter on International walk day. Got real tired. Came back and took an hour's nap. Took out garbage and reclaimed my manly duty!

Speaking: Not supposed to talk much, this is okay as I more of a quiet type. No slurring detected so far, though it is hard to talk with rubber bands.

Pain:  Only taking two Advils, 2 or 3 times a day. Apparently I cannot be too casual about them, or the pain does come back.

I must say that I am extremely pleased with Dr. Sesso (partner of Dr. Riley and Powell) on the post-surgical care and pain management. He promptly returns phone calls on any questions we have. I get invited to his office daily if I wanted to, to clean out the nose, ask questions or just complain. I have always felt like "royalty" after meeting with him. This has happened after both my phase 1 and phase 2 surgeries, so he is a real keeper.

All in all, it looks like a classic MMA surgery recovery so far.

Saturday, October 3, 2009

[T+10 days] MMA Tips

Over the past few days, I have heard a number of tips from "veterans" which I am compelled to share. As always, consult your doc for your own specific situation.
  1. Get your post-surgical prescription pain medicine meant for home use before your surgery. Some medicines such as Oxycodone may have a national back-order and you do not want to be stuck in pain trying to find a pharmacy which stocks it.
  2. Get your teeth cleaned before surgery (Shelby's blog). It will be hard enough to clean teeth after surgery first via salt water rinses, later via water pik and even later via baby tooth brush. It helps to ward off secondary infections of the mouth.
  3. Dr. Riley's suggestion on showering twice a day after surgery. The moisture in the shower really helps the nose.
  4. Very important to take maximum pain medications during recovery. Get ahead of the pain and stay ahead (Susan's suggestion). I had heard this numerous times but did not quite get it. I was trying to "finesse" the pain medications and unnecessarily suffering. Besides the pain does not help healing.
  5. Get enough calories (Roger Arrick's suggesion), so as not to lose weight. I thought losing weight after surgery was a bonus. NOT! The body needs all the right calories and nutrition to help heal faster.
  6. Icing the face, works better than ice, pea or gel bags (Pinski's suggestion).
    Well, the gell bags are good, but I just found it easier to get the quart size (heavy duty) Ziploc bags and fill 2 of them with 1 part rubbing alcohol to 3 parts water. Then, put each of them in another separate ziploc bag (to keep them from leaking). I also taped them shut as well as zipping them shut. Then, put them in the freezer. They will get really cold but will not freeze solid..just be slushy, and will conform to your face better. I used a simple thin tea towel (but an old piece of thin bedding sheet would work also) to wrap them in, with just one layer between the ice bag and your face and pulled it up and tied it up at the top of my head.

    Other tips at:

    Sleep Net Pre-MMA Tips






Tuesday, September 29, 2009

[T+1wk] Around the corner?

Its been exactly a week since we woke up dark in the night to drive to Stanford. We packed all the things needed in the hospital a small white board (very useful) and an iTouch with "Speakit" app on it (not useful, never had the energy to write on it), a personal pillow, medications, mirror (didn't use), camera (useful).

I was bleary eyed, when the admissions clerk at Stanford asked "Do you have a living trust in place?". I was taken aback but replied in the affirmative. He then asked "Yes, but does it cover terminal conditions?". I mumbled something and I was easy pickings then. He followed it by which religious priest preference I wanted. After that the paperwork ended.

Operating Room and ICU

The docs showed up all ahead of time. They looked real sharp, introduced me to a new doc Dr. JC. He was visiting from Canada and pursuing a one year fellowship under Dr.RP. He had finished 10 months of it already. He was going to be an observer. I felt good that there were an extra pair of eyes on me. JC is going to start at the Univ of Manitoba in a couple of months.

Dr. Richard Novak showed up for anesthesiology instead of Dr. Atkinson. He has been working since about 20 years with Dr.RP on this kind of surgery. I was worried about any complications due to anesthesia because it was a 3 hour procedure, phase 1 was only 45 minutes in comparison. He was a seasoned hand, he made me feel secure. Dr. Robert Riley did a classy thing. He dispatched a nurse half way through the surgery to reassure my wife that everything was going okay.

The next I know was trying to be waken up at ICU. I won't lie, it was miserable. Pain control in the ICU was real hit and run. Each time they gave morphine, I would feel a warm flush. Morphine was not working out too well. They started giving out Diloudid, a stronger painkiller. The problem with this was that it was making me nauseated and made me throw up. Every time, I went to sleep, I could feel the familiar feeling of OSA, throat collapsing. The docs assured me that they had advanced me by 12mm, the collapse was due to all the swollen tissue.

They started to give anti-nauseating medicines (Zafran) to prevent me from throwing up. Dr. Riley came by, cut my bandages which was a welcome relief. He then proceeded to peek down my mouth and proceeded to say that it was a disgusting site half jokingly because it had all kinds of food and blood. Apparently the Chow Mein I stole from my daughter's plate the previous night was all there. He asked the ICU staff to clean it up ... he was worried about secondary infection. The ICU nurse was fantastic, given the fact that I could barely open my mouth, he water-pik'd and really cleaned my mouth out. ICU was a bit noisy all night, they were trying to attend to a couple of serious patients all night. Lots of doctor's and medical personnel would come down and run an entire protocol, it was a quite interesting except for the state I was in.

Anyway moral of the story, think twice before eating greasy chinese food the night before a big surgery.

Move to Hospital

Next day I was wheeled out of the ICU into the general hospital. I was real happy to see that they had allocated a personal room. Last time for Phase 1, I had to share a room with a 80 year old man whose kidney was just removed. He was completely out of it. He swore and shouted almost continuously and loudly for the entire two nights and days I was there. Normally my heart would go out for him, but I was in no state to dole out sympathy myself. The hospital was full and they could not move me anywhere else.

This time, I was glad to have the room for myself. Dreamette was next door. Several people from the MMA meet group showed up to greet us. It was SO nice to see them and talk to them. They were so supportive. I still had a billion questions and still going through fairly aggressive pain management. In the hospital, they cannot give morphine, but they started giving Oxycodone which is also a narcotic. It was not doing the trick, the had to supplant it with intra-muscular Demerol as well.

The pain-meds would simply "zonk" me out. I used to sleep constantly. It was in stacatto bursts of an hour. On the Saturday, all the doctors had left town. They sent Dr. Jason who was a visiting doctor training for a fellowship under Dr. Riley and Powell to handle the dispatch paperwork. We were really nervous in having to make the decision to leave Stanford. One thing they won't tell you, but Stanford will put pressure on the doctors to get their patients out as soon as possible. The doctors will simply tell you that you have more of a chance of infection if you stay longer at hospital.

One thing I noticed about Stanford nursing is that it had become so much better since my phase 1, 2 years ago. When I came in for phase 1, a lot of care was handled by assistant RN's who are barely trained for 2 months. Many of them don't even know the proper bed etiquette or a simple act of testing for blood sugar. This time I noticed that the care was almost entirely done by full fledged RN's. They were outstanding, every one of them, of course some more than the other. I was real happy with Stanford care this time.

Weekend was real quiet in the hospital, many rooms became empty. I had taken a peek of my hugely swollen face and positively got depressed over it. The food at Stanford is terrible, the thing which they give you as health shake is loaded with sugar and junk. My sugar levels were crzay because they had given Steroid to control the inflammation. Insulin shots were not doing the trick. We decided to leave.

HOME AGAIN


The 20 minute drive home from Stanford was a real killer. You don't pay attention to the quality of CA freeways till you had an MMA! The micro-jolts on the freeway drove up the pain. One important thing we learnt from Phase 1 was to fill Oxycodone for home before the surgery. It can be in short supply and be real hard to find. You don't want to be managing pain without it. We also had to supplant it with Oral Demerol as well, which we had not filled earlier. My lovely wife was running around crazy to get a new order written and filled which was available at only one Walgreens at El-Camino and Grant.

My 13-yr old son thought I looked like a monkey. My 18 yr old nephew agreed. I was really beating myself up on taking the decision to undergo a crazy surgery like this. I was really depressed. This was easily the lowest point. Susan, a friend of Julie came to us like an angel. Even though we had been adviced to stay on top of the pain medications, we were hesitant in using all of them. She called us, reviewed all the medicines, told us not to worry about taking Demerol, get control of the pain and stay ahead of the pain. She asked us to take all the medicines on time, pain or no pain. This was a hard lesson to learn.

Next day Roger told me that I was not getting enough calories. He told me the importance of not losing weight and eating right. He narrated some personal examples with himself as well. This was a turning point, I had a big banana-milk shake with protein powder and immediately began to feel better. After that there has been no turning back.

That's watermelon juice, not Tylenol!



My swelling had come 80%, I could see my features now. Dr. Sesso (his post-surgical skills are outstanding, every time I meet him I am so happy that he is my doc for post-surgery care), got me to the hospital, flushed my nose and got me going.


The magic recipe, pain-medications every 4 hours, rain or shine. Milk shakes, cream of wheat, cream of soups etc. Not great but okay enough calories. Nasal flushes with salt-water and Afrin every 6 hours. Showers 2 times a day (the steam works wonders). Salt water rinses at least 6 times a day. Occasionally ice using gel-packs for 20 minutes on the face. Sleep only sitting up, amongst my "pillow cloud" (this is real hard to do for the entire night). I shaved and learnt to use the tooth water pik (shown in the pic).



The humidifier is great. This one is a cold-water atomizer with no filters, minimizing the chance of infection. Stanford has a mask which constantly blows moisture out. It is very important to use it so as not to get the mouth dry. This one substitutes as an okay substitute at home.

Its been a week since I had surgery. I am relearning the meaning of the word patience. My son looked at my pre-op pictures and thought I was almost there. Finally God is showing me a way around the corner.

Thursday, September 17, 2009

[T-1wk] Self-doubts and Inconsistencies

As the day of surgery approaches (Tuesday Sep 22, 2009), I have been plauged with the thought that perhaps MMA is not the right decision. What if it was idiopathic as one of the doctors had diagnosed? What if I my brain had permanently been rewired to deal with this problem since childhood? My wife's sister who is a doc, thinks this whole space age surgery is a waste of time. She thinks it is all mental now. My 13 yr old son thinks I am crazy to have my jaws sawn. My wife wonders whether I simply cannot live with it? I wonder about all of this myself.

Via the blog, I reviewed my medical records again. Over the years, though the first doc thought it was idiopathic insomnia, a number of subsequent sleep studies proved that I had either mild or severe OSA ranging from 25 to 31 RDI beyond doubt. Some docs thought I was Mallampati II and some thought I was Mallampati III. Some thought I was mildly rethogathic but most think I am severely rethnogathic. Dr. Riley said that he was going to advance me by more than the usual 12 mm. Over the years I have given all kinds of CPAP a fair shake. I have tried the dental appliance and drugs as well. The fact of the matter is that I am not compliant to any one of them.

Dr. Li thinks that RDI should be treated even if it were symptomless. I wonder if RDI can be normal after my jaw advancement and still suffer from the symptoms. In the end, it seems like there is no perfect science. I ultimately have to be responsible for this decision.

Last week I attended the MMA meet here at Sunnyvale. About 20+ people, many of them who had MMA surgery showed up, many of them from out of town. They shared their experiences and tips. Even though several people were not cured, 100% of the people were happy that they tried MMA, most as a last resort. Some were having adjunct procedures after it. I kept staring at their faces, to see if I could tell. All of them looking perfectly normal with beautiful faces. Some of them wore braces, but none as a result of the MMA. I was especially jealous of the people who were wolfing down their kabob's 5 wks from MMA. I will be eternally grateful for those people who showed up to support me. It is a testimony to humanity.

I remain greatly comforted by these two messages last week from very well respected MMA veterans. One was from SeattleBill who said "I was making the correct decision and would be glad by the end of the year" and the other by WesternJoe who wrote that "I was in the hands of a great surgeon and will do fine".

I am now at peace going into surgery. I know the first week after surgery will be bad but hopefully not as bad as my soft tissue surgery. My expectations are first that I will return to at least the same health I am at now without any longer term numbness or other issues. I will be ectstatic if my RDI becomes normal, i.e. less than 7. Otherwise any big improvement will be welcome as well.

I thank god for all the opportunities. I think this will be a 2nd life for me and I have to put it to good use.

Wednesday, September 9, 2009

[T-2 wks] Questions to the Surgeon before MMA

Questions to the surgeon 2 weeks before MMA

Sep 9, 2009


These are questions to Dr. Robert Riley and Dr. Donald Sesso about 2 weeks before surgery when I went to see him to get my casts done and also my X-rays taken.

1. How often will he perform nasal cleaning? Will he do it on weekends as well?
Surgery is on Tuesday, nasal cleaning will be on Friday. Nose is very dry after surgery, needs to be irrigated every day. Will also need to take showers twice a day. The moist air helps a lot. They never see patients on weekends but are available on call.


2. Counter-clock wise rotation, is that practiced Dr. Riley and Powell? This is used for mandible-movement and aesthetics?
Counter-clockwise
rotation may be performed, it depends on molds. The molds are cast in hard stone and viewed on something called an articulator. Decisions are based on the stone cast.



3. Do they ever use screws instead of mandibular plates based on anatomy?
When this surgery was first invented in 1984, they used to wire the jaw shut similar to a bone cast. For the last 10 years, they have been using titanium plates with 4 screws and 2 corticular screws. They always use both, never only screws as the outcome is better. These plates and screws are fully removable but are usually left in as the patient does not feel them.



4. How much airway increase can I expect?
Studies have shown that 8mm
bony advancement shows little long term sleep apnea reoccurence. They shoot for 12mm on both jaws but really as big as possible. The airway increase is variable and depends on the patient.



5. How many days in the hospital?
3 days in hospital. The release criterion from the hospital is be able to drink and be comfortable on liquid pain medicine. Expect less days in the hospital than the uvulopalatal flap surgery. Also 2/3 of the patients report that jaw surgery is easier than soft tissue surgery.



6. Will you use the unit of blood I gave last week?
Patients on an average lose about 400cc of blood. 50% of patients need blood.


7. Do I need a pain management specialist? Do I need a full-time nurse during the first week if my wife is working?
Pain Management surgery is not routinely needed. You don't need anyone full-time help, maybe for a couple of hours per day.


8.  I have had RF turbinectomy 2-times and my turbinate is still swollen. What if they shrink my turbinates from under during MMA?
They open the turbinate from the inside, remove the bone inside as it does not perform much function. They also remove additional tissue. Nose will bleeds due to this. This procedure is much better than the alternative where an ENT specialist simply goes into the nose and removes the turbinate from the outside. He does not expect to add to complications due to this.


9. Will the staff have access to Drs. RP if needed during their time off the following week? How long are they away?
Yes will have access. They will be away for only a few days.


10. My bite is perfect now. Will my teeth need to be adjusted after surgery for bite-correction?
Since the muscles are relaxed during surgery there is a chance that the bite may be off after surgery. Hopefully this does not happen, but if it happens, then a few teeth may need to be adjusted.



11.
I have had Uvula removed before with you and you made a deep cut during that time. With the movement of the jaw, will
there be any issues with swallowing liquids?

No, this is a very rare occurence.



12. Can my lower lip numbness pain be treated from the removal of cyst in the last surgery since he can see my nerve under the wisdom tooth?
Typically not. Since it is 18 months from the last surgery, there is a chance that the nerve will continue to heal till about 3 years.

Thursday, June 11, 2009

[T-3mos] Thoughts on Medical Insurance

As a Silicon Valley Engineer employed with a high tech company, I have been blessed with good medical insurance. Aetna PPO has always been good in taking care of all my bills. Having said that, it can still be tricky navigating through it. Both Dr. Robert Riley and Dr. Kasey Li do not accept any medical insurance. However their office staff is excellent at working with the insurance companies. The hospital and anaesthologist bill have been picked up 100% (thank you Aetna). Over the years I have learnt some do's and dont's and applied it to my MMA.
  1. Get a written quote by email from Dr. RR's office. This includes all the procedures including the medical code numbers.
  2. Call Aetna to figure out how much of this they will cover. Note that Aetna will pay only what they consider is "reasonable". The difference has to be picked up by you. Also since they are out of network, they will pick up only 70%
  3. Aetna does not give what they cover in writing. However they will tell you what it is, so get the name of the person whom you are talking to, also make sure that they make notes in their workbook for all the procedures. I had to talk to 2 people in Aetna to get this right.
  4. In my case, I tried to convince Aetna to consider Dr. RR and Dr. NP as in-network as an exception. I had to convince them that they were no other local in-network who were qualified for performing MMA. Amazingly Aetna accepted to consider them as in-network. Aetna gave it in writing.
  5. Back to doctor's office, they talked to Aetna,  and confirmed in writing that the new fee structure was acceptable to them. Total out of pocket expenses for the MMA are $710. Sweet! Carol, the office manager at Dr. RR and Dr. NP's office, says that this is one the best insurances she has ever seen.
Moral, communicate with insurance and doctor's office and get as much in writing as possible. I had not done this for one of my earlier procedures and paid dearly!

Monday, October 1, 2007

[T-2 yrs] Uvopalatal Flap, GA and yet another turbinectomy

After being scared to death about the recommendation of MMA from Dr. Li, I went to see Dr. Riley. He looked down by throat with a fiber and various other mouth and nose examinations. He also thoroughly went through my medical history. After all that, he recommended that I go through Stanford Phase 1 protocol.

Stanford Phase 1 protocol consists of uvopalatal lap where they trim the uvula and fold it back and sew it so that it does not create a rough edge. It also consists of GA (Genioglossus Advancement), tonsillectomy and adenoidectomy. I chose to believe him. After all I was nowhere psychologically prepared for an MMA. He told me that there was a 70% chance of success, he defined success of RDI less than 5.

We'll see if I am in the lucky 70% very soon. Monday morning is D-day. Signed off from work with some combo of sick leave and disability.

http://www.sleepsurgery.com/pdf/Sleep-Disordered-Breathign.PDF

One thing I wish I did was to met Riley or Powell a long time ago. Perhaps I would not have bothered with the dental appliance, he could straight away tell based on the fibre and X-ray.

Went out on the Internet and read all the Sleep Apnea blogs. Most of them are excellent but talk about MMA. I found one great blog about GA and UFP.

http://www.ski-epic.com/snoring/surgery.html

Brian was even kind enough to talk to me on the phone a few minutes ago. Fabolous guy, he is so glad to have gotten it done. Hope it works out for me as well as it did for him. I took my chances with Phase 1. The surgery itself was well done. Dr. Riley was particularly aggressive, he took a deep cut of my uvula, took out all my other soft tissue and did the GA as well. It was a horrendously painful recovery. It took me all of 6 weeks to get back to work.

After about 3 months, I went for a repeat sleep study. RDI had increased from 25 to 31! Right after my surgery, I felt great for about a month. Looking at the x-rays right after surgery, I noticed that my airway had increased from 5 mm to 8 mm at its narrowest. Three months into it, it looked like the tissues had relaxed and it was back down to 5 mm again.

I was so disappointed!

After that I discovered SleepNet, probably the most informative place on the web. An informal survey on sleep net patients who had soft tissue surgery alone showed that not more than 30% patients benefited from it. Also the general consensus is that uvula does not contribute to sleep apnea. If only I had known this, I would have never gone for soft tissue surgery.

To top it all during all the phase 1 x-rays, he found benign cyst under my wisdom tooth. Joy! He warned that if it was not removed, it might grow and eventually crack the jaw. Three months later I had follow up surgery and he took out the cyst. At the same time, he did RF on the back of my tongue (which I did not feel a thing).

At the end of all this, I was pretty much back to my crappy old self minus my soft tissue and several thousand dollars lighter. I now knew the pain of full anaesthetic surgery and recovery in a shared hospital room! BTW, the turbinectomy was a failure as well. My turbinates were swollen once again and I was snoring again as well!

Friday, September 1, 2006

[T-3 yrs] Children, Children

In 2006, we started hearing a lot about sleep apnea in children. Obviously these issues are best dealt with when they are children, otherwise it could severely affect both their physical and mental growth.  Our anatomy is tied to genetics and anatomy is a leading cause of OSA. My father has always been a heavy snorer but as far as I can tell, he escaped apnea. In his younger days, he used to take afternoon naps but only on weekends. Now in his late 70's and retired, I see him taking naps in the afternoon on a regular basis. He has been an early morning riser and I have never seen him show any typical sleep apnea symptoms.

Concerned for our children we went to see Dr. Rafael Pelayo, who is well known as a peadetric sleep specialist at Stanford. My son then 11 did not exhibit any symptoms, however he does have a narrow jaw. After much discussion with the doctor, he explained that the apnea measuring equipment is not quite sensitive enough to detect mild apnea for sure. He also said that even if my son had mild apnea, the old surgery he would recommend was tonsillitis which were tiny for my son. We just decided to punt.

By now I started worrying about my 5 year old daughter. She had huge, I mean huge tonsils. She used to snore, sweat in her sleep and routinely fall asleep in the car on a long car ride. Most importantly she was having a hard time swallowing and had taken to more or less living on milk alone. Back to Stanford ... Guillemault and Kasey Li both recommended removal her very large tonsils.  We had to find a surgeon. Having been to Stanford Sleep Center at least a billion times,  I had become intimate with several staff members. They all recommended that Dr. Kasey Li was the best for children. How can anyone but the best perform surgery on my baby?!

Dr, Li took out her tonsils and adenoids. The surgery resulted in a squeaky voice for a few months and then corrected itself. Thank god. All her symptoms of sweating at night, pain during swallowing food and snoring disappeared. Hopefully everything will be smooth sailing for them for the rest of their life.

Tuesday, June 6, 2006

[T-3.5 Yrs] Turbinectomy and first Surgical thoughts

Early 2006, I went back to the Organon study at Stanford because I had the relationships. I was seen by Dr. Kannan Ramar and the supervising doctor Dr. Jed Black. Some deviations from the previous year, now he sees a deviated nasal septum, enlarged turbinates on both sides, significant retrognatiha, mallampati class III. Interesting to see 2 doctors from the same place cannot make similar observations.

Recommendations was to try Flonase for nasal allergies. More importantly they asked me to consider seeind Dr. Kasey Li for RF ablation with the turbinates to improve CPAP compliance. I went to see Dr. Li for RF turbinectomy. It was pretty much a waste, my turbinates got swollen within no time and my CPAP compliance did not improve.
When I went back to Dr. Black  later that year, he said that I ought to think about surgical options. He thought I might need soft tissue surgery and perhaps also MMA to fix me. During my numerous overnight sleep studies at Stanford, I had become intimate with the staff. Several suggested that Dr. Li or Dr. Riley/Powell were the best. They all seemed to have a slight bias for Dr. Li particularly around children.

I went back to Dr. Li later that year. He took a quick look at me and within no time suggested that I should get an MMA. The thought scared the crap out of time and I literally ran out of the office. Seeing my scared look, he did offer soft tissue surgery as an alternative but warned that there was a high chance of relapse within a few years. He thought that with MMA, the chance of relapse would be much longer (~15 years).

Interestingly enough, the current thought by the docs is that if you advance the jaw by greater than 8 mm, then there has been sleep apnea relapse in less than 10% of patients. Wonder what the truth is!

Monday, June 6, 2005

[T-4 Yrs] Miracle Drugs (NOT)

By now, I knew that I was losing the struggle with CPAP. The Stanford Sleep Study put me on a research drug called R-modafinil which is basically a long acting version of Provigil. The study called for volunteers and I was desperate to try anything. Interestingly enough I found an old article in Time which claimed it to be a miracle drug. This was a drug given to fighter pilots on mission critical flights or for soldiers in combat where they had to for several days without sleep. The drug was supposed to transform society and change the future of mankind!

This drug was pretty nasty to me. The drug would not let me sleep as it was a stimulant, but I would be dead tired. In spite of the drug, I would fall asleep on my desk at work with sheer exhaustion. It was pretty nasty. The doc told me to stick with it as he said that I would adapt to it.

Well, one fine day, I started developing a severe pain in the heart. Several hours later, it was still hurting like crazy in my heart muscle. I ended in the hospital emergency, luckily the hospital confirmed that I was not having a heart attack. I stopped the drug and dropped out of the study. A day later my pain in the heart went away. That was the end of my experiments with drugs for sleep apnea.

Tuesday, March 15, 2005

[T-4.5Yrs] Evolution and Dental Appliance

Early 2005, Dr. Mark Abramson came to lecture at one of the AWAKE meetings at Sequoia Hospital in Redwood City, CA. He had an interesting theory on the origins of sleep apnea and attributed to evolution.


 He said that as human beings evolved from a 4-legged animal to a 2-legged gait, the curve at our neck has contributed to narrow airway. First time, I ever heard of such a theory, seems plausible. He believes that in four legged animals like cats and dogs, there is no sleep apnea because the spine is held straight during sleep. Then “Home Erectus” came along and tried to walk on two legs, developing a curved spine alongst the way. This creates a “choke point” weakness in our neck for us two legged animals. Clearly we got some more evolving to do!


Dr. Mark Abramsom is the inventor of the OASYS system which is a Oral/Nasal Airway System. It advances the jaw and also has a couple of extenders which sit inside the mouth and attempt to spread the cheeks and nose out. I had to go through a fair amount of adjustment in the first couple of months because it was too tight or because it was not advancing the jaw enough. Mark is a great guy, charged about $2000 initially and made all the adjustments for free later. 

Tried it for over 6 months, tried a combination of dental appliance and CPAP for a while too. It was rather uncomfortable and I had compliance issues. I used to wear it for about 6 hours a night. About 8 months - 1 year into it, I gave up on it. I didn't see a big improvement anyway.

Monday, March 1, 2004

[T-5Yrs] Auto-CPAP

Jan 2004, more insurance changes later and another doctor later brought me to trying Auto-CPAP. My compliance with CPAP with different kinds of masks was pretty poor. My compliance with the dental app was also very poor.

The doctor Dr. VA sent me to an overnight sleep study in Cupertino. Confirmed OSA with 31 events per hour, supine AHI of 61, lowest Oxygen saturation was 83% thought less than 1% of the time was spent in saturation below 90%. Apparently at this time I had also started to snore which was never present before.

The doc sent me for a yet titrating overnight sleep study at Cupertino sleep lab. Nasal-CPAP with a humidifier came up with an optimal air-flow pressure of 7cm was found to be adequate for me.

At about July that year (2004), a Stanford study ad doing a research study looking for volunteers caught my eye. They were looking at blind drug study (more later). As a part of this study, I saw two doctors that year who were responsible for pre-screening patients. The first one was Dr. Mujahid Mahmood. He diagnosed me as soft palate with significant redundant tissue, long uvula, 2+ tonsils, Malampati grade II, high-arched palate, small jaw and some retrognathia. I was still having sleepiness during driving, taking afternoon naps 2 times/week. This inspite of sleeping for 9 to 10 hours every night. His recommendation was to simply continue with CPAP.

My sleep specialist asked me to give another try at CPAP. This time around the CPAP machines had improved. There was now a builtin tank to provide warm humid air. I had also discovered the Stanford Hospital Sleep specialists. I started participated in some sleep studies. As a part of the protocol, the doctors check your background, do your EKG and run a baseline sleep study. Great way to interact with numerous doctors. One doctor in particular, Jed Black recommended an excellent mask. This one didn't leak and was reasonably comfortable. My compliance to CPAP improved. I did not see a great improvement on my overall symptoms. Jed and his band of doctors asked me to stick to it. CPAP is supposed to be the gold standard for sleep apnea.

Thanks to my great insurance, I even got myself an adaptive meter which varies the amount of pressure through the night based on the required pressure. It  even monitored the number of events and even the pressure over the night. I hated it but desperately wanted it to work. I always ended up removing it after a few hours early in the morning. Zed and his gang of Stanford specialists told me to stick to it, they even suggested specialized CPAP psychiatric counseling. An year later I was off CPAP.

Recently I ran across this wonderful paper from Powell/Riley which talks about the poor compliance to CPAP and why surgery is the way to go.

http://www.sleepsurgery.com/pdf/Tail-End-Of-Dog.PDF

The road was pointing to surgery. I was losing the long fight against having surgery!

Friday, June 11, 1999

[T-10 Yrs] Nasal CPAP and Idiopathic Hyperinsomnia

So that was then I discovered CPAP. I was already off to a rough start. The CPAP machines then were primitive compared to the ones today. They made a lot of noise, there was no humidifier, the masks were barely functional. I persisted with them though my compliance was not that great. This went on for 3 years, leading upto 1999.

My daytime sleepy symptoms had not become better. I went back to my PCP and he sent me to a local sleep specialist in San Jose.

This doc looked at my report from 3 years ago. Interestingly enough the study indicated that I had only 27 Obst Apneas, RDI of only 10 and an apnea index of 1 over a 6 hour study window. Looking at the graphs, the Oxygen saturation level is well over 95% except for a couple of times. The sleep specialist physician in San Jose (whose name I will omit) concluded that I had Idiopathic hypersomnia and NOT OSA. Idiopathic means "I don't know the reason for your problem".

Recently I was reviewing my data with SeattleBill and he showed me that the doctor included one critical piece of data 151 TA without respiratory events. He thought that I may have a loose sensor lead or some such thing during this study, because all my subsequent studies showed severe OSA's. Of course I have had numerous overnight sleep studies at Cupertino and Stanford labs which proved beyond doubt that I had OSA (more later).

Anyway at that point I started exercising, lost some weight, slept on my side and learned to live with it.