Hi everyone  

Well here I am day 7.  The past 7 days have been a bit of a blur - drugs etc will do that to you every time!

I had both procedures done on Wednesday (UPPP & Transpalatal Advancement) and spent Wednesday night and Thursday in Intensive Care Ward.  Apparently I was fine but they wanted to keep a close eye on oxygen levels, bleeding and various other important things post this surgery.

I had a PCA pump (fetanyl pump) which I self administered for the first 3 days.  Clicked away and found it very helpful.  I didn't realise how effective it was until they took it out.  Day 4 started being very uncomfortable (because the PCA pump was removed maybe?) as many seem to report.  I have taken some photos in my mouth to see what all the fuss is about and now realise why I am in so much pain.

The back of my throat looks like a war zone.  The uvula area is discoloured, swollen and red - maybe he lasered that area?  Eating (being a natural debridement) is meant to clear away the 'dead stuff' and hopefully I'll be left with a nice throat - this is the result of the UPPP operation.

The roof (or palate) of my mouth is another story.   It appears as a large "T" as you look into my mouth.   The soft palate has been removed and advanced and the hard palate has been cut back and it all closed up - this is the transpalatal advancement surgery.

My tongue is very swollen and I cannot speak properly.   I sound very nasally - if you didn't know me you might think I might be a bit deaf with the manner of my speech.

Swallowing, as you can imagine, is a new pain.  Just think of the worst strep' throat you could ever have.   Little sips of water are even difficult.  

Now at day 7 I am still on my really strong pills (a morphine type tablet) and soluable paracetamol.   I am managing lumpy stuff but still only the consistency of baby food really.   I haven't tried any warm drinks.  Sleeping kinda comes and goes - I usually wake during the night needing pain relief.

I'll keep adding to this diary and hopefully it may help people who are considering the surgery.

I am due to see the specialist next week for a follow-up appointment and another sleep test is to be conducted in 2 months time.

Love to hear from anyone and everyone re: any questions if I can help and/or feedback.

Cheers,
Mardi  

Hi everyone  

Here I am day 13.

I saw my ENT a few days ago for a post-surgery follow-up.  He said I was healing very very well (good girl doing all the right things) and was rapt with the progress.  He wanted me to start eating 'normally' asap and to start experimenting with lumpier and lumpier foods.   Over the last few days I have done that and was surprised to see that I could eat, albeit small amounts, normal foods (not just mushy stuff).  I had to make sure I chewed it up pretty well and took my time.  Occassionally if I pushed it a bit my throat would be a bit sore afterwards but I just kept up the Panadeine and was ok.

I'm still not sleeping well, waking up every few hours, but in the morning I'm starting to notice that I'm not yawning by 9am and not falling asleep in the afternoon.  I feel like I am getting more air into my mouth and lungs.  More energy too.

My speech is starting to improve and swallowing isn't so painful (still is though).  People are able to understand pretty much 90% of my speech - maybe the swelling is starting to come down?

My biggest complaint is that everything that goes into my mouth is ending up in my nose.  Sounds gross I know - but it is true.  Liquid or solid - doesn't matter - all ends up in my nose.   I think I might have to 'learn' how to eat and drink differently now - not sure if anyone has any suggestions?   I am connected to a box of tissues and am going through heaps.  My nose is continually dripping and I'm blowing it every 15 mins or so.  Not sure if this is normal or not - probably is but it is definately not a pleasant experience.   I tried to swill some Difflam around in my mouth (antiseptic/mild anathestic) and it ended up in my nose - almost threw up.  Any help in this area would be much appreciated!!!!  

Cheers,
Mardi  

Quote:

My biggest complaint is that everything that goes into my mouth is ending up in my nose.  Sounds gross I know - but it is true.  Liquid or solid - doesn't matter - all ends up in my nose.   I think I might have to 'learn' how to eat and drink differently now - not sure if anyone has any suggestions?

Unfortunately this is a side effect (not very common) of the UPPP, and has been mentioned here on a number of occassions. You should discuss this with your ENT. In some cases in sorts itself out anywhere out to 12 months post op....everyone is different......unfortunately in some cases it never clears up. I recently spoke to a sufferer who had the UPPP just over 2 years ago and he is still having problems with this.......mostly with fluids. IMHO......it's the ENT's fault, no matter what they say. In my own case, thankfully, I didn't have this problem.

  

Quote:

I am connected to a box of tissues and am going through heaps.  My nose is continually dripping and I'm blowing it every 15 mins or so.  Not sure if this is normal or not - probably is but it is definately not a pleasant experience.   I tried to swill some Difflam around in my mouth (antiseptic/mild anathestic) and it ended up in my nose - almost threw up.  Any help in this area would be much appreciated!!!!  

Something else that I didn't suffer from, thankfully. Again, you should discuss it with your ENT.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

I'm glad you're healing well and the pain is beginning to lessen.  What you  describe about everything going up your nose is exactly what kids born with a cleft palate experience--which makes sense coz it sounds like that is basically what the doc created for you.  It might be helpful to talk with someone who works w/kids who have clefts---whether an ENT, speech therapist, or feeding specialist.  just an idea.

take care, keep your spirits up, and I pray you continue to improve and to have better sleep and energy.

Hi Daniel & embryopathy,

Thanks heaps for your comments.

Gawd...today day 14 and the problems I mentioned are continuing and getting worse.  I can't even drink water without it ending up in my nose.  The only way the avoid it I have found is to hold my nose while I drink.   Asfaras eating goes, holding my nose doesn't help.

Might have to get an earlier appointment with the ENT cos I don't think I can put up with this - have to eat and drink!  

Does anyone know of any good websites for feeding specialist help  

Cheers, Mardi

Ok..here I am day 15 and back to the ENT for yet another appointment.  The food and drink going up my nose became unbearable and started to create headaches etc.

I have developed a 'hole' as a result of the Transpalatal Advancement.   It has occurred where the 3 joins of the palate come together.  The hole goes up to the nasal cavity and hence, so does whatever is in my mouth.

3 solutions: 1st = leave it a week and see what happens, hopefully it will heal up of its own accord.  2nd option = obtain a prosthetic palate to try and 'close' the hole until it heals, cost = $200+, and 3rd option (and last resort) = more surgery to close the hole.

I have an appointment next week to go back to the ENT and see how the hole is going.

Trying to stay positive!, Mardi  

MardiinAustralia wrote:

Ok..here I am day 15 and back to the ENT for yet another appointment.  The food and drink going up my nose became unbearable and started to create headaches etc.

I have developed a 'hole' as a result of the Transpalatal Advancement.   It has occurred where the 3 joins of the palate come together.  The hole goes up to the nasal cavity and hence, so does whatever is in my mouth.

3 solutions: 1st = leave it a week and see what happens, hopefully it will heal up of its own accord.  2nd option = obtain a prosthetic palate to try and 'close' the hole until it heals, cost = $200+, and 3rd option (and last resort) = more surgery to close the hole.

I have an appointment next week to go back to the ENT and see how the hole is going.

Trying to stay positive!, Mardi  

Mardi,

I suggest that you wait awhile. It's not comfortable, but the other options (at this stage) suck.

Not 100% certain, but I seem to remember reading somewhere or other that surgical correction of this problem is very hit and miss...........not to mention painfull in the extreme.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Thanks Daniel.  

Yes once again you are right re: the surgery option.  I asked the ENT if it was a simple matter of a stitch or 2 to close the hole and he said nope.

Hi everyone  

I am 3 weeks 1 day post surgery.

Had to go back to the ENT today again because of the hole that had developed in my palate as a result from the Transpalatal Advancement.  

The good news is that the hole is healing on its own.  It is still there (I know that for a fact because I am still having whatever I drink come out my nose) but the fact that it is healing is encouraging.    I asked my ENT to take out the stitches on the roof of my mouth which he did.  It is definately a lot more comfortable now with the visible stitches gone (the permanent dissolving ones remain).   I have been given the all clear to go back to playing sport which I am very excited about.  He wants to see me again in 3 weeks to ensure the hole is either closed, or is very nearly closed.   At this next appointment my next sleep study will be arranged hopefully.

The ENT indicated that I am still quite swollen and when the swelling goes down I will notice an improvement in my snoring - I have only noticed a minimal improvement thus far.   The ENT also stated that when the scarring commences everything will tighten up and become smaller and therefore the improvement will be greater yet again.

I still can't drink or eat anything hot as my mouth (palate especially) is very sensitive.   Cold drink is uncomfortable because when it goes up through the hole to my nasal cavity it gives me like a mini-head freeze.   I'm still cutting the crusts off my toast/bread but this is more because of my sensitive palate rather than my throat (UPPP surgery).

Cheers,
Mardi  

Hi everyone  

Starting running and playing sport again yesterday (3 weeks 3 days post surgery) and it felt great.  No problems at all.  I did dose up a bit on pain killers before I left home mind you but felt no pain in running in my mouth or throat with the increase of air intake.

I feel great this morning   however I am easing myself back into exercise (having the day off today) and not being silly.

Had a lovely breakfast of eggs and crumpets this morning and feel fantastic  

Forgot to mention in my previous post about my speech.

My speech is still not back to normal.  My voice tone sounds the same however because of the Transpalatal Advancement I sound very nasally, like I have a cold or something like that.   Also because of the swelling of my palate, with the pronounciation of some words it sounds like I have a slight speech impediment...not severe, but you can hear it on some words I say.

Apparently this will go when the swelling goes down and scarring starts to happen (everything will kinda shrink).

MardiinAustralia wrote:

Hi everyone  

Starting running and playing sport again yesterday (3 weeks 3 days post surgery) and it felt great.  No problems at all.  I did dose up a bit on pain killers before I left home mind you but felt no pain in running in my mouth or throat with the increase of air intake.

I feel great this morning   however I am easing myself back into exercise (having the day off today) and not being silly.

Had a lovely breakfast of eggs and crumpets this morning and feel fantastic  

Well done..........and you can relax knowing that The Wallabies beat The All Blacks over the week end. High fives on this result.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

pmsl...amen

AND the Crows won...AND the Eagles won...AND Carlton won..*sigh*..top weekend for Aussie sport  

Hi all  

I had my combination surgery on 2nd July 08 and here we are 27th August 08...almost 2 months post op.  I am supposed to be having a follow up sleep study done over the next couple of weeks however, I am STILL SNORING so therefore my ENT has decided to put off the sleep study til October.  His thoughts were to let the swelling settle down even further and to allow the scarring to happen before the sleep study is done.

Occassionally I wake up feeling like I've had a great night's sleep but usually I still feel like I've been drinking all night and start yawning by around 10ish.  My husband says I have periods of quietness but overall my snoring is just as bad as it ever was.

The back of my throat is fine, I don't have any discomfort or pain from that part of the surgery apart from having a dry throat sometimes (UPPP surgery).   The roof of my mouth (from the Transpalatal Advancement) is still quite tender and sometimes painful - depends on what I have eaten I think.   The hole that had developed between my mouth and my nasal cavity has pretty much closed up thank goodness!

I have booked my sleep study for 6th October 08 so it will be very interesting what the results are!

Cheers, Mardi   [/u]

MardiinAustralia wrote:

Hi all  

I had my combination surgery on 2nd July 08 and here we are 27th August 08...almost 2 months post op.  I am supposed to be having a follow up sleep study done over the next couple of weeks however, I am STILL SNORING so therefore my ENT has decided to put off the sleep study til October.  His thoughts were to let the swelling settle down even further and to allow the scarring to happen before the sleep study is done.

Occassionally I wake up feeling like I've had a great night's sleep but usually I still feel like I've been drinking all night and start yawning by around 10ish.  My husband says I have periods of quietness but overall my snoring is just as bad as it ever was.

The back of my throat is fine, I don't have any discomfort or pain from that part of the surgery apart from having a dry throat sometimes (UPPP surgery).   The roof of my mouth (from the Transpalatal Advancement) is still quite tender and sometimes painful - depends on what I have eaten I think.   The hole that had developed between my mouth and my nasal cavity has pretty much closed up thank goodness!

I have booked my sleep study for 6th October 08 so it will be very interesting what the results are!

Cheers, Mardi   [/u]

Mardi,

Best of luck in October.

Please post on your progress.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)