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Need help on what to do next please


Posted by eyeswideopen on April 04, 2006 at 00:47:18:

Hello everyone. I've been helped greatly on this forum especially by Mike in Boston but really need some more help. I had a somnoplasty done for social snoring (didn't wake myself up or have apneas). Unfortunately the procedure went wrong as I gagged as the doc didn't give enough anaesthetic and the probe hit back of throat and caused collateral damage to back of throat which has resulted in severe scar tissue which made snoring worse and caused apneas. I then had a UPPP using coblation and radiofrequency to the base of my tongue about 6 months ago. This has made my snoring and apnea worse. I had a sleep test done twice first before the UPPP which said I had upper airway resistance with snort arousals which were waking me up and very fragmented sleep. After the UPPP I had another sleep study done which shows that I now have hypopneas and apneas. My RDI is onoly 3.5 per hour of sleep but I have numerous awakenings (7 during the night) and 38 arousals per hour of sleep. She said I was having great trouble breathing and although not snoring as much was wheezing a lot and finding it hard to breath. I went to see an maxillo facial guy in Guildford in England which is where I live and asked about the MMA/GA. He said he needed to do an MRI scan and think about it. He said I have a considerable amount of scar tissue on my palate and at back of throat and the problem with an MMA is that the scar tissue is so rigid that it may not come forward when the jaw is pulled forward. I also have a very small nasal pharyngeal space and tongue base obstruction. Diagnosis was upper airway resistance with hypopneas and apneas caused by multi segmental pharyngeal collapse due to the other surgeries I had done. He says he does not do much work for sleep apnea and will have to consult collegues and I am to go back to him in a month for MRI and another consult. He also said I may lot a bit odd if I have an MMA and not be happy with my looks. He will not do the GA alone as he says that this does not work as the tongue pops back into the original position after about a year as the supporting structures (jaw) have not been pulled forward. I have tried BiPap for a few weeks now but have noticed no change and wake all through the night and very early in the morning (usually 4am). Am currently getting about 4 hours sleep a night. I also have an 8 month old baby who sleeps through the night and always has done and he will sleep until 9 or 10 and so will my husband while I am awake and frustrated at 4am every morning. My sleep doc thought I may also have co-existing gastro-oesophageal reflux although I am not sure about this diagnosis. I am getting seriously depressed about all this especially since I have a lovely little baby and this should be a really happy time for me. My husband does not understand what I am going through and says "just live with it". He is very against any more surgery but the BiPap is not working. I would like to go to Stanford to see a doc out there and get a really professinal opinion from the best but am worried that they may say that the scar tissue is so bad that they cannot do anything and MMA will not work because of bad scar tissue. I cannot go on living like this. I look awful and am terrible depressed due to lack of sleep. My marriage is falling apart after just one year as my husband can't understand why I am so miserable and tired all the time. I don't have insurance for going to Stanford and it will cost an awful lot of money but I do have a flat I can sell to try to raise the cash. In due course I will try to sue the original doc who burnt the back of my throat as all the docs say that this has caused all the problems in the first place. Also somnoplasty was meant to be minimal and I thought the probe should switch off if it came out but it came out of palate and went into throat and burnt it into a big blister that lasted 8 weeks. Maxillo guy said he did not like the look of my palate or throat. I don't want to waste my money as I may need it especially if it comes to divorce but I do need the best help and best opinion. Does anyone know of MMA/GA not working because of lots of scar tissue that stops the soft tissue from coming forward with the jaws. I really am at my wits end and very depressed as this is affecting all my life especially marriage, personal relationships and the bringing up of my beautiful little boy. Please can anyone give me advice on whether they think I should go to Stanford etc. It will be a 12 hour flight for me and cost a lot but I'm not sure the guy in the UK has done enough MMA's and does not know enough about sleep apnea etc. Please help as I can't go on much longer.

Thanks eyo

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