Surgery to Repair Soft Palate

Viilik70 said:

Soft Palate

I am in the same boat with the same cancer. I have also had part of my lower jaw removed because I've been through radiation twice, so don't freak out. First time my jaw came through just fine I was seeing a Dr at St Louis University Hospital and they suggested cutting away this damaged part of the palate and putting like a proththetic piece in that could be taken in and out that would allow me to talk more like normal because it would block my sinus out so I wouldn't sound so nasally anymore and I would suppose that would help with the food always trying to go up my nose like you struggle with also. I was just afraid to get my soft palate cut on like this because without the prosthetic piece in the hole would be so large that I couldn't speak without it from what my ENT said. I am 45 and a father of four and have been through so many surgeries that I thought enough was enough, so I stopped before I had this surgery. I talk pretty nasally right now and have to repeat myself two and three times when talking to most people. Pretty frustrating sometimes, but I'm blessed just to still be around my family. I don't know if we have the same thing going on, but if you would like to get into contact with my Dr in St Louis PM me on here and I can give you his info. I am about five years out from my second go-round and I too have problems eating and getting choked, but I just keep drinking, eating and swallowing and slowly it's coming back so don't give up hope. The swallowing therapist told me not to eat or drink anything, but being stubborn and going through a few bouts of pneumonia I got through it and like I said am getting better at eating and drinking. I still drink and some times I get a leaker out of my nose but I laugh it off and move on. I hope you can find some answers and please post what you find out because I would love to hear what you find out. Sorry for rambling but I think I have some of your same hurdles. I pray the answers will come and you will get some peace of mind. God bless

John J

Hi John,

Are you in the St. Louis area?  or just come here for treatment?

I am in St. Louis - Affton area.  I've had cancer twice now - first in 2007 - tonsil - and was treated it Mo Bap.  The 2nd time was just last year - and I had a total laryngectomy.  I was going to SLU, but the doctor said he couldn't do anything.  My old ENT at Mo Bap told me to see a specific doctor at Barnes, I did, and I am here to tell about it.

Lorna

2007 & 2014

Viilik70 said:

I am in central IL and I went

I am in central IL and I went to Dr Varvares and he always had an answer for me. I was just at the point to where I didn't want anymore surguries and wanted to just get rid of the feeding tube and the trach to live a some what normal life and that is what I've been doing for the past few years, thank God! Contemplating getting the jaw surgurey to fix the dead part of my lower jaw that SLU took out, but from what I've read on here that surgery is a beast.

There are plenty of good doctors to go to in St Louis and they see so many patients that helps also. In central IL we are kind of limited. I have also been out to John's Hopkins in Baltimore and they have an excellent care there also with good doctors. Hope you are doing good Lorna! God Bless

 

I got a letter in the mail earlier this year that Dr. Varvares has left St. Louis University, and is now at Harvard.  I don't know who (if anyone) replaced him, as I ended up going to Barnes-Jewish.

I am doing well. Ups and downs, but always moving forward.

Lorna

DarleneAB25 said:

Thanks for responding!

I definitely don't feel like you were rambling so no apologies necessary! I am so sorry that you had another bout with NPC and even more longterm side effects from the second round of treatments. I have been using many of the same techniques as you for dealing with my soft palate struggles; eating slowly, chewing carefully, lots of water, and repeating myself often when speaking especially on the phone. Focusing on the things that I am thankful for and choosing to laugh instead of get upset definitely makes a huge difference in the amount of joy I have in my life. It would be nice to not choke on food, have liquids and food come out of my nose, and have improved speech, but I am so nervous about the surgery causing more complications. I too am surgery shy and have gone out of my way to avoid other surgeries over the past 8 years. Honestly, at this point in time my speech issues are the most frustrating for me. I am very social and love to volunteer at my kids schools, church, food banks, etc. but my speech issues have held me back from being as involved as I normally would. My ENT is wonderful and has been with me from the beginning so I trust him fully, but he doesn't perform the type of surgery that I would need and is referring me to a specialist. I will let you know what I find out after I have my consultation. It is always nice to hear from someone that has personally gone through a procedure that you are looking at and hear their feedback. God bless you too.

hi darlene, i just want to say i understand you fear of speaking now.  i am a laryngectomy and have a  lot of trouble talking and being understood.  it has been 3 yrs for me and i have started to come out of my shell.  i have even spoken publicly 3 times, once with a congressman.  so, please try not to let cancer take any more from you.  get out there and do what you enjoy.  people will understand and be patient with you.  i will always have trouble talking but i will continue to do it anyway.  i went almost a year without being able to talk and it was absolutely the worst and most loniest time of my life.  i hope you soon allow yourself to do what you enjoy again and get back to volunteering.  i don't its hard but take it one step at a time.  one foot in front of the other.  good luck.

God bless you,

dj