swallowing issues still.

[robynabc]

HI,

I have not been around much lately.  Hope everyone is doing well.  I just thought I would update on Eric.  He is doing well and was able to start college in January.  Eric still has coughing issues and a little bit of swallowing problems.  His vocal cord is still paralized and he is going in March for his follow up MRI.  Eric has asthma and when in the hospital the nurses missed that he got thrush.  HE had to take a losenge to get rid of it and we are still convinced that the thrush  medicine is the problem with the coughing coupled with the fact that he has numbness in his throat.  He says it is a burning sensation.  Plus when he talks alot he has coughing.  Our doctors just don't seem to think it is a problem but it is for him.  I guess my question is-  does anyone else have this burning and coughing problem?  Our docs said this is the first time they have had this complication.  It seems somewhat rare. ANd our docs are fantastic and have been doing this surgery forever.  They are fantastic surgeons.  The good thing is that his voice is back.  That is a relief but really with his asthma, I hope that other problem gets better. IT is better since the surgery but we have not seen any improvement in a few months.   And because this is not something our docs see with this surgery I wonder if there is anymore info out there.   In every other way Eric is doing very good.  I do see that there is still a bit of fatigue at times.  I guess that will take a little more time.  I am so grateful that he is alive and his face is in great shape. In fact, the face thing was practically a miracle and he looks exactly as he did before the surgery.  ANd no other balance or weakness.   I am still convinced that our Doctor-Jenkins is the best at the facial nerve than any other doctor.  We have been told that several times.

I read posts occasionally and want to say I hope everyone is doing well.  I think of you all often.  It is amazing how you notice others with the same condition.  It is comforting that we are not alone.  Even though I wish none of you had to have this.  Peace and Love.

Robyn

[sgerrard]

Hi Robyn,

I remember when you were going through all that last year. I am glad to hear that Eric has his voice back, although I am a little confused, you also said his vocal chord is still paralyzed? Maybe that has something to do with the burning and cough. If he got his voice back, there is hope that the rest of it can resolve too. 4.5 cm is big, I think your surgeon did do a great job preserving as much as he did.

Many nerve issues seem to take time to heal and recover, sometimes a year or two. Don't give up on it yet; I think he will improve some more during the course of this year. Its great that he is in school, getting into normal activities will help him overcome the fatigue.

Best wishes to Eric and you.

Steve

[robynabc]

HI Steve,

Sorry for the confusion.  Eric' vocal cord is still paralized but the other side compensated and he has his voice is back even though the vocal cord is still paralized.  The dcotors did say that it does take time and they said that this nerve is the longest of all them and it goes down into the chest and back up.  One thing they say all the time is -  "there is no reason to think it has been severed."   Sometimes,  I wonder. BUt they said they checked the nerve after surgery and it showed stimulation.   He does not feel much on that side in his throat.   4.5 is huge and it was pushing on the brainstem bad.  I think that is why he is having problems in this area.  We are so lucky and know it.    Of course,  if you have a really good surgeon your chances are great. 

My ex has a co worker that had a 2CM and faired much worse.  I think he did not have good doctors.   Remember this Newbies.   There have been great advances and your chances of getting through this in great shape is very good.  Love and Peace. Robyn


Thanks for the reply.

Robyn.

[Jim Scott]

Hi, Robyn:

I was glad to read that Eric is recovering and back in school.  The cough and throat numbness/paralyzed vocal cord are problematic but I trust these issues will eventually wane, as the others have.  At least Eric's face is mobile and he can talk, both major problems that he has overcome.  Fatigue does take time to resolve, but it will.  Eric sounds like a fine young man with a great, supportive mom.  I wish them all the best. 

Jim

[Meagan]

I had a feeding tube for about 3 months and it seemed no one had swallow issues so it is kind of rare but hey i lived through it.  I still have an occassion cough (very much better)...people at work would comment on how i needed to see a doctor for my cold....my voice has gotten stronger and you can understand everything i say clearly but it was hard the first 6 months....have Eric hang in there....i had one the size of a tangerine so when it is bigger it seems to cover the swallow muscles....

Meagan