Nerve damage permanent.

[robynabc]

Hi,

I have not been able to post lately.  But I still think of you all alot.  This site and the people here are amazing. 

I just thought I should let you all know something about Eric that might help someone.  As many of you know Eric had an amazing recovery almost 2 years ago from an extremely large tumor pressing on his brain stem.  His facial nerve was spared and he recovered very well except his nerve (don't know the number)  that controls his vocal cord and swallowing. His vocal cord is paralyzed and he has alot of problems with dryness and coughing in his throat and when he has something that affects his nerves he gets a spasm in his throat.  It still can be scary sometimes.  Like one day he hit his hip on the door when playing with the dog and it made his throat spasm and he has these coughing attacks.  He is a bit better, but not that much.   They kept telling us that they thought it would come back.  Well,  he went to the ENT this week and they scoped him and the vocal cord is still paralyzed.  They said they believe it is going to be permanent.  I have to say I was very upset by this.  I think of my 20 year old dealing with this for the rest of his life and it is hard.  We are going to go to a speech therapist.  He does okay with it but he does have asthma and when he has a cold it is a bit scary.  I know this is a very rare complication and we are grateful that everything else worked out so well. 

And it is alot better than it was after his surgery.  He had no voice for 6 months.  He could not talk on the phone and I had to be his voice he had to whisper to me and I would relay it  when in a restaurant or on the phone.  And he had trouble eating. That is better.  His voice is pretty good.  The other vocal cord adjusted and moved over so that he can talk now.  And the eating is better.  He has to be careful.  Heat and cold can make it start up.   Remember,  those of you going to surgery.  This is an extremely rare complication.  The doctors said they have never had this happen to any of their other patients.  And they have been doing these for 25 years.  So,  it is unlikely that anyone else will have this happen.  Just don't want to scare anyone that is faced with surgery. 

So,  just thought it was important to share with everyone in case it helps anyone else.  He is going to be okay.  Just sad that he had to have this complication We know it could have been worse and I am grateful. 

I hope you are all doing well.

Robyn

[sgerrard]

Hi Robyn,

I am sorry to hear that Eric's nerve paralysis is deemed permanent now, but I am glad to hear that he is managing to cope with it. At least he can talk and eat, even if it requires extra care. I hope he is able to get on with his life most of the time.

I know this has been a stressful ordeal for you too. I hope you are now able to return to a reasonably normal life as well.

Best wishes to you both.

Steve

[Jim Scott]

Robyn ~

Thanks for your kind words for the members of this site. 

I'm so sorry to learn that Eric's 9th (?) cranial nerve function may not return.  That everything else has improved and Eric can live fairly normally most of the time is very encouraging news.  At age 20, your son is likely quite adaptable to the deficit he has to deal with.  Of course, with medical science inevitably progressing, there is a reasonable chance that this nerve loss may be medically reversible in the years to come.  Thanks for noting that this kind of functional nerve loss is extremely rare for patients undergoing AN surgery.

You've been a trouper and a source of inspiration for many caregivers during Eric's long AN journey.  Time to take a breather.  You've earned it.

Jim

[dmseibert]

I have the same trouble.  I joke with my grandson that I have to eat like him now.  It takes me forever to eat half a slice of pizza. I have only had my surgery a few months ago. (3-9-09) Hopefully everything will get better with time. I have only seen my neurosurgeon and a speech therapist. I have a checkup in August and he will refer me to an ENT. I just keep thinking that I can live with all this...I just thank the good Lord that I am here to watch my 10 month old grandson grow up...

[Janet]

Hi Robyn,

My husband's vocal cord has been paralyzed since he was 16 from a car accident. He fractured his trachea and had an emergency tracheotomy. He is now 57. His main challenge is that his raspy voice becomes tired because it take so much more effort to move the other vocal cord.  I knew him before and after and there was quite a change in his voice.  Even so, his voice is pleasing to listen to in a Clint Eastwood sort of way! He does not have any swallowing issues.

A doctor at the University of Washington does a procedure where they move the paralyzed tissue towards the middle so the other doesn't have to work as hard. (I hope I have this right.) My husband doesn't feel the need to do this, but it is nice to know some progress is being made to help those with paralyzed vocal cords.

I wanted to give you a little encouragement because I don't think this has ever held my husband back. He gets up and speaks in front of a crowd. He can carry a tune. He does avoid noisy restaurants because it is hard to talk over the noise.

Best wishes to you and Eric,
Janet

[msmaggie]

This news has to be discouraging!  I am hoping that advances are made in the medical community in the very near future to address this situation.  I had a few problems after my surgery due to the breathing tube, and it was frustrating and a little scary when I would choke.  My thoughts and good wishes are with you and your son.  It sounds like he has come along fairly well in spite of his paralysis.  Go Eric!

Priscilla

[Kaybo]

Robyn~
Although I do not have a paralyzed vocal cord - I had a LOT of trouble for many years after my surgery.  Finally, it has GREATLY decreased.  I find this a bit strange since Eric and I had the same surgeon and this does not seem to be too common...My husband still hardly lets me eat Angel Hair pasta - I got chocked on it really bad a couple of times!  Hopefully, it will improve to some extent over time for him.

K

[robynabc]

Hi,

Thanks for the replies.  Kaybo that it is very interesting that you and Eric did have the same surgeon.  But I was under the impression that the problem was the brain stem issue and that was more with the neurosurgeon.  I thought anyway. I may be wrong.  Eric is always on the lookout for others that have had this issue and hoping they got better.  So far the vocal cord is not a problem, it is the nerves.  Many things,  including some strange,  sets off his nerve issue.  Looking at a spider,  cold and hot food,  if a nerve somewhere else on his body gets hit he will have a spasm in his throat.  Nervousness will do it too.  I have to say I was not happy, really about how they told us there was no reason to believe it would not come back and then they announced that it is permanent.  I don't think they can say that absolutely.   Maybe they can,  I  don't know.  But, I do appreciate all your replies.  I am sorry you are dealing with so many affects from your surgery. 

If anyone has any other info to pass on to Eric,  I know he would appreciate it.

Robyn

[CROOKEDSMILE]

Hi.
My vocal cord and swallowing nerve was also paralyzed on the one side. I choke and cough alot at 2 years post op but am learning to deal with it. I was told by my speech therapist to turn my head to the weak side when I swallow as this will help the food to go down the right path with greater strength. As far as my voice...it disappears when I get tired and it is very raspy and "breathy" sounding as the therapist calls it. They said that I could have collagen injected into the paralyzed cord to "fatten" it which would allow for better closure of the two cords which would produce a louder, clear voice and reduce the coughing spells. They said the coughing spells were from the weak cord allowing liquids to spill over into the trachea instead of the esophagus and you tend to mouth breathe alot which makes the coughing spells worse. I tend to leave the dining room so that my family can eat in peace without having to listen to me cough throughout my entire meal. Sometime I cough and choke for no reason at all...........no food or drink involved at all. The collagen injection can be done while awake but it can be painful. Alot of doctors will put you under general anesthesia for this and be aware that it is not a permanent fix as most things aren't............it has to be repeated as the collagen wears off. It is injected directly into the vocal cord.  I am thinking about having it done but am giving my body and mind a rest since I just had eye surgery. I will go to Vanderbilt in August for my every 3 month botox injections for the facial paralysis/synkinesis and will talk to them about the procedure while I am there and will report back with any new information.
Angie/crookedsmile...........but glad to be smiling.