Good News I think.

[robynabc]

Eric went to ENT today.  We were not happy with the other one so we went back to the one that originally diagnosed us.  I know I say us.  But of course it feels like us since I went through this whole thing with him.  LOL.

Anyway,  the ENT said she sees a little movement of the vocal cord.  Yaaay!   We also talked about this procedure that the other ENT has been pushing Eric to have.  It is a cologen injection.  Eric didn't want to do it because he will not be allowed to talk for 7 days and they say it is temporary.  (about two months)  Now they said it does not help with swallowing just voice.  We all discussed this and didn't think it was worth it.  He already struggles with his voice so to lose it does not seem worth it.  We said he might do it in December before he goes to college.  (He was deffered to January) She said she thinks the nerve will be back by then.  Loved hearing that.  No one else has been that positive.

Anyway,  I was wondering if anyone on this forum has a)  heard of this procedure or B) done the procedure. 

Thanks in advance.

Robyn

PS.  Just an update- Eric is doing great in every other way.  He is having his final MRI end of this month then both docs are going to see him and hopfully clear him for just about anything.  I could not have hoped for a better result.  If his vocal cord fixes itself then his only other complication is his SSD.  We are so lucky and we know that.  I hope this is okay to say this. Not boasting.   I just want pre surgery patients, especially with large tumors, to know that tumors of these size can have good results. 

[Jim Scott]

Hi, Roybn:

I'm not familiar with the collagen treatment you refer to but with the limitations it has and the reluctance Eric has about undergoing it, I can see why it was passed on, for now, anyway.  I would have a hard time not talking for a week - but my family might like the idea. 

I'm very glad that Eric has come through his AN experience so well.  No need to apologize for being grateful and pleased for your son's good outcome from a large AN tumor.  It would be odd if you didn't feel that way.  I also had a good outcome from a large AN and while I try not to boast about that, I'm certainly not shy about mentioning it because, , like you, Robyn, I hope to encourage pre-surgical AN patients.  I'm a 'mature' man and had a 4.5 cm AN.  Yet I came through surgery and radiation just fine with only a few very minor problems that I can easily deal with and that are likely temporary, anyway.  Of course I'm very happy about that. Who wouldn't be?

I trust that Eric's recovery will eventually be total as he continues his life and seeks to fulfill his dreams. Please keep us informed.

Jim

[robynabc]

Thanks so much Jim. 

I always appreciate your comments.  I will tell you that the swallowing stuff is so hard for him and me.  Yesterday he had a coughing attack and it freaks me out.  He always tells me that it sounds worse than it is but it really scares me.  Probably because I don't know what to do and if it is worse than I think. 

The new ENT is going to send him back to therapy.  I am disappointed that the other ENT only felt like the collogen thing was the only option.  I wonder if it is some new procedure that they really want to try.  Anyway,  Jim,  so glad to know you are doing so well.    and yes we are so relieved.  I will feel alot better when he can swallow and talk. When he can yell down the stairs again.  Can barely understand him on the phone.    Right now he stands at the top of the stairs and bangs on the wall to get our attention.  Can hear him around the house but we turn the tv down when he talks.

Here is something funny.  Saturday I kept hearing banging on the wall and thought it was Eric.  After going to the stairs about 3 times and not seeing him I was going to go upstairs and make sure he was okay.  Then I realized that the banging was coming from outside in the back.  I opened the door and looked at the side of the house and there was a HUGE woodpecker staring at me.  He was pecking at the siding.  The same thing happened later in the day and it was that woodpecker again.   It was pretty funny except that woodpecker is damaging my siding.  Kinda strange thing.

Also,  here is a tip you guys might be able to use.  When Eric got home from the hospital he didn't have much of a voice but I didn't want him to be alone while sleeping so I came up with the idea of a baby monitor.  It was great for that first week when he came home.  We just told him to call us in the monitor and I could hear if he was having any problems.  He also had a phone that he could page us with.  I don't know if anyone else may need to use it but it worked great because I could do things while he was sleeping.   Okay am done.  LOL.

Robyn

[satman]

I am saying a prayer for Eric right now.
i hope the little movement becomes back to
normal function.

[chelsmom]

Hi Robyn,

I hope you got my personal message over the weekend.  I know how scary it is when the chocking happens.  Chelsea was in the hospital for a majority of the time thatshe couldn't swallow (3 months) and she was hooked up to a suction machine that she eventually could do herself.  It was difficult when she had to go down for the constant CT scans and MRI's as she had to lie flat and they would have to bring her out of the machine every few minutes to suction her so she wouldn't choke.  She also had a tracheotomy at the time so the whole thing was scary.  After she came home she had to sleep at a 45 degree angle with her head up to avoid chocking.  I slept next to her for a very long time because like with Eric, without a voice I was afarid I wouldn't hear her if she needed help.

As far as the collegen injection goes I have heard of this.  That is what they were going to do to Chels originally but felt that she would benifit with a vocal cord surgery that would help both her voice and swallowing.  What they did was move the paralysed right vocal cord to the mid-line so that the left cord would meet up with it, thereby creating the voice.  Even with the surgery, she didn't eat by mouth for another 2 months and her voice was weak to non-existant for at least 6-7 months.  But like I said in the e-mail,  there is no way you can shut her up or limit her eating now.  (LOL)  She still has coughing fits once in awhile and her doc said this is to be expected because of the paralysis, but not to worry.  This Doctor is a head and neck surgeon at UCLA not an ENT.  He had told us when he did the surgery that it would take a year for her to fully gain her voice back to the point that only we might be able to hear a possible difference but we don't.  She sounds like she always did.

I hope Eric's swallowing and voice returns soon.  You might want to get another opinion, possibly from a head and neck surgeon to make sure he doesn't pass that window of opportunity I was telling you about.

With all my best,   Michelle

[robynabc]

HI,

Just some news.  Eric went in for 3 month MRI,  Looks good.  Eric is their star patient but they also said since Eric's surgery 3 other young people with very large tumors have had surgery with this same team and all of them have good facial results.  They did say that Eric's was the best they have ever seen with this large of a tumor.  This shows what a great doctors we have.  But they also said that Eric's paralized vocal cord was the only one they have ever had.  Dr. Jenkins has been doing this for 25 years and not once has he had this complication.  I am a tad worried that no one around here has experience with it.  I sure hope it just comes back. 

They said Eric will be having MRI's for the rest of his life.  He is so funny,  he slept thru the MRI.  I guess he doesn't have caustrophobia.  I could never do that. 

One worry,  they said there is no way to test for NF2. I remember the ANA people I talked to said there is a test for it.  Am I wrong?  The doctors said the only way you know is if it comes back.  Does anyone here know?

Anyway,  thanks again for all the help and information.  Hooray for now. I am so blessed.

Robyn

Oh and GO COLORADO ROCKIES!!   Eric had to defer his scholarship to Denver University until January. He is taking sports management and is a sports nut.  Poor kid has been a Rockies fan his whole life.  We are really hoping for the Rockies to win for him and us!!  LOL

[robynabc]

Oh and Michele hope you got my personal reply to your message.  I really appreciate your help.  I hate that choking thing.  I am really glad that Chealsea is doing so well.

Robyn

[chelsmom]

Hi Robyn,

How's Eric's voice coming along?  I did get your personal message and I though I wrote back but I might be losing my mind.  I'll check and see if I sent it.    Michelle

[robynabc]

Hi Michelle,

Voice is the same.  Swallowing is better but the vocal cord is moving a little they think. 

We are just waiting it out.

Robyn