My Journey

[Doulos]

I had surgery on September 22, 2011. Never though I would be in this boat. I'm 27 and married to a very supportive woman. We have a 2 year old boy and a girl due in 2 and half weeks. I started out in January having some hearing loss in my right ear and a nagging cough. My PCP had no idea what it was and attributed it to allergies and sent me to an allergist. She also had me take a couple of chest x-rays. Finally 9 months later I decided to see and ENT. They did a hearing test and found I had word recognition hearing loss. He also scoped my throat and found my right vocal cord was paralyzed. So he sent me for an MRI. He found a large AN and was surprised I didn't have symptoms before this. Well I got it removed (mostly) in September. I tell people its ironic that I seemed completely healthy before and <even> with all the side effects of surgery that I am actually healthier now. I don't look or feel healthier, but I know I am. Anyways, that's how I got into the club. My recovery seems longer than most I've read on here. I'm about 8 weeks out and don't know when I'll be back to work. I have diplopia and speech and swallowing problems, not to mention some of this tumor left that really needs to go! Over all I can say that God is good no matter what happens and hope to be a great witness for Him in this (almost) bigger than life sized trial!

ETA <even> for clarification

[Tod]

Welcome to the Forum! It is amazing how these things work out. At eight weeks post I was still struggling with a number of things, but I did it make it back to work at three months post. However, it was still well over a year before I felt really good.

I sympathize with your cough. At 21 months I still have one. In my case it is a result of also having lost the autonomic swallowing processes that allow the normal mucous secretions to work their way down to protect the throat. It has improved a lot, but I still have it.

My vocal cord paralysis was post-surgery as a result of the nerve trauma from the surgery and being intubated for six days post-surgery (plus my surgery was very long - 32 hours). For most things my voice is almost normal now, although I cannot sing or shout. Just in the last six weeks there has been noticeable improvement.

The docs left behind about 10% of my tumor. Now that is growing again and the surgeons do not want to back in, we have a plan for radiation.  Have your docs discussed radiation as a possibility for the remainder of your tumor?

While I am sorry you had to find us, I am glad you did. You are in a good place here.

Tod

[Heresrose]

Doulos,

Can you expand on how you feel healthier. My surgery is coming up shortly and i'm curious how I'll feel healthwise down the road.

Thanks,

Rose

[Doulos]

Heresrose- Sorry for the confusion, I edited the post for clarification. I ment that after surgery I am healthier since I no longer have this thing severely pushing on my brain stem.
As far as for your surgery, I would say what you've probably read on here a hundred times, everyone's surgery and recovery is different. For me, waking up from surgery was pretty scary and the worst part. Though I was only in ICU all of 12 hours because the surgery went so well. But since then I have been continuously getting better. Just remember how for you have come (during recovery) not how far you have to go. I have been looking around on this site (extensively as i have nothing but time) and I wish I had known all this. Though it would not have made a difference in what I would have done I just like to know as much as I can. So I guess what I am saying is ask, ask, ask. It doesn't hurt being over informed.

[CHD63]

Hi Doulos and welcome to this forum .....

You have a wonderful attitude and that alone will serve you well.  I am sure there are days when you are "down" and that is OK ..... this is an up and down recovery.  I was so discouraged at several points along the way, but if you look at how far you have come, not how far you want to go, it speeds up the recovery process.

..... and a new baby soon!  Congratulations.  Let us know when the little one arrives!

Many thoughts and prayers.

Clarice

[Doulos]

Tod- Wow, from what I see on this forum you had blue ribbon winner of tumors. Though I don't think winner is the right word in this case. They did talk about radion for the rest, but I'm uncertain about that. I know that radion is supposed to kill it off but I would really like it to be gone. Anyways I'm waiting on the next step.

Clarice- I try to have a good attitude about it. I realized before and after the surgery that God is in control. I don't have to know why this happened, all I need to know is that He is good. I do have down days too. But I have plenty to be thankful for. I can't wait to meet my baby girl when she is born. I'll keep you all posted.

[james e]

Sorry you are part of the club. Attitude is the key to your recovery, and acceptance that this is one of life's burdens is key to your good mental health. Eight weeks might have covered up the incision on your scalp, but you are not fully recovered yet. Your brain is still learning to deal with the loss of your hearing, balance and facial nerve damage. Just hang in there.

I found out that the surgery removed my tumor, but it left behind some new "issues" and I have spent 20 months learning to deal with those. My life is not as good as it was 5 years ago, but I accept the differences, and my life is full of happiness and life is great.

James

[Doulos]

I am pretty fortunate in my post surgery symptoms. I had hearing loss before the surgery but it was not made worse by surgery. I can hear a good amount, it's just kind of weird having the phone to that ear. As far as balance, I think my balance is ok, I haven't noticed any major problems there. Also no problems with facial nerves. However I do have a paralyzed vocal cord and double vision. It also makes my head hurt and makes me light headed when I get up from sitting or kneeling or whatever. Mine was pressing on the brain stem so bad that they were concerned about paralysis and eventually death. I saw the MRI showing that part and I was shocked because I didn't feel that bad symptom wise. So this is by far the better bet. I do keep my hair very short so my scar will always be visible and thats ok. It is a rather large scar though as it is where my spine from about c7 to the center vertically then over to the center of my ear and down some. With all that I am very fortunate to be doing this good. Anyways I'm glad you have a good attitude about it all and thanks for the reply.

[Mickey]

Your a brave young man with a whole life ahead of you. Please stay focused on what you have to do and time will heal all wounds. My thoughts and prayers are with you. Best wishes, Mickey