We all have challenges in our life, no matter how big they are.
I have already gone through a time in my life when I dealt with a major challenge. A brain tumor nearly took my life, but it did take my vision.
I was only 13 when this happened. It was very hard to adjust to blindness since I was just hitting my teen yearsz and was looking forward to driving and doing other things a normal teen does.
Nearly a decade later, I am now losing hearing as well. Each day that passes, I think it is going to be my last hearing day.
Now I am faced with a major delema. Do I keep natural hearing as long as possible? Or do I get the tumor removed now and go completely deaf?
If I leave it in, it could possibly do too much damage and destroy my last chance for an ABI. If I take it out, even thought I would be completely terrified, I would have better chances for a successful implantation of the ABI since so far things haven’t been destroyed completely.
What to do? I don’t know. Edward doesn’t know. It’s such a hard decision to make.
Part of me wants to do it now for theimplant later. And part of me is too scared to lose hearing completely, even though I know that is what will happen in the long run.
Also I don’t know how well the ABI would work for me. Right now I can hear Isaiah say, “momma”. With the ABI I’m not sure if I’d ever be able to.
Do I hang on to my hearing as long as possible so that I can hear that precious voice say that word? Or takethe tumor out, getthe ABI, and hope for the best? What would you do if you were in this situation?
by Yvonne Foong, on 07.30.09 @ 11:18 am
I would getit out now and start learning to live as a deafblind person right away. But that’sme. I like to take on challenges sooner than later because I know that if I put it off, I will need to face it anyway. S better deal with it now and get over it.
I wanted to keep my hearing too. But I had to accept the fact that there was no definite way of keeping the hearing. Even radiation and drug therapies are ambiguous. So once the hearing went to a stage when it was no longer useful, I decided that I would get the ABI. It was a challenge to me.I am going to be the FIRST Malaysian to have an ABI! How special is that?
So if I have to become a deafblind,Id be the FIRST deafblind person to complete postgraduate studies!
That’s how I’ve been living.
by Yvonne Foong, on 07.30.09 @ 11:20 am
What I mean to say is, you should be brave and take on the challenges God allow you to experience.
by Sarah, on 07.30.09 @ 11:34 pm
Holly,
I don’t want to tell you what to do, because knowing when you’re ready is a personal decision only you can make.
But I would like to tell you about a similar dilemma I faced when I was in the midst of losing my sight. I knew I was losing it, but I didn’t know why. I was going to a doctor at the time who was saying that it had something to do with scar tissue forming on my retina, and though he didn’t know exactly what was causing it, I was losing my sight, and it would continue to progress until I no longer had any. (I had been blind in my left eye since birth, so my right one was the only sight I had.) He said he didn’t know if it would take 2 months or 6 months or a year, but I would lose it. He said that he could try to do surgery to remove the scar tissue that he thought was the culpret, but he said that due to the weakened state of my eye from the many surgeries I had had over the years, he was very concerned that the trauma of the surgery would just cause my eye to essentially collapse and I would lose my vision instantly. And, the way he explained it, he said he would rather have his sight for a little longer than take that big risk of losing it right then.
I was not convinced at the time, and wanted the surgery, to try to do “something.” I told my parents about this, and they had been swayed by the doctor’s comments. So basically they talked me out of it and I didn’t push the issue.
But you know what? I lost my vision anyway in less than a month. And after it was gone, it was gone. At that point I would’ve been better off had I had a surgery and at least tried to save it while I could. And I actually had a good bit of useful vision at the time I was being told that by the doctor– I could still read print and walk around by myself, just had an expanding cloud in my field of vision — so if the surgery had failed, I did have a lot to lose. But The way I looked at it, and would look at it in your situation, the time will come anyway when you have lost it. At that time, will it have mattered if you hung onto it for a few extra months, or even a couple of years. Or is it worth risking that short period to have a chance of saving it. For me, I can say with absolute certainty, I wish I would’ve had the surgery, and if I had it to do over, I would in a heartbeat.
by Sarah Gorden, on 07.31.09 @ 1:08 am
Holly, I am so sorry you are in this situation. How scary that must be for you.
I really just can’t imagine.
If it were me, I would be nearly demanding to try Avastin. I know it’s easier said than done, but if anyone deserves to have a shot at such a promising drug therapy, it’s you. Considering it has restored hearing for some with NF2, I really hope you can find a way to get on it and give it a shot.
Aside from that, I would keep your natural hearing for as long as you possibly can without risking your life. If the tumor is growing a lot, obviously you will likely have to take action. I do hope you can try Avastin before you go with the surgery route though, because there is no turning back once the nerve is cut.
As far as hearing Isaiah say “momma”, with the ABI you may or may not. I do quite well with mine for the most part, but I use lip reading in combination, which you obviously would not have. There is really no predicting how well you will do with your ABI, but chances are the natural hearing you have left is better than what you with achieve with the ABI and no lip reading. It’s a very tough call though, and again I am so sorry you’re having to make this difficult decision. I bet you are very nervous for your MRI and neuro appointment to see where things are at. Make sure to ask about Avastin, maybe print off some of the news articles on it and give to him… Hugs. Thinking of you!
by Yvonne Foong, on 07.31.09 @ 12:32 pm
Holly, there used to be a boy at HEI who is deafblind too. I read about him in one of the research reports. They described him to be more motivated than others to improve with his ABI since he could not see either. They said he is doing especially well.
Why don’t you email Steve Otto about him? We can only guess what it is going to be like for a deafblind to live with the ABI so why not get to know people who already are doing it?
by hollyalonzo, on 07.31.09 @ 4:02 pm
Yes I would have liked to have taken care of it sooner. Kids adjust more easily. But, stupidly, I trusted my neurosurgeons word and he said to wait until it got too big to live and then he would remove it. At that time it was only a few millimeters big. I think of being brave and just doing it, but then I think of what Sarah G mentioned. There are lots of drug trials and other research that is close to stopping or shrinking the tumor and restoring hearing. Like she said, once it’s cut there is nothing that can be done. I know unless they can regrow the optic nerve, I’ll never get sight back, because a nerve was cut. But maybe if I wait long enough there will be hope with the drug trials?
I emailed a lady in Boston about getting on the trial for ptc299 that they are starting, but I haven’t heard anything back. Cross your fingers.
I did email Steve about the deafblind guy. He said he would pass along my info and leave it up to them if they wanted to contact me. I never heard anything back. So who knows? I feel I would be determined to hear as much as possible, but I know it also depends on the surgeon if they got a good implantation. There are just lots of factors. That is why it’s such a hard decision.
by Yvonne Foong, on 08.01.09 @ 3:22 am
Hi Holly. Given your situation, you have a lot to gamble with. You have a child to care for and a husband to share a life with everyday. I don’t know what could the side effects from these drugs could be. But if they fail and your tumor grows too large,your life is at risk. If you lose your life,Isaiah will have to grow up in a single paremt famoly.
The mewly released drug therapies look like they are promising from what he press chooses to report. They are ambitious projects meant for trial participants whose only job is to maintain their own lives. Maybe the paticipants do not have tumors that are presently life threatening. But you do. You have Isaiah.
SpeWhen you have to live in total blindness and deafness, the consequences involve learning to adapt. It will be an uphill struggle, certainly. But everyday, there is hope for improvement.
On the other hand, if the drug therapies don’t work and your tumor grows to put your life in extreme risks, every bit of hope will be drained.
by hollyalonzo, on 08.01.09 @ 7:24 am
Hi Yvonne, I’ve thought of all of that. I have an MRI on the 12 of this month, and yes I am nervous to see what it will say. If the tumor has grown a lot and is the reason for such a drastic hearing loss, then I’ll have to take it out soon.
I think the tumor is already life threatening because I remember Dr. Friedman saying something about balance, and it has gotten terrible for me. So much so that I am using a wheelchair most of the time because I’m tired of falling. In fact, I fell again this morning going from my bed to my wheelchair.
So I don’t think there is time for a trial, but I wanted to explore all options. Also, I do remember the r esults of avistan saying that one girl regained a lot of hearing, but others tumors continued to grow, grow rapidly, or started growing again aftger the med was stopped. I can’t afford for it to grow more rapidly especially since I’m not exactly sure how big it is anymore. A year and a half ago it was 3cm. Cross your fingers that it’s not like gigantic now.
by Kenneth Tuck, on 08.06.09 @ 5:56 pm
Hello Holly. I have been listening to the blind double trouble podcast for about a year and a half. I was so happy when I saw a new episode of the podcast had been posted. I wish you strength happiness and success with whatever need be done. Say hello to Edward
by Lynne Swarbrick, on 08.09.09 @ 1:51 pm
Hi Holly, I’m am Lynne Swarbrick, I have Nf2, I was diagnosed when I was 26 almost 25 years ago I had My right AN removed and that left me completely deaf on the right side but I had good hearing on the left side.
It was planned for the left AN to be removed 6 months later but because the first operation left me with a facial palsy my surgeons decided to leave the tumour and watch and wait, I did eventually lose the hearing in my right ear and the tumours as grown over the years but I had many years of hearing and I am so glad for that.
My advice would be to watch and wait as long as possible keep your natural hearing. and have The ABI when and if you need it. Good luck and there are drugs soon to be of benefit to people with Nf2. I have heard that they have shrunk tumours and even restored some hearing in some cases.
I am having my right AN removed on the 24th of August after the Operation I will be having an ABI implanted I’ve been informed that it will sound robotic and not like the hearing I was used to but it will be better than hearing nothing and give me some life in my silent world.
I would def have the ABI in the future if I was you but wait a while and hang on to the hearing you have left.