A few questions....

[Melissa778]

I am now almost 5 weeks post op, back to work and feelign wonderful.  However, I have the looming doom of having to go through Gamma Knife this fall to zap the remainder of my AN....my question is what are the side effects from Gamma Knife?  I'm a bit nervous about it......

I have to wait until after my GK to get my BAHA.....but in the interim, I really dont' mind the SSD....wonderign if the BAHA is worth it?  My insurance is covering it and my family seems to think I should jump at that and have it done while I have the insurance covering it and maybe jsut not wear the processor if I dont' feel like it.  I ralyl have nto been bothered by the SSD....is it worth it to have the BAHA?

Melissa

[Kaybo]

Melissa~
I don't have a BAHA or anything and I do OK...but those that do REALLY like it.  Gee, that really helped you didn't it??  I have lived almost 13 years without anything and don't think I have really missed out at all, but I didn't know about it until this year so I really don't know what I would've have done if I could have had it all along...

K

[Jim Scott]

Melissa:

Glad to learn you're doing so well, so quickly.  I love AN success stories!

The BAHA issue is a very personal decision.  Just because your insurance covers it doesn't mean you have to get it.  I've been SSD since well before my surgery and cope rather well, I think.  Besides, the BAHA isn't a panacea for the SSD, but it obviously alleviates the problem, somewhat.  Is it 'worth it'?  Not to me, but I realize and respect the fact that it is to many others.  Again, your call.  However, I wouldn't allow family and/or friends to 'talk' you into getting a BAHA if you really don't feel you need it.

I also had surgery then radiation to kill the AN.  It went well, but I had FSR, so I can't offer an opinion on the GK treatment.  However, I can say that the FSR treatments were uneventful and I had no negative side-effects from the radiation except for the third eye that I grew (kidding!)

Here's hoping your rapid recovery continues and the GK is successful and without any complications, as I trust it will be.

Jim

[leapyrtwins]

Melissa -

I'm so glad you posted    I was thinking about you last night and wondering how your recovery was going.

As for the BAHA - it's a lot like the original AN treatment - a personal choice.  I personally love it, but that doesn't mean it's for everyone.  The same goes for the Transear - lots of people who have it love it - but it's your decision.

The fact that your insurance company covers it is wonderful, but as Jim said, that doesn't mean you have to get it.

I'd say, get through the GK, give yourself a little more time to experience being SSD, and then if you think you might be interested, try the BAHA demo.

Jan

PS - Jim, make sure you cover that third eye in the sun    I think all the humor on this forum is starting to grow on you 

[LADavid]

Hey Melissa
Good to see you back on and glad to hear that things are going well.

First, I've been SSD for 23 years.  It created problems with work at a conference room table and with exes who told be things that I didn't hear.  Other than that I adapted to turning my head to hear.  I am now looking into a CROS.

Next, as far as GK surgery -- haven't been there -- wish my surgeons had thought of that -- but I came across a survey yesterday when I was doing some writing research.  It gives the downsides of types of surgeries.  I'm going to post this again someplace else but here are the results.
http://www.dinagoldin.com/anarchive/life.htm
I am a bit curious as to why my surgeons didn't share this data with me.  But it may help you with your future decisions.

Best wishes and keep us updated
David

[cmp]

Melissa--

Nice to hear from you, and so glad your recovery's gone so well!

I can't comment on the BAHA, but just wanted to mention that I "test drove" a CROS aid for a couple of weeks after my surgery eons ago--it didn't suit me (I opted instead for a traditional, very high amplification, behind-the-ear aid in my non-AN ear, which unfortunately has been impaired since childhood). I did have to pay for the custom ear molds they make for the CROS (cost was about $50 in the early 90s), but I was allowed to return the CROS for the rest of my money back. Maybe you can find a similar arrangement by you, and maybe your insurance will even provide some help with the expense?

Carrie

[Tumbleweed]

Hi, Melissa:

I haven't had GK but can summarize what I've heard people on this forum say about its side effects. (Everyone on this forum: please correct me if I am wrong about any of this.)

Some people sail right through the procedure with no apparent side effects. For those who do suffer side effects, these may include one or more of the following: vertigo, disequilibrium, double vision, nausea, headache, fatigue and hearing loss. I've never heard of anyone getting all of these side effects at once. Fatigue is the most common side effect immediately after treatment but, again, many people don't even suffer that after treatment. The more debilitating side effects (vertigo, etc) occur if the tumor swells from being irradiated; swelling-related symptoms typically happen 3 to 18 months post-GK (if they happen at all). Some of the symptoms, such as double vision, typically last only a few minutes or hours. Most people report that the other symptoms—except for hearing loss—reverse themselves significantly (some symptoms disappear completely) after several months to a year of feeling ill.

I understand what you're going through. I'm scheduled for CK in just over two weeks and am going through alternating periods of acceptance and dread. What has helped me to cope is thinking about what the alternative (foregoing treatment) would mean. Whatever negative effects I suffer from CK (hopefully there will be none), they will be less than what the tumor would do to me if left untreated. I am beginning to mentally embrace CK. But it's difficult.

Best wishes,
Tumbleweed