ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Goldie on August 09, 2009, 12:22:17 pm
-
Just wanted to introduce myself to the forum, as I expect I will be looking to you more in the months to come! I recently discovered this forum and think it's time to join in. I'm excited to be attending the ANA Conference next weekend for the first time and am looking forward to actually meeting some other AN people!
I had gamma knife surgery in 3/06 for a "small" AN and, although I lost most of my hearing on the right following the procedure, I've done well otherwise until this past February when I started having facial spasms (we're not talking twitching here) and change in taste. A repeat MRI showed that the tumor had started to grow again. I'll have another MRI in September and if it is still growing, I will likely have translab surgery. I have an excellent neurosurgeon (AN specialist) at Mayo Clinic, where I also work. I'm now on Neurontin which is helping the spasms. My thought is if the tumor stabilizes and I can control my symptoms with medication, I will not have the surgery. My main fear is the facial paralysis, especially since I know it's already affecting my facial nerve.
So I'm an "oldie" because I've been walking this road a while (somewhat crookedly at times--another issue!), but a "newbie" to this site and possibly surgery. Thanks for all the sharing that you're all taking part in!
Denise
-
Hi Denise and WELCOME! I am an oldie too - I had surgery 13.5 years ago but only found this site about 1.5 years ago - of course, there was no such thing when I first started out! LOL! I stick around in hopes that I can help someone else out...I will be in Chicago and hope to meet you in person!!
K ;D
-
Denise, I go to Univ of Iowa and have NF2 so more than one surgery. One was for a facial neuroma and we knew ahead it probably was so when the nerve did have to be severed,then my surgeon took some nerve from by the ear and grafted in at the same time. I do not have complete movement but some improvement. This might be something that your dr could be asked about anyway. Having had radiation might make the situitation different. Mine was translab though. I pass this along as might be of some help to someone sometime. Cheryl R
-
Hi, and welcome, Denise!
I like your self-designation as an 'oldie-newbie' which is a very accurate description for someone in your position. However, I'm sorry your AN decided to resurrect itself. Please feel free to visit whenever you wish and of course, to ask whatever questions you may have. We're always 'open' and willing to help as best we can. :)
Jim
-
Welcome Denise
To our forum, I have not had treatment yet, still W&W for a small AN with my next MRI due in Feb of 2010. I was dx March of 08. Let us know how you are progressing and if you need surgery. This forum is a great place to gain some wonderful knowledge of the world of AN's.
Best wishes,
LisaP ;D
-
Denise .....
Welcome to this Forum. Sorry your AN is rearing its ugly head again! Hopefully it will stop growing or you can have it removed and get on with more fun things in your life.
There are about a dozen or so of us currently active on this Forum who will be at the Symposium this week ..... looking forward to meeting you!
Clarice
-
Thanks very much to all for the welcome!
I appreciate your comments about the nerve, Cheryl. That's something I hadn't considered and I will ask about it if we go the surgical route.
Although this journey hasn't been especially easy, I count the blessings in my life which are many. I wish all of you a blessed day as well.
Denise
-
My thought is if the tumor stabilizes and I can control my symptoms with medication, I will not have the surgery.
I vote for this option. Are we taking a vote? :)
I hope it all works out well in the end, and look forward to meeting you in Chicago.
Steve
-
Hi Denise,
I'm glad you found me at the symposium, however brief our talk. It is always nice to meet forum members!
If you caught Dr. Kondziolka speaking about GK, he said that you should wait at least 3 years, maybe more like 5, before deciding that the AN is really growing again. He seems to have seen some slow-to-die ones that do eventually give up the ghost. So I'm hoping you can just let it be.
Steve
-
Denise -
just wanted to say hi. I don't recall meeting you at the symposium, but I wish I had.
Jan
-
I sat with Denise at lunch Sat as never realized they had a forum table so sat at the midwest one and met her. The wonderful memory issues. We never got a pic of Samantha either. She was at the Fri eve facial session with her daughter but the roar of the crowd gave her a headache so left. I saw her in passing off and on.
I did not get the forum name of a couple who's 17 yr old son is a new NF2. Has the ANs,many spinal tumors and 2 menigomas. Think they just joined. Cheryl R
-
Hi Denise and a big welcome to the forum....
JO
-
Just wanted to send on a little update. It looks like surgery is in my future, translab October 1 to be exact. After my recheck this week, I am now officially a gamma knife failure as my tumor has continued to grow (it's borderline small/medium). My neurosurgeon at Mayo explained the surgery will just get more complicated the more the tumor grows. It was larger at my last 6-month visit, but he gave it an extra six months in hopes that it would stabilize.
Losing my hearing on the right is not much of an issue for me at this point--it's pretty much already gone--and my brain seems to have compensated for my imbalance over the years. Whether they can save my facial nerve is the big question mark, but we are hoping to save it. It's "100%" I will have either temporary or permanent facial paralysis on the right, but I know things can be done down the road to help.
This is not what we wanted to hear, but I feel confident in my care. I'm just unlucky to be in that 7% of gamma knife failures. While I'm still searching for what good can come out of all this, my faith is strong, I'm hanging in there, and I refuse to wallow (my new motto ;))! I'm so thankful I attended the conference this year. I knew what questions to ask of my surgeon and learned so much at the conference. Not all of it good, but that's the reality of it. I told my husband about the caregivers section here and hopefully he'll use that as he needs to. He's been a great support, and every little bit helps!
Denise
-
Denise ~
I'm so sorry to learn that the Gamma Knife treatment failed to halt your ANs growth and that (Translab) surgery is now inevitable. You seem to have a good grip on the situation and I admire your determination to maintain a positive outlook, while remaining realistic about possible post-op complications. This mature attitude will serve you well. Your husband's support will also be extremely helpful. Of course, for what it's worth, you definitely have the full support of all of the 'AN folks' that post on the forums, including me. All things considered, I think you'll get through this O.K.
Jim
P.S. I added your surgery date to our famed 'AN TreatmentCalendar' http://my.calendars.net/an_treatments/d01/10/2009?authenticate=&display=M&style=B (http://my.calendars.net/an_treatments/d01/10/2009?authenticate=&display=M&style=B)
-
Thanks for the encouragement, Jim, and for adding me to the calendar. I thought of that as I was lying in bed last night, so you beat me to it! I will keep in touch.
Denise
-
I'm sorry to hear that you have to go with Plan B, Denise. Oh well. I will mention that in some cases of post-radiation surgery, the surgeons can leave a bit of dead tumor on the facial nerve, reducing the risk of anything facial happening. Sort of like debulking and then radiation, only in reverse order. Must be optimistic until you know otherwise.
Best wishes in advance for your upcoming surgery.
Steve