I'm a Survivor!

[Jess Toews]

In early October an MRI showed a 4cm AN on my left side and a smaller one on the right. This was the first I'd ever even heard of NF. The tumor (Bertha) was pressing on my brain stem and needed removed asap. I was referred to House Ear Clinic and with the financial support of my friends, family, and community, I flew to LA and had translab surgery on November 18th. I have since returned home and will return to work on Monday morning. I am slowing learning to get used to one sided hearing. I just found this discussion board and am interested in meeting new friends who have NF.

[Kaybo]

Hi and Welcome!  Glad you got Bertha taken care of!  Feel free to make yourself at home here!

K   

[newmommyLA]

Congrats on a successful surgery for such a big AN!  You were smart to have Dr Brackman take care of you and it sounds like your recovery is going well.  I don't have NF myself, but I know there are a few on this site who do and they will be very willing to share their experiences with you.  I'm glad to hear your ear doesn't stick out anymore (other thread) and I'm sure the itching will go away.  It's probably just your hair growing back.  I can only imagine how hard it is knowing there is another one in there even if it is a small one.  Hopefully you'll be able to save the hearing in one ear.  Many of us recently became SSD and it is quite an adjustment.  I also have bothersome tinnitus so the deaf, yet noisy side is going to take a while to get used to for me.  I hope you aren't suffering from many other side effects.  What a wonderful thing to have so much support from your family, friends, and community!  Welcome to another community that will be there for you with experience, advice and compassion.

Amy

[leapyrtwins]

Hi, Jess -

we have many forumites who are NF2 - Cheryl R, Tony, and Raven come to mind, but I know there are several others.

I'm glad you are recovering well enough to go back to work - take it easy for the first couple of weeks; don't overdo it.

Best,

Jan

[epc1970]

Bye Bye Bertha and Welcome Jess! Keep us posted on how you are doing.
Erin

[michelle d.]

Hi Jess   I, too, am a newbie--had surgery for AN just a week before you!(Nov. 13th)  Sounds like you're doing great--I feel pretty good, too....I don't have hearing anymore on that side but I'm just so thankful that the tumor is gone.  Hope you contniue to get stronger every day....stay in touch, I'd love to hear your "story" of what led you to discover your "bertha". I bet most of us have pretty interesting stories. Take care---Prayers,  michelle d.

[CHD63]

Jess ....

You are indeed a survivor!!  Welcome to this forum of caring, "been there done that" group of people.  Although not NF2, I have had skull-based surgeries on both sides so can relate somewhat.

Let us know how you are doing.

Thoughts and prayers.

Clarice

[Cheryl R]

You are lucky to have went to House as they have more knowledge of how to care for NF2 than many drs.     I also have NF2 and have a dr at Univ of Iowa who has some expertise with it.         The House drs talk at the AN symposiums held every other year so I have been able to know them too and hear their info.       I have now had 3 tumors and surgery on all. I am an older adult onset type and very lucky how I have fared even some changes in my life.       2 tumors were ANs and one was a facial neuroma with a nerve graft done at the same time.   So did have some movement of the face come back.           I also was unusual in having some hearing return with my last surgery and no cochlear implant needed for now.    Hopefully not in the future either!               Deciding the best treatment for the tumors in an NF2er can be difficult so there is the best outcome and try to save hearing when possible.                   I wish you well in what the future holds for you and a continued good recovery.
                                                    Cheryl R
                                           

[Jeff]

Hi,
I am sorry to read of your diagnosis, but happy to read that your surgery went well. My brother sees Dr. B and likes him. I am managed by Dr. Friedman, whom I like very well. I have had 3 surgeries there and think that the people there are nice.

Did you get an ABI as part of your surgery?

Please let me know if I can do anything to help you.

Best wishes,

Jeff

[Jess Toews]

I was scheduled for an ABI, but my insurance wouldn't approve it. So I am just relying on my hearing on the right side. The insurance company says when I am completely deaf, they will pay for the ABI, but not until then.

I still get really tired after being up for about 4 or 5 hours. Is this normal?

[CHD63]

Unfortunately fatigue is one of the things we all share in common.  Immediately post-op and for several months following are the worst ..... it gradually gets better, but I still have frequent attacks of sudden fatigue and have to sit down or stretch out for a few minutes and then I'm good to go.

Clarice

[Raven]

Hi Jess,

Glad to see you are doing well. I'm curious as to if your Dr. has discussed a plan for the other AN. After going back to work full time after my surgeries, I would hit the sofa for a nap as soon as I got home. I'm back to full strength now, no more naps, you will get stronger. NF2 is not fun, but most of us NF2ers on this forum seem to be doing pretty good.

John

[Jim Scott]

Hello, Jess ~

I'm sorry I seem to have missed your original post but I'm pleased to learn that your recovery is coming right along.  I'm not an NF2 patient but I wanted to extend my welcome to you and express my hope that  your return to work is successful and that as you continue to recover and deal with any NF2 issues that may arise, you'll want to remain a part of our community.

Jim