New patient

[Timjk]

My name is Tim. I am 52 years old and I live in St.Petersburg,Florida. I was recently diagnosed with NF Type 2. I have had sciatic nerve pain for the past few months, so I had a lumbar/sacral MRI done Nov. 15. It showed 3 large tumors on my spine. A second MRI done Dec. 15th on my brain,cervicle,thorasic showed bilatteral AN's. I have had tennitis and gradual hearing loss for 17 years. I wear bilatteral hearing aids. The size of the AN's are 12 MM  on the left side and 3.3 X 2.9 CM on the right side. The tumor on the right side is so large it is pushing against my brain. I have a first appointment at the Moffitt Center in Tampa on Jan. 8th. I have been in a wheelchair full time for the past 6 years due to what has been diagnosed as a form of Muscular Dystrophy,which from reading various information the past month, I now have serious doubts whether I actually do have M.D. or are my neurological problems due to the NF type 2.
 I am looking forward to being a part of this group. Any information you can share will be appreciated.

[Boppie]

Welcome,  You are in a place to get support and information from people who have experiences with AN's and some with NF2 also.  I am glad you are seeing doctors soon about the AN which is impacting your brain stem.  A few other posters here have been diagnosed with MS, only to find out they didn't have it.  Did you just recently learn of the presence of your AN's?

I am 65, and as you see from my profile I went the surgery route. 

Several posters have been to the doctors you are seeing.  If you use the search tool for your Doctors you will learn more.  Also, search NF2.  My prayers are with you.

[tony]

Yes - not a happy xmas so far for you - but there maybe some good news
It maybe that either the spine tumours or the larger skull tumour
is affecting your mobility and, or balance
(either of which could make it hard to walk)
It maybe as these are dealt with that your body will recover some of
its former mobility
Its early days here - but it is possible
The other diagnosis was fine given the info they had
- but I wonder if they would have stuck by it
 once they had the MRI scans....
Worth searching the group for NF2 info
also there is the "NF2 Crew" stateside- similar to this but all NFs
(and I know a few contacts there)
My other thoughts are the condition is quite rare
(1 in 40,000 ??) - its worth seeking out docs/surgical teams who have
experiance in the area
Note : post surgery you may need some assistance with rehabilitation
- to help with your mobility etc
(I was in a wheelchair for a month - but can now play 36 holes unaided)
I hope you have a better New Year
Best regards
Tony

[Obita]

Hi Tim:

Welcome.  I don't know very much about NF2 but I do want to wish you well.

I too have seen Moffit on here many times.  battyprincess was treated there for one.

Good luck and we will see you around the forum.  Kathy

ps:  How do they diagnoss MD?  I am glad your appt. is comming up soon.

 

[ppearl214]

Hi Tim and welcome.

I believe that a member here, battywench, had her treatment (surgery) at Moffitt...... will see if she logs on shortly.    She does not have NF2 but, her AN was life threatening and had her surgery at Moffitt (if memory serves me right) approx 1-1/2 yrs ago. It's a bit slow going for her but every day, she is making terrific strides in wellness *blows kiss to battywench! *

I know she can share her experiences re: Moffitt and I send you wishes and hugs and know that we are here for you.

I do also believe that a new forum section for NF2 may be added to this website/forum as there is talk of it. There are many NF2 patients here and we've noted the change needed here to the forum administrators... hoping they add it soon.

Wishes to you for 2007.... and may it be a good one for you.

Phyl

[Dealy]

Tim- Hi and welcome to ANA. I also am an NF2. I just finished a Spinal Scan in my hometown-thanks to this forum and Tony. I never was told about Spinal Tumors. Early indications seem to indicate my Spine is clear-but will not know it final meet with doctor on the 4th of January. Heck where I live in a small town in Kansas-you are lucky if you find a doctor who knows anything about AN's period-no less NF2. My story-if you have not read other posts yet. Had surgery for 1.5CM 18 years ago which left me deaf in left ear. Now have 2.4CM AN in right ear causing face to go numb. This was discovered in 2005 after my right side of my face went numb at work. Decided to opt for FSR at Johns Kopkins this past summer. 25 sessions over 5 weeks. Did this because of chance of saving hearing. Went from 96% to 90%. Just had my latest MRI the 26th of December. Tumor shows Less Enhancement and has been stable the last 9 months-and especially after FSR. Sounds too me are distorted and muffled but I can still hear. Surgery would of left me deaf-so that is why I opted for FSR. Figured if I am going deaf-I would rather go on my own terms instead of waking up deaf... Tim- I wish you all the best in your choices for what you decide too do. This disease is not easy to deal with Please keep us informed on how you come out with surgery etc. Thanks-Ron

[Battyp]

Funny Bruce usually you and I are in agreement but not this time  LOL  I say go to Moffitt.   

Could it be my treatment was there?  LOL  I actually consulted with Shands and if you have the time to wait for an appointment I'm sure they are just as good.  I know people who treated with Dr. Antonelli there and had a good outcome and Dr. Friedman when he was doing microsurgery and had a good outcome.  I just didn't have the two months to wait for an appointment.  I would definitely send a copy of my mri to either one of those guys.  I've just had such good treatment at Moffitt I can't complain.  Plus for Tim they are a lot closer )

Stay away from Miami  LOL 

[ixta]

HEy Tim welcome to the boards, I am not NF2 but had questions about it and a NF2-"Jeff" has been posting some answers to questions I had about it.
http://anausa.org/forum/index.php?action=profile;u=48 It looks like Ron above too has NF2.

there seems to be a strong NF2 Support group within this site but it confused me a bit when I came here primarily for unilateral AN issues, but got tangled with the NF2 crowd here educating me about the differences between regular AN and NF2.

Perhaps the forum leaders should include a separate area under useful information under the discussion form that is Titled specifically for NF2 themes, in order to target that populations' needs. I understand the "tumor pressing on the brain" issue due to my AN being large, but the only back problems I have had is sciatica and a chipped tailbone.

I wish you well and your not alone. I thought I was alone before coming to this board and it has been very helpful to me to know that there are "others" that have similar health probs.

[Obita]

Tim:

Good luck tomorrow......I'm sending some Luck 'o the Irish your way........

Kathy