I don't know.  I think I have nf 1 because the tumors grow under the skin.  But it mentions things about ringing in the ear as being nf2 and I have had that too, but didn't know it was related.  Definitely have NF1.  I was never told which one I have though, just always knew I had them.  I thought the difference between nf1 and nf2 was weather they grew on the outside of the skin like my mom's or if they grow under the skin like mine.  My mom's are on the outside and completely noticeable, but mine however are under the skin and no one would know that I have nf unless I told them.

I am not sure what my sister has.  I think my mom has both.

~Kristy~

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To: neurofibromatosis2@yahoogroups.com
From: ttg1964@gmail.com
Date: Sun, 3 May 2009 13:59:22 -0400

Subject: Re: [Neurofibromatosis] back pain anyone?

Kristy-

 

Do you have NF1 or 2?

 

Tracy

On Sat, May 2, 2009 at 11:15 PM, Kristy Wilday <babbling-brook@live.com> wrote:

No, I don't believe tumors increase in size as you get older, but that doesn't mean that there can't be tumors that do increase in size over several years.  If you have a fairly tumor than it most likely increased in size because I don't think that they would suddenly show up really huge.  So if you notice a tumor that is growing in size, you need to contact your doctor immediately.  It's just like with anyone that may have a tumor not necessarily due to NF, if someone that doesn't have nf found a lump and the doctor was not too concerned about it after running tests, they would worry if it grew in size.  I don't know if the percentage of a tumor growing in size is more likely to cancerous if we have NF or if tit's the same for anybody regardless.  What I do know is that because we have NF;  it puts us at a higher risk and if the tumor increases in size there is a 10% chance that the tumor can be malignant. 

Every doctor I saw told me that there was a slight possibility that the tumor was malignant and every one of those doctors told me that they highly doubted that tumor on my left leg was cancerous, but every single one of them was wrong.  So if you find a tumor that has gotten even a little bigger, I strongly recommend a biopsy to make sure.  Does not mean it has to be removed, but if they find out it is cancerous they may have to move it.  My 10% chance ended up being 100%.  The cancer was called Neuro-fibro-sarcoma.

~Kristy~
I'm using flowerlillies1aol.com as my primary personal email now, but I use hotmail to check my aol email, so it all gets downloaded at hotmail.  Don't have to change email just use whichever one you are using.  babbling-brook@live.com is secondary primary email plus use for yahoo groups and other sites I sign up for.  Please be patient with me repling back.
 My gmail kristy.wilday@gmail.com I've decided to keep, but will use mostly for m blogs stuff now, but anyone can write me there and I will respond.  Check out my blogs.  If you send me email from the blog site, it will go to my gmail address.
Check out my blog http://kwilday.blogspot.com/
Check out the books I am currently reading and will be reading.  Not all books listed are ones I am actually reading.
http://www.goodreads.com/review/list?shelf=currently-reading

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To: neurofibromatosis2@yahoogroups.com
From: luckyclovergal07@yahoo.com
Date: Thu, 30 Apr 2009 13:48:33 -0700
Subject: RE: [Neurofibromatosis] back pain anyone?

Thank you for all your input =) I have had an MRI of my spine, this was 2 years ago now, and it was an open MRI....so I don't know if the results come out differently, seeing as it is not the typical one that a lot of people have done. Could it be that the tumor - if I have one - was hidden, and the MRI didn't catch it? I do think (I am pretty sure) that I have scoliosis, but it is a minor condition. It is just that right part of my back, the should blade area, that is messed up. It does not hurt constantly, but there are days where it is pretty uncomfortable. I have grown kind of accustomed to it, so it doesn't hurt as much as it used to...but there have been few days where the pain is killer. I am the first in my family to have NF. I don't have too many reading issues, like dyslexia, though I have very bad comprehension, and sometimes have some difficulties reading some things...but I am getting better at working past that. Do tumors usually increase in size as you get older? I'm 18 now, and have been diagnosed since I was about 4. As far as I know, they have remained a decent size, and noncancerous...I just want to keep it that way! --- On Thu, 4/30/09, Kristy Wilday <babbling-brook@live.com> wrote: From: Kristy Wilday <babbling-brook@live.com> Subject: RE: [Neurofibromatosis] back pain anyone? To: neurofibromatosis2@yahoogroups.com Date: Thursday, April 30, 2009, 4:12 PM I think I have dyslexia and I think it runs in my family; not so sure that I have it because of nf though.  I may.  My dad has it and so does my sister, but my dad doesn't have nf, so it just may be a family thing or both. ~Kristy~ Check out my blogs.  If you send me email from the blog site, it will go to my gmail address. Check out my blog http://kwilday.blogspot.com/ Check out the books I am currently reading and will be reading.  Not all books listed are ones I am actually reading. http://www.goodreads.com/review/list?shelf=currently-reading To: neurofibromatosis2@yahoogroups.com From: s_c_parker@hotmail.com Date: Thu, 30 Apr 2009 20:45:27 +0100 Subject: RE: [Neurofibromatosis] back pain anyone? cant it just. Unfortunately there are so many "side effects" living with NF (is probably the best word i can come up with) i.e. dyslexia for one and why is that such a hard word to spell ??    To: neurofibromatosis2@ yahoogroups. com From: babbling-brook@ live.com Date: Thu, 30 Apr 2009 12:26:37 -0700 Subject: RE: [Neurofibromatosis] back pain anyone? wow!  It can be scary living with NF. ~Kristy~ I'm using flowerlillies1aol. com as my primary personal email now, but I use hotmail to check my aol email, so it all gets downloaded at hotmail.  Don't have to change email just use whichever one you are using.  babbling-brook@ live.com is secondary primary email plus use for yahoo groups and other sites I sign up for.  Please be patient with me repling back.  My gmail kristy.wilday@ gmail.com I've decided to keep, but will use mostly for m blogs stuff now, but anyone can write me there and I will respond.  Check out my blogs.  If you send me email from the blog site, it will go to my gmail address. Check out my blog http://kwilday. blogspot. com/ Check out the books I am currently reading and will be reading.  Not all books listed are ones I am actually reading. http://www.goodread s.com/review/ list?shelf= currently- reading To: neurofibromatosis2@ yahoogroups. com From: s_c_parker@hotmail. com Date: Thu, 30 Apr 2009 20:22:49 +0100 Subject: RE: [Neurofibromatosis] back pain anyone? Well going by my own experience i will have to say YES. Im  sure i have read somewhere that it is well know for people who suffer with NF also suffer from scoliosis which is a curvature of the back. I suffer from this as i have half a vertebrae missing and what the doctors called a "menigocele" (that is there word for it and they told me its basically a "fluid fill mass") growing in its place which in turn pushes against a nerve(s).  This funnily enough started out as a pain in my chest just around the pectoral muscle and was finally discovered by an X-Ray and then went on to other scans.  If there is anything else you think i might be able to help with then please dont hestitate to email back again. Im sorry i might not be able to respond straight away. To: neurofibromatosis2@ yahoogroups. com From: babbling-brook@ live.com Date: Thu, 30 Apr 2009 09:45:37 -0700 Subject: RE: [Neurofibromatosis] back pain anyone? Have you had an mri to see if there's a tumor causing the back pain?  It was a problem for my mom and she had a tumor eating at her spine that cuold have made her paralyzed.   And X-rays do not show anything, so you have to insist on an MRI.  My dad threatened a lawsuit though.  This was 24 or 25 yrs ago. Kristy http://www.goodread s.com/review/ list?shelf= currently- reading To: neurofibromatosis2@ yahoogroups. com From: pawpawto3@yahoo. com Date: Sun, 29 Mar 2009 11:59:13 -0700 Subject: Re: [Neurofibromatosis] back pain anyone? I have had back pain for several years. If it is related to my nf I don't know. Terry --- On Sat, 3/28/09, Rebecca Margaret <luckyclovergal07@ yahoo.com> wrote: From: Rebecca Margaret <luckyclovergal07@ yahoo.com> Subject: [Neurofibromatosis] back pain anyone? To: neurofibromatosis2@ yahoogroups. com Date: Saturday, March 28, 2009, 11:49 PM Hey, I was just wondering if anyone else is experiencing (or has experienced) back pain that might be related to NF 1? I have some issue with my back (under my right shoulder blade) that started about 2 years ago. I read somewhere a while ago that sometimes tumors on the spine can press against nerves and cause pain...does anyone know if this is true? -Rebecca Share your photos with Windows Live Photos – Free. Try it Now! Share your photos with Windows Live Photos – Free. Try it Now!