Does any one that has NF1 hered of a tumor in the throat

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Does any one that has NF1 hered of a tumor in the throat

Postby eeryoures » Tue Nov 15, 2005 2:21 pm

I just found out that I have a NF tumor in my throat.I have to take an MRI Friday .Then after that they are going to do a biopsy.We are hoping and praying that it is not cancer.
myself and my son has NF 1 ,My son is 14 and he has 5 leasion on the brain .four of them are verry small and one is a little bit bigger.He is doing just fine .
Ps if any one wants to chat email me at raccahmj@aol.com
Thank you ,
Melissa <a href="mailto:raccahmj@aol.com">raccahmj@aol.com</a> <img border="0" title="" alt="[Razz]" src="tongue.gif" />
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Does any one that has NF1 hered of a tumor in the throat

Postby CoconutsGrandma » Tue Nov 15, 2005 6:35 pm

Hi Melissa,

I just wanted to say hello and send good thoughts your way concerning the NF tumor in your throat. My fourteen-year-old daughter has tumors in her throat and has had surgery to remove some of them-none of them have had cancer.

Chances are yours will be benign-just keep thinking positive, and good luck!1
Becky
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Does any one that has NF1 hered of a tumor in the throat

Postby eeryoures » Wed Nov 16, 2005 5:32 am

Hi,Grandma to coconut
Thank you for writing to me .Did she have all of them remove at the same time? Iam glad that they where not cancer, I Hope that it is benign .
Thank you for emailing me .
Have A Happy Thanks
Giving
Melissa,Harold
Joshua
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Does any one that has NF1 hered of a tumor in the throat

Postby frank06 » Fri Nov 18, 2005 3:10 am

hello eeryoures, my 21 year old son, then 20, had a growth in his throat (on) near his esophages (sp) and had it removed successfully, no cancer. and with the last follow up, he is doing OK and nothing came back-----Thanks (he does have NF1
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Does any one that has NF1 hered of a tumor in the throat

Postby eeryoures » Fri Nov 18, 2005 4:58 am

Hi,Thank you for the info.I like to read good things iam 36. I have one son that is 14 will be 15 on Feb 15 .He is my only one and he has NF1 to,
he has 5 leasion on the brain and a few other things.As you can see like a mother that iam
I take go care of him.One thing that I have to say my husban is good .He their for me and his son .We been maried for 16 years,and we tell each
other I love you more then 10 times a day <img border="0" title="" alt="[Big Grin]" src="biggrin.gif" /> .
I have a question did he have to stay in the hospital for a few days?The tumor i have is where you swallow on the right side. Iam going to do an MRI this moring and on the 29 of NOV Iam going to find out what they are going to do .
I will keep yall in my prays.
Thanks again,
Melissa,Harold,Joshua
Racca
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Does any one that has NF1 hered of a tumor in the throat

Postby susannfmum » Tue Nov 29, 2005 11:10 am

Hi Eeyoures

My daughter Amber has plexiform NF1 from Right ear down to neck, had tonsils out a few years ago to make space and debulking of pharangeal space under chin in front of neck last xmas,and damaged facial nerve, they also took growth from her throat and made scar tissue down her throat, so that hopefully it will stop it growing back.In total was a adult fist full of growth removed. Her throat is on a angle, but there is space now, where last year there was only a tiny hole to breathe and eat down.

Her voice box and palate have been moved by NF.

I have noticed that it is growing back behind her ear and that her teeth are crowding, Spec wants to put a tube down her nose again to see what's going on with her throat, beginning of 06.

Susannfmum
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Does any one that has NF1 hered of a tumor in the throat

Postby frank06 » Wed Nov 30, 2005 2:59 pm

hey eeryoures---sorry I just got to read your post, he stayed over night only one night---he is doing OK--Danny also had 3 lesions on the brain and l on his optic nerve (where the 2 join) nothing has grown with them though--prayers are with you and your family--I know it is a constant worry--but all of us here at the board have very broad shoulders and will always listen and give our advice--GOD BLESS thanks
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Does any one that has NF1 hered of a tumor in the throat

Postby eeryoures » Wed Dec 07, 2005 5:21 am

Good News everyone.I saw my Doctor the ENT Specialist and I bought my MRI scanes for him to look at .He said that I been having this tumor sense 2002.It has not grown sense then and that was good for me .On the last MRI in 2002 the radiology saw a groth but my Neurologist did not tell me nothing .I found out about this when I went to see my doctor for my sinus ,that is when he saw the tumor in my throat. Then that is when i had to see Dr. Friedlander he is a specialist from New Orleans.He said that it was best to do a nother MRI in 3 months to make sure that their is no change.That was good new for me . the only thing is that i have to pay for is the MRI test and that is not good .I have insurance thank God for that .
My son Joshua he is 14 and he has NF1 to and he
has it more then me .With all the test he has to take .And we dont get any help from the state .I think that if you have a serious illnes they should help .but it does not work that way.
I want to Thank everyone thats has writen to me .I hope everyone the best of care and God bless everyone.
Have A Merry Christmas and A Happy New Year
to everyone. From,The Racca's Family
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