Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
I have a tumor in my left ankel that is so large that i no longer have any tissue left its just tumor and bone. I have had surgery on it 3 times already to have parts of the tumor removed. The last time i had surgery I had to have a piece of bone grafted in to replace part of the bone that the tumor had worn away. had that done about 2 years ago and last year when I had it checked the tumor had worn so much away again that it was almost as wores as it was before i had surgery. I was woundering if any body new or had any ideas of what I could do. I have a lot of pain in my ankel most of the time and what makes it even harder on me is that I do not have medical insh.
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I have been here before, a long long time ago and now I am back.Forgive me for not just saying what I want to say,even under a triple dose of antidepressants it is still raw and seeping and I am hesitant at revealing it as at least under the bandages around my heart I don,t have to look at how raw and wounded.My child was cleaved from my heart by his own actions. my child of ten,turning eleven...
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
One thing that dose help besides the cane, I bought a ankle wrap for injurys at the sporting goods store.It wraps around your ankle and stays there so you can get around with it on.It has a puch inside to put a heat or cold pack and holds it to your skin.It helps with my swelling witch helps with the pain.Also got pain patches for my leg and put them directly on the tumor.( althoug it hurts to touch sometimes ) also elevation with the cold wrap can help, sit at least a half hour with cold on befor getting up and going.I also now take Zanaflex for the nerve pain and it helps quite a bit.Massage and accupuncher or accupresser thearapy, Hot stones also help.SOme of this like the meds can be got from PPA or another offer from the drug companys can get you the meds you need for this at little or no cost.Get the reusable cold an heat packs so have extra if one, if the one you are using gets warm or ciold before you have a little relief.
Hope that helps, msg me if you want to I be here to help if I can.
I know that some tumors are hard to have surgery on becasue of size and or location, and alot of us just have to deal with the pain, becasue they can not be fully removed or it grows back to quickly.
Hugs and prayers to you.