I am 37 years old and ws just recently dianosed with NF-1. most of my tumors are located in my right calf down to my arch of my foot. I had 2 surgeries, the first was to remove 5 tumors (one on my ankle, 2 on my calf and 2 in hte arch of my foot.) I had a mri after taht and it showed that I had 4 more 2 in the heel and 1 either very large one or 2 in the arch of my foot in the shape of a bownling pin. I can see where the 1 on my ankle came back and the 1 on my calf came back plus I have 2 new ones. The 2nd surgery was to cut the tibia nerve to help with pain. the nerve block worked. It was the first time in 15 or more years that I could jump without any pain. So we went and had the nerve cut, however it didn't work it just spread the pain out over my foot more.
I have been on every pain medication known to man. they either make me vomit or very sleepy. (that is the lowest doesage too) I have 4 boys to take care of 1 is a cardiac little guy so I need to be alert. the last pain medication I was on was Trileptal. prior to that (these were all at once) Morphine, Methadone, Darvon and lyrica. the only thing that really helps and it is very short lived is my hot tub at 103 degrees.
My question is they are talking about doing a spinal nerve stimmulator, can you tell me if you have had any patients that have had good luck with this? especially ones that have NF? All I wasnt to do is function adn go for walks and hike with my kids. (jumping on the bed would be fun too.) I have never been able to even go swimming due to stepping on uneven surface or someone kicking me KILLS me.
Thank you in advance
Hi Michelle, sorry to hear about all of your medical problems with NF. It is also in my family and I have seen many many other families go through so much with this disorder. Have you ever considered going to an NF clinic? You can get a list of these at the NF website. If you need more info on website, please get back to me. Hope things improve, Huey
I do go to the Nf clinic @ Mass Genreal. they are VERY VERY GOOD. Unfortunately every time I have surgery it makes thngs worse and they said that surgery it not an option for me.
I just want to be able to play "fun outdoor" things woth my kids ages 4, 5, 9, and 16.
Thank you for the suggestion
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