I was diagnosed with NF 20 years ago; I am 36 years old and suffer from many neurofibromas on my arms, chest, and back. They recently started coming on my face.
I heard about CO2 laser treatment to remove these. I found a doctor who specialized in this and the treatment of NF patients. I drove about 2-hours to my appointment today. He had me remove my shirt and took photographs. He then said something that floored me. He said that he was going to write me a prescription for a topical application that was proven to make the neurofibromas go away, completely, within 3-months ... maybe even two. I couldn't believe my ears. He is not only a practicing doctor, but an instructor and researcher at one of the most respected universities in the country. I told him that in all my research, I had never heard of such a thing. He said, this is very new and he doesn't advertise it. The medication has been around for over 40 years and he just started using it on some of his patients, far worse than me and "it worked". I had surgery scheduled for September 14th to remove two larger tumors (1 to 2 cm); he said that I shouldn't need it. I took the prescription to Walgreens today; they said that it was a special mixture that had to be ordered and that I should expect it tomorrow. I returned to my car and I cried for about 30-minutes ... not out of sadness, but out of joy that there could really be some treatment out there for these unsightly lumps. I will start the treatment tomorrow, perhaps. I will continue to update others on my progress. Note, the medication is designed to treat scars; and that is what he basically said his research showed that neurofibromas were ... scars (swollen tissue) as a result of the nerves. They can be treated just as any scar. His confidence was off the charts and he made me a believer before I had even started using it. I will keep the hope. Thank you for allowing me to share my post. I promise to take photographs of my condition and do so on a weekly basis. If this is truly effective, I will share with the world. That's a promise.
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Latest Treatment for Neurofibromas
- By WayneK
- Posted August 20, 2009 at 6:08 pm · 50 replies
- In News, research and advocacy
- Shared with the public
50 replies
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- Newest first
- By mlissah
- Posted August 20, 2009 at 9:24 pm
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what is the topical called, and if you don't mind me asking, where is this doctor located?
- By WayneK
- Posted August 20, 2009 at 10:17 pm
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The base ointment is call Avosil, but the doctor actually wrote a prescription requiring the pharmacy to mix it with another ingrediate. I'll let you know what that was tomorrow. Avosil can be purchased over the counter, apparently, but because of this additional ingrediate (15%), the pharmacy had to order it through their other facility. I went to the University of Chicago's Center for Advanced Medicine. This was the "Plastic Surgery (Cosmetic) Department".
- By mlissah
- Posted August 20, 2009 at 10:32 pm
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Thanks- I want to ask my doctor about it, and I'm sure he would write me a prescription for that- I'm curious why it isn't out there for general knowledge? Is he still testing it?
I will also be 36 this year (Nov) and have known I've had NF my whole life (inherited). It was not something that really concerned me too much until this year- it's really getting out of hand and causing me alot of anxiety. It's showing up on my face, and I admit, I'm vain, so really affecting my self-esteem. I have been going to plastic surgeon here and thinking about ED in Texas with Dr. Melmed in the fall when I can cover everything up while it heals.
Anyway-thanks for the info, and I hope it works out for you!
- By WayneK
- Posted August 21, 2009 at 1:01 am
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Funny, you and I are very close in age and probably share similar issues. Mine just started showing up on my face this past year. At first, I thought they were pimples ... then, when they never went away, I realized my worst fear had come true. That's why I started seeking out plastic surgeons. I promise to keep you posted. I will even go as far as to scan the exact prescription and email it to you. I asked the doctor why on earth was this type of information not made public ... his response, in the most casual sense, "I just don't advertise ... give it 3-months and they should be gone, perhaps even 2-months". I responded, "and these on my face?" ... he said, "yes, of course, those too".
- By CindyLouWho
- Posted August 21, 2009 at 8:16 am
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You know this is interesting, I had heard maybe about 18 months ago about a doctor who was using avosil for neurofibromas. I thought though that the information I was given was that it worked best when mixed with vitamin D, if I recall that correctly. Anyway, it has come up a few times about salicylic acid and neurofibromas on the other BB and I mentioned that I had heard about it for NF but nobody ever came forward to say they've tried it and nobody seemed interested in what I had heard so I figured that was the end of it. Some folks in the NF community knew about it or I wouldn't have been told but why there wasn't more buzz I'm not sure. Back then I did some research on the product and the before and after photos of scars was impressive. It will be interesting to hear if it improves the appearance of neurofibromas as dramatically. Salicylic acid may not be for everyone as some people can be very sensitive to it. Salicylic acid in different formulations is found in acne face wash and in much stronger amounts in wart removal stuff (don't try that at home). I think these were the articles I was sent at the time.
http://www.avocetcorp.com/avosil.html
http://www.eplasty.com/pdf/volume04/jobw04e6.pdf
Anxious to hear how it goes.
Cindy
- By CindyLouWho
- Posted August 21, 2009 at 8:17 am
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Oops sorry Wayne, I deleted my post to correct a spelling error and now we are out of order. So you were also given vitamin D as a separate prescription?
- By WayneK
- Posted August 21, 2009 at 8:37 am
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Yes. Two prescriptions; one for the ointment and vitamin D.
- By CindyLouWho
- Posted August 21, 2009 at 8:57 am
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For some reason the CTF search engine will no longer take me back to my archived posts there, I don't think its been working well lately. Also I understand that we are not allowed to post to the other site thru here? I did find two threads where we discussed salicylic acid in a few different forms, one was about coal tar from Nov 7, 2007 and the other was about Trolamine Salicylate(asper cream) and tumors. These are available through google. Unfortunately, I can't seemed to find the main one about avogel/avosil that I was looking for. Anyway, it doesn't matter.
Please keep us posted.
Cindy
- By vandyson
- Posted August 21, 2009 at 9:13 am
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Hello wayneK ! Now this is very interesting. I have read all the post on this. I wanted to ask you if vitamin d was the ingredient they mix with the avosil. I know you said he gave you vitamin d too. But I wasn't sure if this was the actual ingredient or a seperate script. Please let me know.
- By mlissah
- Posted August 21, 2009 at 10:31 am
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Hi Wayne! yes-I thought the same thing when I saw your post-we do share very similar stories. It's nice to know someone who has experienced the same things. I see in your picture you have a son? Dis he inherit? I have two kids, and so far neither has shown signs, although they each have one CAL. the pediatrician says not to worry-if they had it, they would have shown signs by now. (I still worry, and examine them as discreetly as possible so I don't freak them out!) they are 11 and 7 now. BTW- I have been researching "cures" for about 8 or 9 months now- I saw that Bio 30 Propolis was being used and looked promising. I started taking 9 mg a day (probably overkill, but it can't hurt) I wouldn't say that I see a reduction, per se, but, I think it has slowed down a little, and I haven't had a cold or been sick since I started! I also have heard about omega 3's. well, now I take 1 capsule 3x a day of that as well. It's hard to say whether any of this works, but, like I said, I think it does a little, and it makes me feel better, so, I do it. II also, in the winter, take the vitamin d, I am out alot the rest of the year, so I get plenty of vitamin D then. I had never heard about salysillic acid before, but most of my products have that in it anyway. I am going to research the Avosil today. Thanks Wayne-sorry for the long post.
- By azur
- Posted August 21, 2009 at 1:08 pm
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Hello, I am french but it seems that Avosil is only sold in US. Could you tell me what components are in the cream in addition to salicylic acid ?
I could speak with the dermatologist and find a similar product in France,
thanks a lot for your answer
- By rdsc143
- Posted August 21, 2009 at 2:48 pm
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Wayne
Thank you for sharing this information. It has given me hope! I would love to find out what the perscription is so I can ask my doctor about it. I am 28 and within the past few years have stated developing more neurofibromas on my chest and arms. They are the flatter (reddish purplish) kind...and also the ones that raise the skin a bit that you can only see in certain light...I hope the ointment will work on these as well.
Thanks again! :)
- By aumsville
- Posted August 21, 2009 at 3:55 pm
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OMG, than you so much for sharing this valuable information with all of us, please keep us posted as of your progress :) Good luck!!
- By blkdolfin
- Posted August 21, 2009 at 5:40 pm
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I'm going to share this with my daughter. She only has a few fibromas now on her neck, arm, but I'm sure she will want to know about this. Thanks so much for sharing! I wonder why more doctors aren't perscribing this.
- By worried_mama
- Posted August 21, 2009 at 9:26 pm
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that's is a very welcome development. I hope & pray you will get the results within 3 months. Though I'm from the Philippines but may I know the doctor's name & from what STates he is?
- By Paul12
- Posted August 21, 2009 at 9:27 pm
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Could you tell me the doctors name? Thank you
- By MsFeathers
- Posted August 22, 2009 at 12:59 pm
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Hello To All,
I just had to join this group after reading this post,
which seems like a miracle if it really works.
To WayneK, what other ingredient is mixed with the Avosil? Can you share that publicly?? Is Avosil alone just as effective??? I only have a few Fibromas on my arms, but I am
truly tired of the long sleeves
Thank You for sharing
MsFeathers
- By Jullian
- Posted August 22, 2009 at 2:46 pm
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wow this sounds great and very promising. I would like to hear more about this too.
Now do you do both treatments the co2/laser + the ointment or what?
It's funny I read this now as I'm scheduled to go see Dr. Weinberg next week. humm
As we all know Dr.Weniberg is the greatest and has treated hundreds of people with everyone being pleased so which would be and work better ?
The only drawback with him is he can only remove a certain amount at one time which is hundreds,but that's great the best.
I'm really confused now but most likely will try both. Now that doesn't sound crazy does it ? Well come to think of it not really because the ones he misses or doesn't do the ointment can be used .
Anyway Wayne please please let me know about this as I want to be on the road to recovery,as we all do.
God bless and the best to you with your new found treaatment.
PS can you send me your e mail so you can educate me on the Avosil and the other ingredients ?
thanks
- By SAM22
- Posted August 23, 2009 at 4:22 am
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HI
can u tell the name of the medicine the doctor has told
i m in India
please tell us if u see any difference
i have started homeopathic medicines since jan 2009 and i have seen that there were no new growth of tumors
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