ANA Discussion Forum
General Category => NF2 => Topic started by: Steve1100 on October 17, 2008, 10:47:59 am
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Hello everyone,
My 17 year old son was very recently diagnosed with NF2; he has a 3 cm tumour on his left accoustic nerve which has pretty much taken his hearing and is pressing against brain stem, and a 1.5cm on the right where his hearing is still good. He's also having a scan on his spine shortly which I'm praying isnt going to show anything.
No family history so far as I can establish, we also have a son of 20 so we have a major concern for him as well.
We're currently going through a series of meetings with people on the team that are dealing with my 17 year old. They're based in Cambridge England and I understand that they are well practised in dealing with NF2.
As you can imagine, I'm frantically reading up on what I can (and scaring myself silly) to try and find any helpful information to slow the growth of the smaller tumour (at the moment I'm reading up on anti cancer foods as it seems that there is a logical link). Obviously the scientific medical approach is the going to be the main way of dealing with this, but I believe that there are other things that we can do to help him.
Has anyone here had any success in slowing/stopping/reversing growth in tumours through diet and lifestyle? If so, how did you do it?
I've also read that there are instances of "smaller tumours" suddenly shrinking and vanishing of their own accord. Has anyone experienced that and how big were they?
Thanks for taking the time to read this and any responses that you can make.
Steve
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Steve~
I am so sorry for what you are going thru with your son - I can't even imagine how hard it is. I wish that I had some wonderful advice, but I don't. I know that there will be others that will chime in though. I will do what I can do and that is pray for your son and your family.
Peace to you all during this rough time,
K
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Hello. I am very sorry to hear of your son with the NF2. I was an older adult onset of NF2 at age 49 after already having one AN removed. I have now had 3 tumors removed and am 56. No spinal one so far but will get a spinal MRI again next spring.
I was close to deaf and had my last surgery 6 mos ago today at Univ of Iowa which is where I go for treatment. The mid fossa was a success and my hearing improved greatly as was due then for a cochlear implant which was not needed.
Are you aware of House Ear Institute in Los Angeles? They do many NF2 pts also. There are AN symposums every other year and I have talked to the drs from House at them. Dr Slattery is super. They have had good luck with doing mid fossa and there is the possibilty even that the smaller one of your son could be removed and keep the hearing. I know I was scared of that happening and did not until next to deaf as am on the other side. It worked though.
I will send you a personal message and give you the email address of a couple from Michigan who are very into NF2 as their son has it. He now is a little older but has had good results with an ABI. I see them at the symposiums. I have been to the last 3. There is also Jeff here who can give you info with his NF2 and also family. There are other NF2ers here on the forum.
I am not aware of anything working to help the tumors but there are some here who do use some foods and herbs.
Good luck to you all. Cheryl R
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Thank you Cheryl and Kaybo,
Prayers and kind words are very welcome.
Steve
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Steve
There is also another foum nf2crew.org I believe. They are all NF2ers and can help a great deal. Age ranges from young to older. I do hope this helps. They are great people. ;)
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Steve,
So sorry to hear about your son, having two boys myself, ages 10 & 14, I can't imagine what you are feeling right now. To answer your questions, I have not heard of any diet or lifestyle change that would slow down the growth of the tumors. I woke up one morning last summer and was deaf in my left ear, happened over night, I was 48 then. This led to an MRI which showed bilateral ANs meaning NF2, another MRI showed five small tumors on my spine. CheryR is right when suggesting the middle fossa approach, this procedure gives a good chance of preserving the hearing nerve for a possible cochlear implant. Besides CherylR, there are a few other NF2ers here with tons of knowledge, please listen to them, I did and learned alot.
John
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Hi Steve,
I just wanted to extend a welcome to you and your son. I'm sorry to hear that you are going through this now and do send along my wellness wishes. There are some really great folks here and many truly knowledgeable about NF2. Hoping the info here will be helpful... as well as the hugs and well wishes.
Again, good to have you (both) here.
Phyl
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Hello Phyl and John,
Thank you for your best wishes.
Steve
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Steve -
I'm sorry to hear about your son's diagnosis.
I don't have NF2, but I know how shocking and scary it was be diagnosed with an acoustic neuroma, so I know a tiny bit of what you and your son are going through.
Our forumites who have NF2 have great attitudes and I've learned a lot from them. I think you'll find them to be a wonderful resource for you and your son.
My best to both of you. I'll add your family to my prayers.
Jan
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Thank you Jan.
We're grateful for your support.
Steve
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Steve~
There is another ANer on here that I thought might chime in - maybe he is out of pocket this weekend - his screen name is "Tumbleweed" and he seems to know a lot about diet and different wholistic approaches that are good for your body. You might try sending him a PM.
K
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Steve 1100,
Some topic links for you, since I like to do this sort of thing:
NF2 Tumour Suppression
http://anausa.org/forum/index.php?topic=7370.0
My holistic, natural therapeutic approach
http://anausa.org/forum/index.php?topic=5782.0
Holistic Treatment
http://anausa.org/forum/index.php?topic=7090.0
Natural remedies anyone ??
http://anausa.org/forum/index.php?topic=1727.0
Tony, who started the first one above, NF2 Tumour Suppression, is an NF2er. I think he said he was going to try the bee propolis (see the link for more details). He would be a good NF2er to get a hold of, anyway. Tumbleweed (regular AN) started the second one, and has posted in several others as well.
Steve
One more link, the NF2Crew web site:
http://www.nf2crew.org/
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Hey BJ, the hat knitter~
Thanks! ;D
K
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Sorry I was "asleep on watch" here
I am Tony, NF2 in the UK
I am sorry to hear of your problems
So Diet - Yes
There are signs (early days here)
That improved diets can help
Basically the fresh fruit and veg - ie from farm shops
so in season where possible
Helps the body to improve its own defences
Look up CAPE (Caffeic acid) - any natural food
with this in a natural form should assist
In terms of the health option - Curcumin/Tumeric
is thought to be good - but there is no medical evidence as such
In terms of a known suppressor
at 17 he maybe yet too young to try
(it may restrict the bodies natural growth ?)
Bio 30 propolis is a supplement that is in unofficial trials with humans
- about 100 around the world (I am one of them)
It did work on a limited trial in the lab with mice
and we all hope it will help us
This has reports on the net - drop me a private note
and I will send the links
In terms of a NHS cure - we think human trials about 12mths away ?
Final thoughts - certain parts of the UK have dedicated
clinics for NF2 - where all the knowlege and checks
are done under the same roof
- once a year general NF2 MOT ?
It is worth to seek one out for the young man
Hope this helps
Best Regards
Tony
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Hello Tony and Steve,
Thank you for your replies. There is plenty of information there to be thinking about.
Regards
Steve
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Steve- I am an NF2 from the State Of Kansas. My first one manifested itself at Age 38 and the 2nd one at the age of 55. I cannot even imagine dealing with this at the age of 17 so my heart goes out to you and your son. My first AN I had surgery leaving me deaf-the 2nd one I had radiation. I still have hearing but it is down to 29% in my only hearing ear. Without a hearing aid-I hear absolutely nothing. I wish their was something I could say to you and your son to make things better. However- I for one have accepted this and take it day for day and glad I am still alive although with a profound handicap. (Hearing). Keep us updated if you would like-sometimes just hearing from people who understand is medicine for the mind in itself- I know it was for me. Take Care My friend-and God Bless. Ron
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Hello Ron,
Thank you for your note. As you know there isn't anything that anyone can say, as sometimes there just aren't the words; this is one of those situations.
I am sorry to hear about what happened to you, this is a terrible thing to have to deal with at any age.
For my son, we have hope that science will win the race against nature and that the smaller tumour will not grow for a while.
Take care of yourself Ron, it was good to hear from you.
Very best wishes
Steve
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Hi Steve,
I'm sorry to hear of your son's diagnosis. I know what you're going through. My daughter was diagnosed at age 13 - when we discovered her spinal cord tumors, which were successfully removed. NF2 was confirmed as she also had bi-lateral acoustic neuroma. You are doing exactly the right thing by researching everything you can find about NF 2. I cannot emphasize enough how important it is to take your son's medical care into your own hands. If I had listened to the first neurosurgeon we went to, my daughter would be completely deaf now - he didn't want to operate until her hearing was gone! Through this website, I learned of the House Ear Institute in LA. I obtained copies of my daughter's MRI's and sent them along with a letter to the doctors at House. Within a few days, Dr. Friedman called me personally and told me what he could do to help. Long story short, within 6 months of that conversation, he successfully removed the smaller of her tumors - about 2 cm- without damage to her hearing or facial nerve. She's doing great. She is 17 now, and we are "waiting and watching" the remaining tumor.
Please don't let any obstacle prevent you from at least contacting House Clinic. It is THE BEST PLACE IN THE WORLD to get treatment for NF 2 tumors. I was worried because we live in Texas and House is located in LA - not exactly a day trip for us. It's worked out fine - we get our MRI's done locally and send the films to Dr. Friedman for evaluation. My prayers are with your family.