NF2er in the news

[thornapple]

http://www.woodtv.com/Global/story.asp?S=8022675&nav=0Rce

[Brendalu]

I am anxious to see how Jessica makes out with this.  Thanks for sharing the link.
Brenda

[tony]

Firstly I wish jessica all the best in her treatment
Secondly there is an area of possible concern here
Basically if it makes medical sense to terminate or reduce the blood flow
to a tumour – to kill it, or at least slow it down
Does it also follow that any medication that thins the blood, or increases
blood flow – may actually make the tumour, potentially, grow more quickly ?
Many on the list use self help type medications and preparations
such as Ginkgo Balba  or St Johns Wort – both of which are known
to thin the blood (there are 101 other herbal varieties/supplements that do the same)
I wonder if we could ask the organisers to write an open letter
to two or three acknowledged experts in the field – to get a definitive answer ?
Maybe the "alternative" medications are not so suitable
It would be nice to know
Best regards
Tony

[leapyrtwins]

Thanks for the very interesting link, Thornapple.

I had never heard about NF2 before this forum and don't know a lot about it, but I'm learning.

I, too, am anxious to see how Jessica does with her surgery.   If there is another article about her post op, it would be great if you would share it with us.

It would also be great if somehow we could make her aware of this forum and get her to join us here.  It might be very helpful to her.

Jan

[jerseygirl]

Tony,

Your concerns are perfectly justified. Actually, I was worried about the same thing but am going to keep my Ginkgo despite its blood thinning properties. Let me explain why. The most famous blood thinning medication - Aspirin (and in fact some of the other drugs in its class) - has been found to reduce the tumor size and the number of tumors in certain types of cancer. So, the blood thinning properties per se do not necessarily enhance the tumor growth, quite the opposite has been found with Aspirin.

If you are still concerned and would like to stay away of the St. John's Wort because of its blood thinning potential, I would like to recommend Rhodiola Rosea. I researched it and it is available in the UK. It is supposed it to be a mild anti depressant among other things. I have no idea how it compares to St. John's Wort and I have started taking Rhodiola for a different reason - increasing stamina. Let me tell you - it works! And fast! My only (and big) regret now is not taking it sooner after surgery. It is not a blood thinner as far as I know and it does not raise your blood pressure like Ginseng. While on it, my days are no different than those before surgery and I don't need naps. That means I can move more which will make me recover faster!

Good luck to Jessica with her treatement. Thanks for posting.

                 Eve

[tony]

Thanks Eve I will try that one - the side effects do seem much
less than other alternatives
Possible sharper thinking too ?
Best Regards
Tony

[jerseygirl]

Tony,

When Rhodiola was given to shift workers, they made fewer mistakes and could do their jobs longer. I was swept by fatigue so bad that having an advanced math degree I don't think I would be able to add 2 and 2 together. That happened in the afternoon and evenings.Jiudging by the posts here, I am not the only one. Rhodiola took away my post-surgical fatigue, so in this sense it makes me think sharper.  Please, research and make the decision to take it yourself. I know some suppplements are more potent than others. I take New Chapter Rhodiola Force 300. PM me if you have any questions and please keep us posted. I hope it works for you.

                Eve


                   

[kippy6]

Just curious -- I was referred to a Rheumatologist for an unrelated disorder after my Acoustic Neuroma surgery. He did a lot of blood work, and determined that I have bleeding tendency. Asked me if I wanted to go to a Hematologist. I declined, figuring that if I had brain surgery and didn't bleed to death, that it must not be too bad. (Although past surgeons have mentioned that I bled a lot, even Hitselburger mentioned it).

At any rate, I wonder if bleeding tendencies could affect the rate an AN grows...
I wonder if NF2 people have bleeding tendencies? If a NF2 person were thoroughly tested, I wonder if a red flag would come up with a certain kind of bleeding disorder...

[Omaschwannoma]

For what it's worth (I'm sure you already know, but just in case here goes.....) I started taking fish oil capsules then switched to flax seed oil.  I do not take any other meds and thought this would help with brain function as stated in articles.  I was on this regimine for over one year until one day I was using a very sharp knife and sliced down on my fingernail cutting it to the nail bed.  It took 3 days for the bleeding to stop (was changing bandages every hour the first day/night).  Someone mentioned to me flax seed oil thins the blood.  I quit taking the caps and also found out my headaches went by the wayside too!  Anyway, just thought I'd mention another blood thinning product to you all. 

[msuscottie]

The link is no longer working, but I'd love to see the story. Anyone know where I can find it?

[Brendalu]

Kippy6,
I am NF2 and do not have any bleeding disorders.
Brenda