Author Topic: ANA in Romania - need help  (Read 1811 times)

dasanti

  • New Member
  • *
  • Posts: 11
    • Dasanti's story - only in Romanian for the moment
ANA in Romania - need help
« on: November 23, 2008, 06:20:46 pm »
Hi there! I am writing you from Europe, Romania.

I am a happy healthy 29 years old guy that overcame a +5cm big AN.

The story made me offer support for other diagnosed patients but also for skull based tumors as Romania's medical system lack the equipment and the professionals to cure these diseases.

I would like to ask for your help, if you have documents with exercises and other important documents (not links to websites) that could help me create a specified new diagnosed patients info kit.

I want to start an ACOUSTIC NEUROMA ASSOCIATION in Romania as we do not have a support group in our country and my website (only in Romanian for the moment) has become the mainly research page for skull based tumors.

I am sure we can exchange documents and other important info with latest treatment options and other useful info as I really want to help others.

Kindest regards,

Dan Santimbreanu aka Dasanti
AN 4.5cm @ diag time of MRI (6/Dec/07)
AN + 5cm @ time of surgery (26/Feb/08)
Retrosigmoid in Hanover = Germany, by Prof. Dr.h.c. mult. Madjid Samii/Prof. Dr. Rudolf Fahlbusch
SSD post op - right side.
temp. facial paresis post op - facial nerve & function preserved
7mth MRI Sep/08-no tumor :-

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: ANA in Romania - need help
« Reply #1 on: November 23, 2008, 07:05:06 pm »
Hi Dan (Dasanti),

I suggest you contact the ANA itself. They have a number of booklets available, covering a range of subjects, including Improving Balance Following Treatment for Acoustic Neuroma. They are offered for sale at this site: https://secure.baxinternet.com/~anausa/for_sale.html

Since you are interested in creating a Romanian ANA, they may be able to work a deal for you - but you would have to discuss that with the ANA. You can find a number of contacts and other information at the main ANA website, http://www.anausa.org/. They have an email address, phone and fax numbers, and a mailing address there.

Please let us know what you find out, I would be very interested to hear about it.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

dasanti

  • New Member
  • *
  • Posts: 11
    • Dasanti's story - only in Romanian for the moment
Re: ANA in Romania - need help
« Reply #2 on: November 28, 2008, 09:30:59 am »
Hello!

I currently have a blog that is only only in Romanian for the moment that shares all the information for newly diagnosed patients of AN or other intracranial tumors. Our medical system is a joke and unfortunately many people do not have the cash to go abroad for surgeries.

I want also to create support groups for people who do not use the internet, to create brochures and other type of informational materials, host meetings with surgeons and radiation experts.

The only problem is time. I am over my head with calls on my cell phone as when you type "neurinom acustic" on Google the first page is mine... An people call to receive advices. I cannot refuse to help them as I am grateful God for being healed.

So I can for the moment gather all types of materials that all users on this forum have to publish them on my blog and I hope furthermore I will receive help from ANAUSA. Romania is a poor country and we cannot afford to pay for these materials for the moment. They need also to be translated, translation that I can do for free as I speak good English.

I want to partner up with important names in the Healthcare Industry. I work for Siemens in Romania and I want to try to convince them to support the AN association. I also would need your advice on how a association is run as I have little experience with that.

Thank you all for your help!

Dan
AN 4.5cm @ diag time of MRI (6/Dec/07)
AN + 5cm @ time of surgery (26/Feb/08)
Retrosigmoid in Hanover = Germany, by Prof. Dr.h.c. mult. Madjid Samii/Prof. Dr. Rudolf Fahlbusch
SSD post op - right side.
temp. facial paresis post op - facial nerve & function preserved
7mth MRI Sep/08-no tumor :-