Tuesday, April 13, 2010

2010 CTF Patient Forum

This past weekend my husband and kids joined me at the 2010 CTF Patient Forum in Las Vegas. I was excited for months ahead of time, and so relieved that Paul's hernia surgery healed quickly enough to attend the symposium just one week after his surgery. Most of the weekend was captioned with CART services, enabling me to read everything said by the speakers on a large screen. CTF did a great job of giving NF2 its own attention. NF1 is so much more common it tends to overshadow NF2 at most of these conferences, which excludes and frustrates those of us fighting NF2. Still, out of 187 attendees I was the only Deaf person! I really expected there to be more, being that NF2 causes Deafness and it is an NF conference, but for whatever reasons the NF2 community did not show their strength in numbers. Those of us who did attend were very happy to be included and enjoyed visiting with others who are seriously dedicated to the cause.

CTF knew that those of us who came to learn about NF2 did not need or want to sit through hours of information on NF1 just to get a little attention at the end. That has been my experience in the past. Instead, the issue was dealt with by including a 4 hour break out session completely dedicated to NF2, featuring top doctors from HEI and Ohio State. I was mostly looking forward to "Complimentary and Alternative Medicine: Where is it headed?", but the speaker canceled at the last minute and instead the entire session focused on vestibular schwannoma. VS are the most commonly associated tumors with NF2, and are required diagnostic criteria of the disorder. These are the bilateral tumors of the vestibular nerves that cause Deafness, facial paralysis and balance deficits. If left untreated they can squeeze out the brain stem and even grow forward towards the eyes causing blindness, and eventually death. They are the major concern of almost every newly diagnosed NF2 patient, and this break out session did a great job of addressing the 3 current treatment choices available to patients: watch & wait, surgery, or radiation. Surgery was the active option of choice amongst every single doctor that spoke. We were told that irradiated tumors will simply grow back, and may even turn malignant at a later time. The opinion given was that most young patients would want to avoid radiation because of these possible complications. I commented that many people with NF2 don't have the liberty of worrying about possible complications 15 years down the road, we have to fight back now and consider quality of life if we even want to live that long. Radiation is generally outpatient and minimally painless, while brain surgery is a hugely painful and dangerous risk. I thought the doctors presented a bit of a one-sided perspective on the issue. They gave the rates of regrowth for irradiated tumors, but not for surgically resected tumors, which they did not mention tend to grow back as well. There is no right answer when it comes to NF2 and treatment, but both options are worthy of equal consideration. The doctors who presented seemed mostly concerned with hearing preservation and ABI placement, personally I am more concerned with survival.

That all being said, I appreciated all of the information presented. The doctors were highly educated men with an obvious desire to help their patients. As I previously mentioned, the entire discussion did revolve around vestibular schwannoma and hearing preservation, and I commented on this as well stating that while I obviously understand the need for VS discussion in an NF2 session I would like to have been informed about all of the other tumors we face as well. People with NF2 develop many different types of tumors and can grow them on every nerve ending in the entire body. VS and deafness tend to be the least of our worries when we have so many spinal tumors we can't even count them and are facing paralysis and death. None of this was discussed, but the need to discuss them in future sessions was acknowledged and agreed upon.

The Forum is an annual event, and having this NF2 break out session this year was a huge step for those of us interested in staying involved with research. In the short amount of time allotted the doctors managed to cover a lot of important topics, and I have no doubt that in subsequent years the topics will broaden and improve. If we as an NF2 community want to be given attention by the researchers and doctors, then we have to start showing up in force! Those who stay home, don't get involved, don't donate, and don't research their disorder for themselves are putting all of us at a disadvantage. Many of us are unable to do many things, but all of us can do something. If you want to be involved, but just don't know where to start or feel overwhelmed, you are not alone, and I am making it my business to be available for anyone who asks. There is strength in numbers, and together we can reach a cure.

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Felicity said...

I think we need a better system for networking. I get the newsletter twice a year, or is it four times a year? By the time the forum in Vegas happens I have totally forgotten. Also, I see online there are several forums and support networks. I think it would be hugely beneficial if all of those could be unified into one spot, so that we are all together in one place. I also think the Children's Tumor Foundation should send out emails with updates once a month about what's going on. When I go on line looking for information or insight I find i'm all over the place traveling in circles. Maybe they could even have an ambassador or something. We could compile an email list and ask for CTF to make a monthly bulletin for us to send to everyone. I'm just brainstorming, but it seems so hard even to connect with other people with this disease.

Cindy said...

Thx for the review. ONLY ONE DEAF THERE, WOW. I REALLY REALLY WISH HAD GONE NOW. And yes these meningiomas and ependymomas that squeeze the life out of you are equaly as serious.

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