Hi to all,
Feel as tho I know some of you already from reading so many of your helpful, honest, and encouraging posts.
...I was diagnosed in Aug 09. 1.5 cm vestibular schwannoma (i love to say "schwannoma"), on right side of head. Terrible tinnitus, hearing is at 50%, /comprehension is at 25% (but i do still hear and comprehend something in that ear)
Visited neurosurgeon affiliated with Piedmont Hospital very soon after that. Left there with recommendation of translab, told to come back when I was ready. Was told nothing about ANA by the doctor or staff. Found ANA (and this group) via good old obsessive web searching and many many nights of staying up until 3am reading posts here. Have since visited same neurosurgeon again (who also does GK at Piedmont). Was told not to decide until i was sure. I had my questions "kind of" answered/explained, but felt as tho I was imposing on his time a little bit. So, both times I left the office feeling like something is just not right with my gut feeling. Part of the problem was my questions--I had made a list to ask, but nothing extra was volunteered or elaborated upon when they were answered. Now, after reading all the great advice here, am realizing that I still didn't ask the direct, to the point, piercing questions that I must know to help make the best decision for me. (Like, exactly how many times have you done this specific procedure, why did you recommend translab even though i still have about 50% hearing and 25% comprehension? and how recently have you performed this procedure?, and how many folks will assist?, (and what specialities are these folks who will be assisting?), and how experienced is ICU with problems that may/may not crop up after the surgery? Have only been in hospital for tonsils and wisdom teeth many years prior, and naively thought that all doctors were like Marcus Welby. Yeah, I know....another newbie hits the posts.
I now have a much better list of questions to ask now, thanks to all the wisdom and support I've been reading here.
I am going to post some insurance questions and some physician questions in the appropriate places later, tomorrow, because I have an intense gut feeling that ATL is not the place to be for trans lab (or any type of surgery)...I'm currently looking at Shands in Florida and House in LA, based on some phone calls to folks in the WTT list, and lots of searches on the topics here on this site. Thank God for this site and for those of you who give your time moderating and posting here.
I dint want this post to be too long, but i want for people to begin to know me, and for me to begin to know and interact with all of you. I have felt so alone before I found this forum. I echo what many newbies have said here--I cried tears of joy when I found and read your posts. I cannot stress enough the importance of building a network of support for situations like this..I kept the diagnosis to myself for two weeks and the impact on my physical, mental, and emotional health was startling (and sadly, was so unnecessary). Once I started talking about it, and telling people, and asking for help, I started feeling twinges of the way I want to approach this: concerned, amazed, curious, scared, angry, surprised, sad. I know I'm feeling all of the above, and beginning to accept that it is where I am, BUT I want to be even more confident that I'm prepared to deal with all this to the best of my ability, whatever "this" might be--from denial to acceptance--I want to be able to say "bring it on". ( I want to, but I'm still saying "why me" most of the time right now. Talk about a piece of work in process!! )
Info about me: Am on the far side of middle age, living in ATL area (near Lake Lanier, 1 hour north of ATL) close to place where I can kayak all the great parts of the quieter northern end of the lake. I work as a virtual assistant from home, providing computer support to small business/solopreneurs-- sending out emails, e-newsletters, and modifying/maintaining web sites, ...have also taught junior college and adult computer literacy classes most of my adult life, etc. At least I wont have a long commute when I start back to work!
I Have a great husband, Dennis, and wonderful supportive family and friends (in GA, SC, NC, FL, MO, OR and WA--(Puget Sound!! Yay!!)) who are all encouraging me to read, research, relax, and ride as much as I can right now to get ready for all of this.
I love to read, garden, travel, kayak, and ride horses (---just got to take my first lessons in my mid-fifties but am loving it). My passion is working with horses...I am currently training two horses (rescued from not so good situations) in "ground manners" using a technique called Parelli...this is a systematic way of communicating to horses in a respectful and assertive (not aggressive) way, to establish clear communication guidelines for horses . This helps set up relationships that are respectful of the horse and SAFE for the human. I do this so the horses can be used in equine therapy programs for disabled/at risk kids, and I do this for the love of horses. This helps scared, uncertain horses become confident and comfortable with themselves and humans (and thus safer) again. I have run/walked the Peachtree Road Race (6.2 miles) for many of the last 25 years of races, and am planning to do the next one on July 4, 2010. I have already contacted friends at an equine therapy facility about the possibility of using physical therapist-assisted horseback balance exercises because I'm trying to see this surgery (and the possible need for balance therapy) as a way to keep horses in my life, as part of my recovery. I'm also planning on applying some of the Parelli training techniques and theories on myself as I work my way through all this. All of this helps me deal with what is happening...gives me something to aim for.
Thanks for reading ...I wish I could think of something profound to say, but all I can say again is thanks in advance, and hope to talk with you soon..I am so so scared and that's why I just keep typing and typing tonight..this is my first post after weeks of lurking, and my hands are literally shaking with this wild mix of emotions...guess you've read posts like mine before, but the beauty of this forum is that those who post here know and accept where each of us is, and still reach out with help and support...which is why I'm here...to share (hopefully both ways) the support we can give each other
Tricia
