ANA Discussion Forum
General Category => AN Issues => Topic started by: Tricia (horsekayak) on October 27, 2009, 11:13:37 pm
-
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
-
Well welcome, Tricia. :)
As you said, you can get into all the details in other posts, but it sounds like you are aware of the basic issues and that finding the right doctors for you is worth it.
We all know what it is like when you first find out you have a tumor in your head. The good news is that while this is certainly going to be a bit of a wild ride, most people make it through fine, and learn something about themselves along the way. It is a little scary, but it should not be terrifying. You sound like you have some active interests in your life, and good friends and family at your side, which will serve you well and help keep you going as you make your way through this.
So welcome to the forum, please make yourself at home, you are one of us now. Others will be along to wish you well and offer information and support, depending on which you need at the moment. Ask anything and everything.
Steve
-
Hi Tricia,
Welcome to our wonderful AN family. So sorry that you had to join us, but glad you have found this forum. You have already made great strides, by that I mean you have opened up so that we may get to know you better. Your ability to research the Web, will certainly be beneficial to you also! Ask any questions you want as many experienced people have quite extroadinary stories to share. We are here for you and want to help you with your AN journey! Blessings always,
Jackie
-
Hi Tricia,
Welcome to the the Forum - you have already discovered this is one FANTASTIC group! ;D
I am curious - have you considered radiation treatments? You only mentioned surgery.
[I have been here just a year and still in W &W. My sister is here, too.]
I enjoyed reading your post - what wonderful work you are doing with horses!
My friend's son just completed his Eagle Scout project - a walkway for an animal shelter.
I think helping our animals friends is a special gift.
Please keep us updated on your AN journey.
Sincerely,
Sue
-
Tricia,
Welcome to our group. It seems you have a good grip on things and know what to ask. Remember, you do have the time to gather the information you need and make the decision that is right for you. I wish you well and hope you find what you need here. Don't be afraid to ask those important direct questions of your doctor and if they don't like the questions you ask make note of that as well. Any doctor worthy of the task at hand should not be offended by your questions.
Be well,
Neal
-
Hey, Tricia! It's Cindy (here in Cumming) that you talked with a couple of weeks ago - I've been watching for you...so glad you've joined us! Sounds like you're doing all the right things and approaching this in the best way possible. As you've already seen, there is a wealth of info and wonderful support here. We'll all help in any way we can!
Take care and do call me again if you'd like...our next Atl support meeting won't be til after the first of the year, but I'm thinking about trying to see if some folks would like to get together for lunch in the next month or so. Watch for info and/or call me and we'll just meet up at Chik-fil-A or something!
Cindy
-
Hi, Tricia and welcome to the forum. As you say, it's a great place to be ;D
I didn't find out about the ANA until after my retrosigmoid surgery in May 2007, but always wish I'd known of it when making my treatment decision. All the literature I received from them, the WTT list, and this forum would have made the steps of my AN Journey much less scary and stressful.
Thank God I found them post op - and prior to my BAHA surgery also, which was extremely helpful.
Just my opinion, but if your "gut" didn't give you a good feeling on the doctor you consulted with, please continue to look - my "gut" gave me a great feeling on the first and only doc I consulted with and my outcome was excellent.
Attitude has a lot to do with recovery, so I think it's key to have someone you are confident in and comfortable with - not to mention someone who has the necessary medical training and experience.
Good luck in your decision-making process; it's often one of the hardest part of the journey.
Best,
Jan
-
Hi Tricia
I'm so happy that you found this forum. My best advice is to find a Dr that has extensive AN expirence. Also, listen to that gut of yours! It will not lead you in the wrong direction. Good luck in your decision making process!
Erin
-
Hi Tricia and welcome! Glad you found us!
Sounds like you are doing all the right things - research, worrying (normal!) and most importantly - trusting that gut feeling.
I don't have much input to provide, but plenty of support.
Sounds to me like you have a very full life and I'm sure it will be after treatment too. You seem very motivated to not let this get you down - just a bump in the road!
I have a daughter that turns 7 next week and is crazy about horses - in fact, that is what she asks for every year for her birthday. It's not going to happen this year either, but if you'd like me to send her down by you to help with your therapy - let me know! :D You may need therapy of a different kind after that!
Good luck and welcome to the family.
Lori
-
Hi Tricia,
Another welcome from TX. You have found yourself a great bunch of people and a wonderful source of all kinds of useful info, medical and otherwise. We can translate most "medspeak," advise you what to pack for the hospital if that's what you choose, and prop you up when you are having a bad day....and there will be a few of those. Feel free to ask any and all questions. As you said earlier, "Bring it on!"
Priscilla
-
Tricia,
I welcome all new people through "you," as I'm not always around on the forum to connect individually.
The most important part of your Acoustic Neuroma experience is of course, your decision what journey to take down the road of your attack against this "mystery monster."
Even with the suggestion that Meningitis may be creeping through a vulnerable area and I've lost all my hearing on the right side, I'm so far pleased with my decision of Cyberknife!
I'll address all questions in my Meningitis post, once I have all the answers and have heard back from Stanford.
Keep reading, relaxing, doing ourdoor wilderness sports and connecting with us on the forum.
-
Welcome Trica!!
I love to read, garden, travel, kayak, and ride horses
Did I hear Kayak ??? ..... your alright in my book ;)
-
Welcome Tricia - you have found the right place - amazing support, information and people who REALLY understand what you are going through because we are all doing the same thing..I traveled from NY for surgery at House 5 weeks ago today and am having an amazing recovery so if you have any specific questions about House, please feel free to pm me. I agree that you need to just keep researching, asking questions, and speaking to drs. The right decision and the right doctor will come to you at some point - it will feel right. I also agree that you should explore radiosurgery as an option. It was not the right decision for me but there are so many people here who have chosen it and have been very happy so you should read up on that section too. You have many options (that is the part that will drive you crazy :D)...one will fit for you personally and you will know it when it does because it will feel right to you.
Good luck on this journey!
Cheryl
-
Tricia,
Welcome to another Georgia peach. I am glad you found our group and know you have options other than doctors who don't give you the best feeling in the world. Look forward to meeting you at our next lunch get-together. Let me know if you have any questions for me.
Grace
-
Tricia,
It was very nice meeting you! I live near Tacoma WA and am a military dependent and nurse.
You are on the right track. Never did anyone mention the ANA as support. Come on doctors, get some sympathy going! I joined less than a year ago, after all the fun and games and have met many nice people. (Still having fun and games and continue to learn more and support others too). It's a win/win type of forum.
We help you feel better, you help us feel better by helping you! ???
Had one email buddy who had the same surgery with the same doctor, so that was all I needed.
Anyway anytime you want to vent, this is the place. You must be a fast typer :)
Everything will be OK, you'll see.
Maureen
-
Tricia ~
Hello and welcome! As we always say: we're sorry you have to deal with an acoustic neuroma diagnosis (O.K, technically, a vestibular schwannoma) but we're glad you discovered the ANA website and the forums. Thanks for registering, reading and now, posting your introductory message. I wouldn't be concerned about profundity because your inclusive message was very interesting and more revealing than most 'debut' posts from new members. I appreciated both the medical and personal information that rounded out your introduction. As an inveterate writer of long posts, yours seemed just about the right length. ;)
Tricia, you certainly seem to have a good grasp of the medical issues that accompany an acoustic neuroma diagnosis and your insight into your own emotional reactions is impressive and ring true. I'm sure that you'll be asking those critical questions on your next doctor consultation. I also trust that you'll explore the possibility of irradiation treatment as an alternative to surgery, unless you've already decided on the 'out with you!' approach that many AN patients take when confronted with the unwanted invader.
As others have noted, you seem to have a solid support 'system' in place and enjoy a full life. Although the closest I've ever gotten to a horse is watching 'Mister Ed' reruns, I think the work you do with horses is admirable. I admit to not knowing a kayak from a keel boat but I can appreciate the skill it takes to pilot one and because my fellow moderator, Joe ('Joef') is a veteran Kyaker, they must attract worthy people. :)
Thanks again for posting and your kind words. Please know that not only can you come to these forums anytime for help, information and support but that we eagerly give whatever we can to those who need help in some area and we do so with an understanding that only those who have 'been there' can offer. I'm very pleased to learn that you've already received so much comfort (and information) from reading the forums. I look forward to seeing more of your messages in the weeks to come.
Jim
-
Welcome. I found ANA after my surgery...oh how I wish I had more knowledge before...these forums have been a great support for me and now I'm happy to be able to share and support others.....
Trust your instinct with your doc...they should answer all your questions, even the easy ones. I remember my husband asking how much hair I would lose...at the time I thought why is he asking that, but later I was glad to know the answer. :) (btw-not much and with longer hair it was barely noticable to others)
-
Hi Tricia,
I'm from the Gainesville south of you! (Florida) I am very glad to meet you, although like others I am not happy to meet you in these circumstances. I'm a fairly new poster to this board, having just been diagnosed on October 15th. I look forward to getting to know you better and wish you the best of luck on your AN journey.
Lyn
-
I'll add my welcome to this already long list Tricia! I was diagnosed a couple of months ago and now waiting on middle fossa surgery on dec 9th. You'll start to realize the hardest part is knowing what you want to do. I finally made the decision to go to House after several consults with my local doctors here in Phoenix. Like everyone has said, trust your gut instinct and don't feel pressured into doing something you don't want. Please continue to vent and/or share with all of us your feelings and decisions.
Regards, Jay
-
Hi Tricia and welcome to the forum,
I'm sorry to hear you have an AN but am glad you found us. I think you will find a wealth of information and as you can see, lots of people who are willing to answer questions and offer support. The AN experience is an emotional rollercoaster and finding the right doctors and the right treatment for YOU is what is most important. I don't really know for sure, but I don't think many docs offer up information on ANA. I know I found this forum just by Goggling "Acoustic Neuroma" and I know many others found it the same way, sometimes before treatment and sometimes after. We are here to help and support you however we can. Please feel free to ask any questions and vent when you need to.
Best wishes,
Wendy
-
Hi Tricia, I too was recently diagnosed with a 9mm AN. I have been in the watch and wait mode since June. I think I fell into the "denial" mode and got busy with living and tried to forget about this thing. Since it will soon be 6 months, I have FINALLY started to do more research. I have consulted an neurotologist and a neurosurgeon. Both suggest sugery with a possiblity of radiation. The more I read, the more I wanted to find out about the radiation option because, quite frankly, I am scared to death of brain surgery! I have an appt with a radiation oncologist in Dec. However, a few weeks ago, I started to be less scared. I don't know what it is, but I am learning to live with this condition I guess. Once I have the MRI in January, I will make my decision and get this thing over with. I have read of several people on here who get diagnosed, and deal with it quickly. Something to be said for that.......
At any rate, good luck in your search. I am in NC and have been to Duke U. UNC is also supposed to be a good place to go. Dr. Fukishma would do my surgery if I go this route and he has done over 1200 AN surgeries so I think that would be an experienced person.and feel I will be in good hands.
Pat
-
Hi again to Tricia .....
So glad you are posting and keeping on top of things!
Pat ..... Just want to add that Dr. Fukushima did my surgery 19 months ago and he is fabulous ..... cannot recommend him highly enough if you decide to go that route.
Clarice
-
Pat:
If you decide on radiation treatment, please check out Wake Forest. They are great!!
Grace
-
Hi and welcome to our forum. You will find everything here from advice, suggestions, alternatives and tons of support. Listen, learn and investigate. Write down all your questions so you are prepared . Most of all, like Neal said make sure you are comfortable with your doctors. I knew right away when I met my doctors that they were the right ones. If you don't have that feeling, keep searching. Don't feel rushed, empower yourself with knowledge. Good luck!
-
hey Trisha and welcome. Sorry I'm late for this party but had to stop by to say hi. I see you are down the street, around the corner from CindyJ and the ANA office! :) Weird transplant here... born in Boston, lived on ATL Northside (Dunwoody) for quite a while (graduated from school there), moved back to Boston but my immediate family in Roswell/Alpharetta area. :) Spent much time at the lake and on the river and have fond memories :)
well, as you can see, quite the welcoming committee we have here. I know you aren't thrilled with Piedmont Hosp but I can say that Dr. Maddox at Emory is top notch (based on other's recommendations I've heard) for AN treatment. I believe Kennestone has Cyberknife now and I also hear that they are doing good work (my sister does clinical trials in ATL and had been keeping me updated on this).
Shands is great as well.. and I see others are chiming in BIG time.
Regardless of where and what you choose... know this... we are glad to have you here. We know what it is to "walk in your shoes" (although my feet are rather large)... but most of all, as you have witnessed.... great, great support here!
Again, welcome....
Phyl
-
A warm welcome, Tricia. You've certainly come to the right place for information and support. Reading quickly through the other responses, I didn't catch that anyone had mentioned the ANA pamphlets that are offered. They have a lot of really helpful information, so I'd check them out if you haven't already (and if you become an ANA member, they are free).
You do have a lot of time to figure things out, so make sure you take all the time you need. Things will become clearer as time goes on. Wishing you all the best!
Denise
-
Hello Tricia,
Welcome to this wonderful, caring support group. I thank God that I found them. I was lucky to have met some of these fine people in person recently. Namely, Phyllis, Erin, and Jim Scott. They are extraordinary people with hearts of gold. They are my lifeline as I go through my "an journey." I think it's great that people that were complete strangers offer their support to help other people. They have been there, done that.
I got diagnosed with my "an" on July 22 of this year. Since that time I have researched the heck out of this rare condition and got more than one opinion from the doctors in Boston. I'm not a watch and wait kind of person so I decided to go the surgery route. I want this thing out! My surgery is scheduled for December 28th in Boston at Brigham and Women's with Dr. Peter Black, the chief of neurosurgery there, together with Dr. David Vernick the neurotologist. I am completely confident in my decision and remain positive that it will have a good outcome. I am a very spiritual person, and God will see me through this ordeal. It's a step by step process.
As mentioned here, do your research then go with your gut. It will never steer you wrong. It's something that needs to be dealt with and you will make the right decision. We are here for you.
Gingerbread6
-
Hi all,
I've been posting a little bit in other sections, but just to update (which i've been bad about doing):
I had gamma knife surgery at Shands at Univ of Florida on Dec 1. Thought i would have had surgery, but other health issues complicated the decision. Gamma turned out to be best decision. (The waiting/decision-making was worse than the procedure)
Have had (and am still having) some balance issues...will get a wave of dizziness at unexpected times when i'm standiing up , or especially when i sneeze. But while i sit down, i seem to be fine.
Worried about getting my old job back, since my former work partner will not respond to email requests. Guess i'll have to break down and call her husband, since she wont answer my phone calls. I'd just like the courtesy of knowing if I have a job, or if i have to look for another one. I've talked about this on other posts, but it still hurts that someone who worked so closely with me will not even respond back to me. Maybe she thinks i'm radioactive...who knows..all i can do is laugh and move on. Certainly other people out there will appreciate my virtual assistant (computer) skills.
Dont have to go back for MRI for a year, and Shands couldnt have been more helpful, even tho they are a huge, busy hospital. My only wish is that they would do a better job of their patient information handouts/appointment notification.
Note to anybody searching this forum for info on Shands: ASK EVERY QUESTION YOU CAN THINK OF, EVEN THE OBVIOUS ONES, AND INSIST ON GETTING THINGS WRITTEN DOWN FOR YOU (INCLUDING DATE/TIME/LOCATION OF APPOINTMENTS/NAME OF PERSON WITH WHOM YOU SPEAK, DIRECT LINE TO CALL FOR MORE INFO/CONFIRMATIONS)...IF I HAD NOT BEEN VERY PERSISTENT ON GETTING SOME APPTS/DAYS/TIMES CONFIRMED I WOULD HAVE MISSED MY MRI, WHICH WOULD HAVE CAUSED MY PROCEDURE TO HAVE BEEN DELAYED BY A WEEK...especially if you are travelling in from a distant location...verify, verify, and then verify again.
However, that is the only little gripe i had with them...so overall, a VERY satisfying experience, and I LOVED the fact that the vast majority of their staff has a great sense of humor and friendy nature. In fact, the only crabby/disinterested person was in finance office of MRI, which is not a direct part of neurosurgery.
Happy holidays to all from a toastie postie!!!!
-
Thanks for the update Tricia!
sounds like things went great and good advice to others.
You sound great. Congratulations, and take it easy ???
Easier said than done!
Maureen
-
Tricia ~
Thanks for updating - and congratulations on a successful GK procedure and a good recovery. We've had some members that have done exceptionally well at Shands and I have to assume they run a good operation, albeit with a caveat or two, as your post pointed out. A Merry Christmas and a Happy New Year to you, tostie-postie. :)
Jim