ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: BRS89 on April 14, 2011, 11:00:06 pm
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Greetings. I am glad you are here, but not how you got here. I have spent the past 6 days reading just about everything written on this message board. There are some truly amazing people who are willing to help newbies over and over again as they come to grips with the tornado that was a tumor diagnosis. Now, I am one.
42 years old, with a loving wife, and Dennis the Menace full throttle 5 year old son. I coach little league football (7 seasons) and I am very active. It took basically from July of last year until the MRI last Thursday to reveal a 1cm AN. Test at the Otolaryngologist showed I had 35-40% hearing loss in my right ear and 40% balance lost on my right side, but my brain was working and correcting it to 100%. That would explain why I can still play trampoline football with my son and also explain why I am so fatigued all the time. Brain working overtime.
Now, in terms of AN, mine is a phase one baby. I have high pitched tinnitus that is bothersome, and the hearing part takes constant vigilance, but so far, other than fatigue, I am ok but mentally freaked out it happened. (Like every single person this happens to).
Now, because of size, I could do any of the big 3. WW, surgery, radiation.
The way I am figuring it is this.
1) These things don't improve with age. Any upward growth does more damage not less. Watch and Wait. Not likely.
2) I am 100% insured and have the full support of a great work environment to do what I need to do. Take advantage of good situations when you have them, for they don't always last.
3) Radiation has no appeal to me at my age or for that matter any age. I have lots of reasons, add the myths or take them out, but no radiation beams to the head.
4) Surgery. I will be honest. The recovery phase seems horrible. Just flat out horrible. And CFS and the other side effects. Scary, scary. But, I want it out. Not anywhere but out. Out as in Not in. I think trying to keep my hearing is a nice goal, and would like the two options in surgery that do that.
So, I know people of great wisdom here say, take your time, think this through, and I just feel I know what I should do now. Not because of arrogance, but knowing myself as I do, this seems like the only choice that fits me. And I know it now.
Now, I spoke with Dr. Ricardo Cristobal, MD, PhD here in Fort Worth. Seems experienced, thoughtful, and able. Is he the guy for me? Not sure, but if anyone has any experience in the DFW Texas area, please let me know.
I hope I am not sounding like I am just reacting without thinking. That's all I have been doing. But this AN is like an unwanted guest who is eating all my chocolate ice cream without asking and I want him out of the house.
In closing, I want to thank so many people for taking the time to write about their experiences and feelings dealing with this strange affliction. It was such a relief to find it amongst the large amounts of internet trash floating around.
All the best,
Brandon
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Hi, Brandon and welcome! Sounds like you have a very good grasp on things! Don't have much time - heading out to an exercise class - but, wanted to say that the recovery from surgery is not always horrible. Some folks get through it w/ flying colors at record speed. Yes, a few do have quite a horrible time...but CSF leaks are VERY rare, facial weakness is (these days) usually temporary, if it even occurs. Yes, getting adjusted to the new you, with only one balance nerve, can take a bit of time, but it can be done (again, some take longer than others). I was back on the tennis courts w/in 8 weeks - many others here were training for marathons and such pretty quickly :D Yes, everyone's experience is different, and those first three days post op really are a bit rough, I will admit.
Anyway, I know others will be along w/ more details for you (we have several TX people here). In the meantime, I wish you the best and please hang around and keep us updated.
Cindy
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Hi, Brandon,
Just wanted to add my agreement with Cindy (previous post) that the recovery phase from AN surgery is not necessarily a horrible experience. It sounds as though you're in good shape and that your brain is compensating for your affected balance nerve -- those are two factors in your favor. I am one of the ones whose "first three days" after surgery weren't bad at all, and I'm sure you've noticed from reading on the forum that this sort of speedy recovery isn't all that unusual. That being said, there are no hard and fast rules for our AN journeys.
One thing you may want to consider is sending a CD of your MRI, along with your audiology report, to House Clinic in Los Angeles for a free phone consultation. The doctor who contacts you will give you an excellent second opinion ... and there's no obligation to have your surgery performed there. Here's the link:
http://www.houseearclinic.com/consultation/acousticneuroma
Best wishes as you continue your research!
Catherine (JerseyGirl2)
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Hi Brandon and welcome to this forum of caring, supportive, new friends .....
Cindy and Catherine have given you excellent advice so I will not repeat. I do not live in Texas, but several on the forum do so hopefully they will be along soon.
If you have not already done so, send for the free informational brochures from the ANA. See: http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=3&Itemid=159 They contain a wealth of information to assist you in this very troublesome decision-making phase. There is also a list of questions to ask doctors. See: http://www.anausa.org/index.php?option=com_content&view=article&id=118&Itemid=116
Many thoughts and prayers.
Clarice
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Hi, Brandon ~
Please accept my welcome - and regrets that you've been diagnosed with an acoustic neuroma. The good news is that these tumors are almost always benign and treatable (surgery/radiation). The bad news is that, as my neurosurgeon put it : "it's not the tumor that's the problem, it's the location". Surrounded by cranial nerves making the AN difficult to surgically excise without doing damage to those delicate, crucial nerves. However, as many post-op AN surgical patients can attest: it can be done successfully. I'm one of those folks.
Because you've decided against radiation - which is absolutely your prerogative and a decision we respect - I'll get right to the issue of AN surgery, which I've experienced. My neurosurgeon 'debulked' my large (4.5 cm) AN, effectively peeling it down to a thin membrane and cutting off it's blood supply. That reduced it to half it's original size. My symptoms disappeared, immediately. Three months later, in a pre-planned procedure, my neurosurgeon teamed with a talented radiation oncologist to 'map' 26 'doses' of low-level, very specifically targeted radiation ('FSR') to destroy the remaining tumor's DNA. I'm pleased to report that I suffered no ill effects from the 9-hour surgery, was released from the hospital in 5 days and recovered fairly rapidly. The radiation, delivered over 5 weeks on a Monday through Friday schedule (about 40 minutes for each 'session') was tedious but uneventful and again, I did not experience any negative effects at all from it. I should add that I was 63 years old at the time (2006) and in good health (but hardly 'athletic'). I'm not an anomaly. There are other members who had a similar experience and I trust some of them will be posting to this thread, soon.
I live in Connecticut and cannot offer any information on Doctor Christolbal but, again, I expect some of our Texas members may be able to help advise you about using this doctor.
I appreciate your generous words about the ANA website and I hope the discussion forums will continue to be an asset in your quest to rid yourself of your AN. We're here to help.
Jim
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Thank you everyone. I do not see bitterness or anger in anyone here, and I am sure the positive attitudes help tremendously in these situations.
I do have one question. Many have referenced the place in LA as being one if not, the best in the world.
How do you travel after being released from the hospital? It seems flying would be difficult at that early stage.
Thanks,
Brandon
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Quick reply, Brandon. I am flying out to House Ear Institute in LA on May 7th (from Washington, D.C.), surgery is May 11th, they said it was OK to make reservations to fly back home on May 23rd. They also said if I had complications, they have the forms to fill out to give to the airlines to push back a return home date, if needed.
Hope that helps.
Clarice
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How do you travel after being released from the hospital? It seems flying would be difficult at that early stage.
Brandon,
Ten days post-surgery is the standard time for patients to fly after surgery at House. That's what I did and had absolutely no problem flying from Los Angeles back to the East Coast (Newark, NJ). My husband and I did upgrade to first class for the return flight and it was definitely worth it -- no waiting in the first-class security check-in at LAX and the extra room and quieter atmosphere in first class made for a much more relaxing and restful flight.
Catherine (JerseyGirl 2)
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Hey, again, Brandon...ditto what JerseyGirl2 (Catherine) said...no problems flying post op and no problems about follow up either. One year MRI taken locally and results sent to House for review. Dr. Friedman called me said all was fine and nothing further needed for 5 years :)
cindy
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Hi Brandon.
I wish you luck and I appreciate your "get that f..... out of my head now" attitude.
Your determination will be of great help during recovery, as long as you don't push yourself to hard.
Kenneth
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I went to House in LA after 3 months of research. I am fine. I was able to fly 10 days after surgery ( I stayed at the Seton Guest House next to the hospital) it was 65$ a night. My husband and I walked to the hospital cafeteria for meals. I live in South Florida. The flight was 6 hours with a lay over on the way home. I wish I had paid for a first class ticket back home. I just wanted some more room. I had no more headache about 8 days after surgery. The fatigue after surgery lingered for almost a year. I would be Happy to speak to you via phone or email. you can contact me directly at adon3340@yahoo.com. I am 41, with 2 children..4 years and 2 1/2.
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Hi Brandon and welcome. Glad you found us!
Sounds to me like you've given this some thought and that you have a pretty good gut instinct about what is right for you. That's a good thing.
I was also one who did not have a horrible recovery period after my surgery. The day I came home from the hospital, we stopped at the pharmacy for prescriptions and I didn't want to wait in the car, so I went in and walked around while I waited. I walked slowly and holding onto my husband's arm, but I felt well enough to be out and about. I really didn't have any days when I felt awful, just tired and a little air-headed from the anesthesia! Hopefully, you will have an uneventful recovery too. I'm sure having a 5 year old son will help you get back into the swing of things quickly - if you want to or not! ;)
Many people have had good experiences in LA, but just know that there are excellent hospitals all over the country. If you are not comfortable traveling to LA or are unable to, don't feel like you have to settle for a second-rate facility. I was not willing to travel that far because I have little ones at home and I know how I am - I would have been stressed being away from them and I really just wanted to be able to sleep in my own bed when I got discharged from the hospital.. Fortunately, I had an excellent hospital and treatment team right in my own back yard. So, shop around and trust that gut instinct.
Good luck with your search for information. Your sense of humor will serve you well along this journey!
Lori
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I just now really seeing this - I think I must have read it in the hospital in a morphine induced haze because it sounds familiar! I am in TEXAS - in Houston now but previosly in Amarillo. I don't know of a lot of people in the DFW area but do know a couple. I will sent out a note to a couple on FB to see who they used.
Please feel free to PM me if you'd like to chat more!
I'll let you know what I find out!
K ;D
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Hi Brandon and welcome to the Forum.
Sounds like you've made your treatment choice - usually one of the hardest steps to take. One of my big reasons for choosing surgery was just wanting the damn thing out of my head, so I can relate to your thoughts.
AN surgery isn't pretty - it's major surgery, not to mention brain surgery - but it's not as horrendous as you'd think. The first few days are definitely very tough, but usually things get better from there. There are lots of potential scary side efffects, but everyone is different and you may not encounter some of the side effects you fear. For example, I never had a CSF leak; I did wind up SSD (single-side deaf).
I'm one of those who stayed local (Illinois) for my surgery and I am extremely happy that I did as I can't even imagine getting on a plane so soon post op. That's just my two cents worth though.
You'll usually find qualified, highly experienced doctors in your area - check out the doctor Patrick (texsooner) used; I believe his name is Vrabic.
Best,
Jan
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OK - I have heard back from one girl - she used Mickey/Roland - she highly recommended at least talking to them. I could probably put the two of you in contact, if you would like. Roland was definitely the DFW name that I'd heard before. There several dr's in the Houston area - the main that come to mind (but I think don't work together) are Chang & Vrabec...
K :D
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Hi Brandon,
Any chance you could make it to Cincinnati for the AN symposium? Since yours is small, like mine, you have the time to wait and get all the information you can. That seems to be the perfect place and time to do that. The hosting docs are the ones I am choosing to take care of mine when the time comes, but I am "all ears" ;D for any information that might change my mind.
Whatever you decide, best wishes to you. All of this thinking and learning and worrying is not easy.
Barb
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Thanks all.
I am on work travel and doubt I could make the symposium, but I met with Dr. Tom Ellis here this morning in Fort Worth. I was really impressed. He spent an unusually long time talking to me and I felt from a fundamental level how professional he was and I was relieved at the real data he had to questions I posed.
The moment he said that "if it were me, I would wait and watch to see what it is doing" impressed me. He gets paid to do surgeries and taking money out of his pocket to give me true, professional medical advice was a breath of fresh air.
So, we have a baseline MRI from April. We are going to take another one in late July. This, at least, will tell us if it is growing fast or not. This is a good thing. I can enjoy my son's 5th birthday party and my 10th wedding anniversary without being on my back recovering.
If it wasn't for my high pitched tinnitus, I would be ok day to day. I am having difficulty with it, and wonder if it is a lifetime sentence.
So, I went from - Surgery NOW - to watch and wait. But, if that little bugger has grown a mm in 3 months, sharpen the knife doc, cause your going in!
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Hi Brandon,
Those were the words that changed my direction also. Like you I was a get it outta here type, but then I saw 2 teams of docs; 1 wanted to get it out NOW, (wanted the surgery for his stats?) the other 3 said, "If in my head....I'd wait and see what it does..." Yes, a breath of fresh air for sure! I gave it 6 months, had zero growth, and the next one will be 9 months after that, on June 1.
The tinnitus is the hard part for me also. Mine is not high pitched, but a constant roar, motor like, and I believe it to be for the duration. But, do you notice it all the time, really? When you read or are really into thinking about something, do you fight it? 100% of the time? I finally have realized that I don't. I love quiet. I love to read and garden in my quiet times and wondered if I would ever hear "quiet" again, and I do! I get so involved that I do not hear the noise. Maybe it has happened over time, but there is hope, I think, for you also. Not that it will go away, but that you will not hear it all the time. I am not a doctor...just my thoughts!
Good luck to you! Put it out of your thoughts until July, enjoy life, then in July, think positive things. I read once "Worry is the mind's misuse of creativity." Good thought, eh?
Barb
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Brandon ~
Observation ('watch-and-wait') appears to be a reasonable course to take at this juncture. Of course, I hope the tumor remains 'stable' and your tinnitus subsides. Please keeps us updated. Thanks.
Here's my contribution to thoughts about worrying, from William Ralph Inge (1860-1954). Inge was British. An interesting fellow. A divinity professor at Cambridge and Dean of St. Paul's Cathedral in London, among other accomplishments.
"Worry is interest paid on trouble before it comes due". I like it.
Jim
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I agree with Barb. I was diagnosed in July of last year, had ZERO symptoms. The AN (nicknamed Justin Bieber, because we just want it to go away) was discovered in an routine MRI for the optic glioma on my left side (see signature below)
I started with really mild, occasional tinnitus in November, but it has become almost constant since then. It is a buzzing. sometimes low pitched, sometimes a higher pitch. I have found that sometimes it is "tuned out" if I am super busy, so I'd agree that, though it may be there 100% of the time, I am not aware of it 100% of the time. I also find that if I eat or drink something with lots of sugar or caffeine, the noise is louder.
I have been told by two doctors that listening to music or white noise for 1/2 hour a day can help. My surgeon suggested buying noise canceling headphones and listening to classical music, and my doctor at the NF clinic prefers listening to white noise in the AN ear only. I've tried the classical music route, though I admit I have not been consistent every day. I'm going to give the white noise method a try now.
~Leslie
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Tinnitus is a life sentence. But you get used to it. Caffeine and stress upset mine really bad.
I'm a whole year of having tinnitus and six months out of surgery.
It did make me want to cry at first. But there is NO pain involved. Its just annoying is all. When I had partial hearing. I found using ear buds mp3 player would help. The background noise would get my mind off the ringing. I'm hearing the ringing right now as I type. Its all in the mind. Just focus on something else and you won't notice it.
Here is some nice information about tinnitus.
http://discovermagazine.com/2010/oct/26-ringing-in-the-ears-goes-much-deeper
Captian Kirk has it too.
http://www.youtube.com/watch?v=E7bL9BhESYA
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Hello Brandon!! Sorry I haven't welcomed you earlier but I am just finally getting to all the posts from this last month. It looks like you've been giving a lot of good advice so I'll just simply welcome you and wish you good luck!!
Jay
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Hi Brandon
I have replied to your thread because I wanted to share that when I was diagnosed in 2008 I thought I wanted it out but the doctors did encourage me to W&W and now I am glad i did. It took me awhile to get used to it but now nearly 3 years later I am scheduled for surgery next week because I have developed major balance issues. What I really wanted to say is that until now after developing the balance issues I didn't really appreciate just how well I was. I have enjoyed life since diagnosis eventhough I have hearing loss and tinnitus. I have had no recorded growth since diagnosis and if I had not developed the balance issues I would be quite happy to go for the next few years W&W. I visited my surgeon the other day and he shared some statistics about his AN patients. He mentioned to me that it is now uncommon for him to operate on patients with small AN's, he has 400 patients in W&W and of those 35 were operated on for tumour growth and 3 because they had developed balance issues; I thought that was pretty amazing with surgery accounting for only 10%. The decision is a personal one and what you decide will be right for you. Good luck in your journey.
Kimbo
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I am in Houston and Vrabec works with Trask. Great team!
Priscilla