ANA Discussion Forum
General Category => AN Issues => Topic started by: Sammict on April 26, 2008, 03:13:36 pm
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Hi everyone
I have been reading some of your post since my diagnosis in March. I finally got the nerve to sign in.
I have a left side 1.1cm AN I am currently waiting on a surgery date. My doctors are Dr Perkins and Dr Lange out of ST Frances in Hartford CT. My symptoms are Left side hearing loss some facial and tongue numbness and my left eye dries out at night when sleeping.My doctors have chosen Translab procedure since i have no useful hearing left.
I'm afraid of what's ahead. I have two children in there twenties and a four year old i've been married for 24 years my family has been very supportive.
Any words of wisdom anyone might want to share about whats to come.
Sam in CT
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Hi Sam!
Welcome! I know that all of this is so overwhelming right now, but soon it will be over and you will be getting on with your life!! If you have been reading here, you know that this is a very supportive group. If you have any questions...feel free to ask us. If you like, you can check out my blog (address below) and see what life is like for me after 12 years -- I have a great life! (However, I'm having a bit of a rough spot w/ another surgery I had right now!)
K
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Hi, Sam:
Welcome to the forums.
As I usually say: I'm sorry you have a reason to visit here (an acoustic neuroma diagnosis) but I'm glad you found the site and the message boards. We're not doctors but we can offer support and practical advice. This website is chock full of very useful information, too, besides just the message boards. Explore it. You may be surprised.
It sounds as if you have things well in hand at this point, with a procedure, a surgical team and facility all chosen as well as a surgery date. Please let us know your date for surgery and put it on the calendar we have to keep track of these things, or ask the moderator to do it for you, if necessary. Here's the link: http://my.calendars.net/AN_Treatments (http://my.calendars.net/AN_Treatments).
Of course you're scared, as we all are when first confronted with the diagnosis of a brain tumor. That is a natural reaction, although an acoustic neuroma isn't actually in the brain...but its close enough! Your symptoms are quite typical, as much as anything is 'typical' when it comes to AN's. Although your hearing will be lost permanently on the left (AN) side, I've found it quite possible to cope with that, although it does take some adjusting and compromising. I 'miss' things on occasion and in a noisy environment, it gets tough, but this is surmountable. There are aids you can buy (not 'regular' hearing aids) that can help, too. I haven't, but others have and like the results, so that is a possibility.
The surgery can take quite awhile (mine ran almost 9 hours, but I had a big AN). You'll be out of it (from the anesthesia, mostly) immediately following your surgery and you'll very likely be in ICU. You'll 'come around' within a day or two and, if you're anything like me, be anxious to be released and get home. I was in the hospital for 4½ days. Once home, you'll be a bit lethargic but that will wane fairly quickly, especially with a four-year-old around. :) Your balance will be 'off' and you'll need to take it slow for awhile. Figure a six-week recovery period. Some need longer but some, much less. Most AN patients that don't have complications are back to work within 2 to 3 weeks. I was driving (with my doctors permission) less than two weeks after I left the hospital. You may have a similar experience, but that is pure speculation. I certainly hope you do. :)
As you may have read here, they only shave a small strip of hair for the surgical incision so that won't be a big hassle. Some post-op patients develop problems but most are temporary and are resolved within a few weeks. The overall recovery is long-term. I was good within a month of my surgery but I'm much better today, almost two years out. It's a very gradual change. My balance is very good now, compared to a few weeks post-op when I was still struggling to 'get back to normal'. I didn't develop any CSF leaks, headaches or other complications, thank God. The majority of AN post-operative patients don't, but there are no guarantees. Cognitive issues may arise. They should be fairly short-term but can be maddening. I still get 'dry eye' when very tired but a few OTC eye drops fix that, when necessary. You'll see the phrase "everyone is different' and that's because it's true and needs to be taken into account when we're stating what you may expect, post-op. I had an excellent recovery but some other folks have struggled. Your experience will undoubtedly not be exactly like mine or anyone else's, but I trust it will go well.
One thing I strongly suggest is that you have an advocate while visiting doctors and, especially, when you're in the hospital. My wife accompanied me on every single doctor visit pre-op, stayed in the hospital (she slept in the nurses lounge or in a chair next to my bed) and was my support and my advocate all the way. My adult son was also supportive in terms of encouraging me by talking about things we would do as soon as I was able. He meant it, too. We were out playing mini-golf a few weeks afttre my surgery!
I trust that your doctors are well-experienced with acoustic neuroma surgery, as my doctor was. That is crucial to a good outcome, as you would expect. Because AN's are relatively rare, not all neurosurgeons are that familiar with them. Since your AN is quite small (as acoustic neuromas go) I'm curious as to why you decided on surgery over radiation, which is effective and non-invasive. I'm not questioning your choice, as AN treatment is a very personal decision and I do respect yours, but I'm just somewhat curious.
If you checked my signature and/or my profile, you'll see that I'm from Connecticut, too. I live just outside of Litchfield. I had Dr. Issac Goodrich of New Haven as my neurosurgeon. My surgery and subsequent radiation (FSR) were performed at the Hospital of Saint Raphael in New Haven (June, 2006). Dr. Goodrich is a superb surgeon; caring, compassionate and very experienced operating on acoustic neuromas (30+ years). He teamed with Dr. Johnathan Haas, a radiation oncologist, now practicing on Long Island, to 'map' my FSR treatments. Obviously, both the surgery and radiation were successful. I wish you the same kind of experience.
My only 'words of wisdom' - summed up - are to be proactive with your doctors (respectfully, of course), have an advocate (preferably your spouse, if possible) and be determined to do well in every aspect. Don't just 'think positive'...be positive. While an acoustic neuroma is a bit daunting, it is benign (not cancerous), you won't die and best of all, it's treatable. Many people have gotten through this, Sam, and quite a few are posting right here. You'll get through it, too.
You have friends here and we hope you'll become a part of our 'family'. We care and just as importantly, we understand because we've been there (or are there, or will be there in a few cases). Try to stay calm and retain a sense of humor when you can. It helps, believe me. Of course, you can always come here to vent, ask questions, whatever. Don't be a stranger. :)
Jim
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Hi Sam and welcome. I'm glad you are now posting and sharing with us.... and know that we are here to help as best as we can. I can see the "welcoming committee" ;) has given you proper welcomes and hoping that the info you are reading here is of help.
I can share that next Sunday (May 4), there is a brunch in Worcester, MA... many of us from all over New England will be in attendance... those that have had surgery... or radio-treatment, or both (Hi Jim Scott!) ...... here is a link for the brunch:
http://anausa.org/forum/index.php?topic=3561.195
In my opinion, there truly is nothing like meeting others, face to face, that walk in the same shoes. If you are interested in attending, we'd love to have you come join us... there is plenty of room. Jim (and his wife) as well as JoeF (our other site Moderator) are all coming in from CT, so, it may be worth a thought.....
I'm glad your decision for treatment has been made... that should be a monkey off your back... so, know that we will be cheering you on.... and remain here to help along the way.
Again, good to see you here,
Phyl
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I want to thank everyone for thier words of wisdom it helps so much reading about so many success stories.
I decided on surgery because I just want it out. I have a really good doctor. My husband and I have faith he will see me through this.
My doctors are pushing for surgery in the next few months. My hearing has gotten worse .
the doctors beleive there is a strong possibility it's growing. i've been told better to remove it while it's small.
I have been struggling with many symptoms for about a year now i am relieved to know it wasn't just in my head. (Ha Ha )
I have trouble talking about it in front of kids because I don't want to upset them I was so glad to find this web site.
thank you everyone I will keep you posted on whats to come.
Sam
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Hi, Sam -
It's nice to meet you ;D
I don't really have much to add to what Jim said; he covered most of the "highlights" and probably said it better than I could have!
I personally can relate to your decision to have your AN removed - that was one of the reasons I chose surgery. I had retrosigmoid almost one year ago and my only lasting side-effect is SSD. I recently had BAHA surgery to help me with that, so all in all, I'm doing great.
Having a really good doctor that you and your husband have faith in is a definitely plus. In addition, you'll find that the support of your family will also be invaluable. Make sure you ask the twenty year olds to help out with the four year old post op. You'll be busy healing and you'll also be tired from the anesthesia and the effects of the surgery on your body.
I'm glad you found us :)
Jan
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Jim did help out so much he answered so many unawered questions I had. Hopefully i will be able to do the same for someone someday.
At the moment my doctors are waiting for a hole in my eardrum to heal before scheduling surgery. I had a tube placed in my ear
prior to finding out about the AN.
My little one starts kindergarten in the fall I want to have surgery early enough so that I can be there for her when she starts school.
it's been really great talking to everyone.
Thank you Phyl for the invite to brunch but I have a wedding to attend that day. Please keep in mind for the future.
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Hey there Sammi !! sorry I am late in welcoming you ! I was away on vacation last week !
what town are you hailing from in CT ? .. I'm in Shelton ...
I would highly recommand attending the next lunch.. soming has come up for me too - so I wont be there , its always a good time!
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hi Joef
I am from Windsor Locks CT. Thank you for the warm welcome hope you had a great vacation
Hopefully i will be availbe to attend the next lunch.
Sam
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Hi Sam,
I was diagnosed in February and have finally decided on surgery (in just 12 days!?!?!?!!!!!!?!? :o
This is not an easy thing to share with those we love and who love us. I have only cried twice telling people... the first time was telling my hubbie (the first to know), and the last time was telling the ladies at my babe's day care today that i would have to take her out for a few months since i am surgery for a brain tumor! Then i burst into tears! Crazy... I have been so strong.
Anyway, my point is that it's not an easy thing to talk about, but in 2 months i have come to accept this fate and am hopeful for a happy ending to this sad story. It's great that you signed on here finally as i am sure you will find much needed help and support.
I hope you can find the strength and peace you need to see you through this tough time.
Trish
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Trish,
You will be fine. I understand the nerves and the fright of the unknown. You have a husband that loves you and your beautiful daughter and the prospects of a new baby once you are ready. This is a little detour on the road of life. I'm a big sucky baby also, I cry a the drop of a dime. I too have been holding all together, BUT there are moments when its like a dam. Four weeks ago tonight I was manic because of the steroids and I literally flipped on my husband. My 19 yr old son was in tears. He had no idea the pain and emotions I've been battling. My husband was also frightened. He was afraid I was really losing it. Since that night I've been off work with a note from GP.
Yes we are dealing with a "Brain Tumour" and it is always in the front and central in my mind. Only a select few, like our friends on this forum can actually understand what we are going through. Lean on your husband and your family, they will be there for you. We are all here for you also.
PM me with your phone # I don't pay for long distance, I'm here and would love to talk to you. Someone on this forum reached out to me and she was my lifesaver. Windsong, you are deeply missed.
Take care Trish,
Anne Marie
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Hi Trish
I know how you feel. I find it hard when i'm alone it's all i think about and I break down. Since finding this website whenever i feel like that I go back a read all the wonderful success stories. I can't wait to have all behind me soon.
I wish you the best I will be praying for you. You are going to be just fine you will be writing about your success story soon for all of us to read.
Sam