ANA Discussion Forum
Archive => Archives => Topic started by: Laura on August 18, 2006, 02:11:16 pm
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I was just diagnosed yesterday and wanted to tell you all that I have found this website, not only informative, but comforting. It really is a wonderful thing to know there are people out there experiencing exactly what I am. Being diagnosed is a lot to digest but reading everything that everyone else has been though helps. I can't say that I'm not completely overwhelmed by it all and a bit taken back but now I feel like I can go into battle with the proper weapons! Thanks to you all and God bless!
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Welcome aboard! Sorry you are joining our exclusive little club. Please know we'll answer any questions you might have!
Now take a deep breath....exhale slowly.....good! You're not alone!!
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Hello lparr and welcome:
I remember how you are feeling right now so very well. It has been two years and five months since I found out I had a tumor. It does get better after the shock wears off.
Everyone here will ask you how big your tumor is so I might as well get that over with.
If you have any questions, fire away. Kathy
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Hi Lparr,
I'm impressed you have already found us!
Sorry you are going thru this, but keep posting!!
Would you tell us all aabout you when you feel like it?
Pattibobatti
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;D Thanks for the warm welcome!
About myself... My name is Laura; I'm 33, married with a 10 month old. I have noticed intermittent hearing loss for the past two years. After having my PCP repeatedly tell me I had fluid behind my eardrum and giving me meds and dismissing me I decided to make an appointment with an ENT doctor. THANK GOODNESS I DID! Unfortunately, my ENT doctor isn't all that familiar with AN as this is the 17th case he has seen in 15 years. He didn't have a lot of insight to offer and didn't tell me the size except that it is relatively small. He suggested, due to my age and the fact that I've only lost 30% hearing in my right ear, that I have the surgery. He is referring me to a doctor that has seen 1000's of AN's. I'm not sure of this doctor's name but he is located at MVC (Medical College of VA) and my appointment isn't until October. I'm trying to absorb as much information as possible between now and then. I do understand that this is a slow process and sometimes I feel like I can wait until October to meet with the specialist but other times I just want answers NOW. Can someone give me a "generic" time frame? After I see the specialist, when can I except things to get moving; I would very much like to know the size of this thing? Will I be normal again (not that I'm exactly normal now ;)) and be able to do the things I do now like play volleyball? I would like another child before my daughter gets much older; is this a reality? What kind of recovery will I be looking at if I get the surgery? ??? ??? ???
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Welcome Laura! Time frame all depends on the size of it and how your body responds. Unfortunately, it's very hard to predict. It's pretty much all an unknown until you have the surgery, then it still sends some surprizes your way. The thing a lot of us talk about is that it really makes you stop and smell the roses. Let us know the size and we can let you know more.
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Welcome Laura to our very elite club. :)
Call your ENT and ask him how big the tumor is, he can make a good guess. If you want to see the specialist sooner than call and ask for an appointment. Be insistent.
Will you be normal again? Yes, but a new normal. You should be able to do everything you do now and there are lots of women on these boards who have gone on to have more children after An surgery. If I remember correctly one mom had a baby a year after surgery.
Good luck to you and keep reading and posting.
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Morning Laura:
Small is good.  It gives you time to make a decision.  I met with a surgeon and a radiologist to discuss both options.  My tumor was too close to the brainstem for radiation to be an option......so surgery it was.
If your appt. is not until Oct. with the surgeon maybe you should try to get an appt. with a radiologist before that.  Hopefully after both meetings (and some time to absorb it all) you can make your decision upon their recomendations.
I'm sure many radiation people will chime in about their experiences.  I can tell you that if you have surgery you will need help with your little one for quite a while.  You won't be able to lift or do much of anything for at least a month post-op and you will want to sleep/rest all the time.  AN surgery recovery is very slow but progress happens daily.  If you are not having balance problems yet,  you will after surgery.  Your good side will need to compensate and that takes time.  I was lucky in that respect as my tumor was so large that my good side vestibular nerve had taken over many months before surgery.
Physically I am as good as before surgery only I am deaf in one ear and my balance is bad in the dark.  I do have trouble multi-tasking otherwise, my brain works just fine.
Best of luck to you,  Kathy
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Hi Laura and Welcome;
I presume you have had your MRI? You can request a copy of it if you want. The MRI report should have the size of your AN on it. Maybe your specialist want's to go over that with you first, tho. I had Gamma Knife, others on here have had CyberKnife and FSR. My AN was 2.0 cm, right in the medium sized catagory and it wasn't located so as to be immediatly dangerous to me. (Location, location, location!) Fortunately for me, my neurosurgeon recommended GK as my best option. He told me that treatment of AN's vary regionally and with each doctor, also. I saw my neurosurgeon the same day the neurologist called and told me what the verdict was after I had my MRI, so I didn't have months to wait on that. I was diagnosed March 13, and had my GK on April 18. I did have to wait nearly 2 months to get into see the neurologist, and that was a long wait for me, as I knew something was wrong but didn't know what. Like most people on here, I'd never even heard of an Acoustic Neuroma before. After the stunned shock subsided, I was very glad that I finally knew what was wrong with me, and that there would be some resolution to this problem. A friend called me, and said...well are you back to normal now? And I said, well, I have a "new normal". And that's so true. I am lucky that I don' t have the severe problems with balance. I fully expect to live out the rest of my life with tinnitus, hearing loss and facial numbness* (the symptom that finally got me into the neurolgist!), and darn glad it isn't any worse than that! *This affects the skin only, by the way. The hearing loss is permanent, but my doctor is hopefull that the facial thing will get better and maybe the tinnitus. That would be wonderful, but I'm not holding my breath!! If your AN is indeed in the "small" catagory, then you have lots of time to look at your options. Your doctor might even put you in a "watch and wait" mode, where they just look at your MRI's for a year or two or more to see what your particular "bugger" is up to. Ask him about your plans for a baby. The only thing I can think of that would be a problem is if you have really bad balance issues and are dizzy or if you end up with really bad headaches. As far as I know that's the only thing that people have said that interfers with doing what they want to do. That might make caring for a baby kind of tricky. You had your child when you didn't even know you had an AN, but you did. You did fine then, so I don't know what difference it would make now...except that you KNOW it's there now and that makes a difference with your MIND!! It really is a "Mind over matter" thing...with matter being our AN's. It takes a bit of doing to accept that we have this thing in our head. Mostly because it is hard to push our symptoms into the background. My tinnitus and facial nerve problem is always telling me I have an AN. But, Laura, we always tell people that there are many, many people who have had AN's and done their surgery or radiation and check in here maybe a few times, and then go on their merry way because they have returned to "Active Duty" and are out enjoying their life and don't bother to report back to this forum. My only advise, if I may be so bold, is to remember that you have 3 choices..."watch and wait", radiation, and surgery. In my humble opinion, make sure your doctor is open minded enough to give you a balanced look at all three options. Surgeons make a living at being a surgeon and might not be so keen to send you over to the stereotactic radiation team. And vice versa! So arm yourself with information and ask a zillion questions. We hope that our doctors have the best interest of the patient, and I believe that most of them do...but doctors are people too and they have to make a living. In the end, your instincts might well guide you to the best treatment for you. And the confidence that you feel in your doctor helps a lot too. Good luck to you and I hope your journey goes well. Let us know how you are doing. Every story is a bit different and the telling of it always helps somebody else. Sorry this is so long, but I didn't have time for a short note!! (somebody wrote that to me and I thought it was funny..)
vANcouver Sue
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lparr:
Hi...and welcome to our 'club'.
As others have already stated, you'll need to obtain more information in order to have some of your general questions answered here. For specific medical information relative to your 'case', you'll need to consult a physician. You - and any neurosurgeon or radiologist - certainly need an MRI in order to determine the exact size of the AN tumor. If it's small enough, non-invasive radiation treatment may be a valid option for you. If not, you'll need surgery, which requires hospitalization and a longer recovery period but is also quite common and effective in removing AN tumors, as many here can affirm, myself included.
I'm now some 10 weeks post-op AN surgery (retrosigmoid approach) and practically back to normal, in terms of living my life the way I used to, prior to the symptoms of my Acoustic Neuroma infringing on it and driving me to the doctor, various labs, neurosurgeon consultations, the hospital - and surgery. AN's come in many sizes and both surgery and/or radiation treatments come with some strange side-effects...and occasionally with no side effects at all. It's a very individualized medical problem, as the many messages you'll see on this board, proves.
This site is also an excellent source of information. There are many useful AN-related sites on the internet. I've visited almost all of them, as I wanted to know as much as possible about what I had as soon as I found out that I had it. That information won't change your diagnosis, but knowledge does give us all a feeling of having some sort of control over our lives and helps us to make informed health-related decisions. You'll may have to be making these kinds of decisions, soon.
Here's some information for you: If your AN tumor is small (under 3cm),: non-invasive radiation 'surgery'may be an option. The MRI scan will answer this question. Surgery is only for larger tumors, as a neurosurgeon will tell you. AN surgical recovery is generally close to 2 months, sometimes more - and sometrmes less. Post-op, regaining your balance is always a challenge, but possible. I did....well, almost. Whatever percentage of hearing you lose is usually gone forever - but not always - and there are sophisticated hearing aid devices that some folks use to compensate nicely. Strenuous physical activity may be off-limits for some time - but not permanently. Once you consult with a neurosurgeon (who will - very likely -request an MRI before he sees you) he will set a surgery date, if that is what is required. If the tumor is small enough to be removable via radiation, he will probably refer you to a radiolgy oncologist. If the tumor is very small, he may even suggest a 'watch-and-wait' scenario, meaning that you basically do nothing and have bi-annual MRI scans to 'watch' the AN and see if it grows. Many grow very slowly, stopping for years while occasionally they grow at a near-exponential rate. Every AN tumor is different in some way. There simply is no 'generic' Acoustic Neuroma.
To amplify what others have already suggested: obtain as much valid information as possible prior to your consultation and ask as many questions as you feel you need to in order to become comfortable with the doctor and whatever course you decide to take. From my (successful) experience, I suggest you attempt to select a neurosurgeon with much AN removal experience. Some neurosurgeons are better versed in spinal surgery than brain surgery. I found one that did both - but - had 30 years of AN removal experience and was probably the best in my state, according to the hospital nurses and other doctors I spoke to. In any case, always remember that AN surgery (if you need to go that route) is serious - but the tumor is almost always benign (they'll do a biopsy post-op) and, best of all, it's operable. While AN's (as we call them) can be a minefield, most AN patients usually regain their health over time and live productive lives. I'm on my way to being one of them, and Laura, I have 30 years on you. :)
Although I very much want to put this experience behind me, I still post here occasionally to encourage others and show that an AN (mine was relatively huge) is not 'the end of the world'. You can not only survive this but, in time, probably get back to 'normal'. I'm now doing just that. So will you.
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Hi Laura,
Glad you found the AN board so soon, it is really good to bounce things off others here and vent sometimes too!
I recommend you do a lot of research and homework about your tumor and the options prior to coming to any decisions. If your tumor is small, you should have time on your side along with more options. I'm still searching for the right decision regarding surgery or radiation, where, when ,etc., and my choices seem to change with each doctor I meet! ??? So, make sure you gets feedback from different docs that are non-biased if possible!
best wishes, melinda
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;D Thanks to everyone for your insight, thoughts, suggestions, and support!
After searching the internet and reviewing what an AN looks like on an MRI, I did pull out my MRI films and took a close look. I did find the "beast" but, unlike most of you, my beast appears to have little bark! To my untrained eye it appears to be a little less than 1 CM. My doctor did say it was small and after hearing how large these things can get, I feel blessed. I will keep posting/reading/visiting here regardless of which of the three options I choose. I pray that God leads me to make the best decision for myself and my family. I pray the same for all of you!
I think I have been though a few of the "phases" as I've been shocked :o, angry >:(, compeltely upset :'(, but now I'm ready to get in the game and fight ;)! This is a wonderful group of unselfish caring people - I am very blessed to have found you all! Best of luck to everyone and God bless!
Many thanks,
Laura ;D
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Laura: Yup you'll have another child, if you want, it's the timing that matters. My son was born about 8 years after my orginal tumor was removed, when he was two months old I found out that I had a regrowth. I stayed in the "watch and wait" mode for this tiny regrowth for 6 years (and apparently it was known to be there by my doctor even the year before I was told so that's 7 years and who know's how long it had been there as it was seen on my first MRI post-op from the orginal surgery). Over the years it was monitored it grew very little, something like a mm or two each year. When I finally had it out it was only done for my peace of mind, medically it did not have to be removed yet (was still confined to the auditory canal).
If I had been given the choice I would have had it removed before I ever had any children, just to make the entire thing less worrisome and my removery less "hurried" but I wasn't and I am glad I waited those years and went ahead and had my second child before having it treated.
Kathleen
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Wow :o - I just received a call from the specialist, Dr. Sismanis at VCU/MCV in Richmond VA. He will be out of town for a month so he has moved up my appointment and wants to see me TOMORROW. Talk about fast - I just found out about this thing last Thursday. I've had a complete thirst for knowledge since then and regarless of how much I learn, I want to know more. I guess tomorrow will reveal all the answers but am SCARED to dealth of what he will say. I know I don't want to "watch and wait", it's just not my style and I'm so afraid that he is going to tell me this is what I need to do. UGH! Decisions, decisions, decisions.... sorry I just had to vent and get it off my chest. Thanks for listening (reading).
Laura
Deep breath in, release... deep breath in, release :)
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Please let us know!!! Hang in there!!!! I know what you mean about watch and wait...I hoped not to go that route either. I didn't have that choice, mine was too big. DO take the time you will have to make the best decision for YOU. Don't rush into something you will regret.
I'll be on tomorrow looking for your post!!!
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Laura--this thing is entirely in your hands, m'dear. No one can tell you what you "need to do" as this decision is up to you. That is why this forum is so imprtant as it empowers us,the patient, to make an informed decision as to what is the best "fit." Generally speaking--if you consult a surgeon, you will get "have surgery" as your answer and the same is true of a radiosurgeon, you'll get a "have CK or GK or FSR" Pretty confusing isn't it?
Make a notebook, write stuff down and do your research and if possible get seen by several specialists in the different treatment options.
You are very fortunate to have found the little beast while it's still tiny.
Capt Deb 8)
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HI,
Anxious to hear your news! Let us know when it's a good time for you.
Pattibobatti
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Welcome Laura! Sorry you had to join us here, but thank goodness this forum is here. It certainly helped me get through 2 surgeries. I am 30 and have a 4 month old, so I can relate a bit to your situation. Please let me know if I can do anything to help you along the way!
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I was in Richmond yesterday and met with Dr. Sismanis, the Head of Otolaryngology at MCV (Medical College of VA) as well as his Neurosurgeon counterpart, Dr. Bullock. Both took their time and answered ALL my questions. I didn’t feel like a bother and I didn’t feel like they were trying to rush out of the room; they were both very helpful and informative. I received wonderful news as the tumor is small (1cm) and is not endangering the brainstem. Both Dr. Sismanis and Dr. Bullock strongly encouraged the “watch and wait� approach and much to my surprise, I have decided to follow their advice. This will mean that another MRI is required in 6 months with another 6 months after that to track the growth of the AN. Dr. Sismanis has estimated that I have had this tumor for at least 5 to 6 years so there is really no need to rush into any decisions. Time is a wonderful, valuable gift! Chances are that eventually the surgery will need to be performed as to avoid other complications that you all know so well; but we believe this to be years down the road. I will need to plan a course of action if/when the tumor reaches a size of 2cm or I notice increased hearing loss or other symptoms. As for now, I have only 30% hearing loss in the right ear and have a little tinnitus. All in all this has been a reality check but I can most definitely say this is a blessing and that it’s something I can live with. Thanks to you all for your thoughts, prayers, and support. I will continue posting and reading, as this site has proved invaluable to me during this time.
Laura
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Laura,
I was given the watch and wait option for my similarly sized tumor, but I decided to go ahead with treatment for a variety of reasons. 1. I didn't want to lose any more hearing--down to about 50 % 2. I was having headaches. 3. I had a lot of ear fullness feeling that was diving me nuts. 4.
psychologically--the idea of the thing just being there was more than I could handle. 5. It was winter! In 6 months, it would be summer, and spending the summer laid up, if that's what was going to happen, was not an appealing thought. If none of those are issues for you, then w/w seems to be the best fit.
Good Luck on you AN journey and keep us posted
Capt Deb 8)
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Hi Laura,
Yes, that is a blessing !!!The fact that you can live with it is also a blessing... We are all so different- I wanted that thing out the minute I found out. Now you can relax a while and start feeling better. GOOD FOR YOU!!!!!!!!!
Pattibobatti
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Thanks everyone! I did think that I would want it out immediately as well but with the doctors report and my agenda for having another child before my 10 month old gets too much older, I think this is the best way to go. Although neither doctor had encountered someone asking them about pregnancy/AN's, both doctors seemed to think it would be better to move forward with another pregnancy now instead of after surgery. Yee-ha, let the baby making commence! LOL
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I was diagnosed when my second child was 4 months old, and we weren't/aren't sure about having more, so I also quizzed and double-quizzed my docs about pregnancy/ANs! I also quizzed them heavily about possible links between all the extra estrogen during pregnancy and the rate of AN growth (since I woke up one morning halfway through my pregnancy with 80% sudden hearing loss). Unfortunately, there's little conclusive evidence one way or the other about the effect of estrogen and other hormones on ANs. I also wonder since I have a "fast-growing" AN (based on 3 consecutive MRIs) and I've been either pregnant or lactating since 2001, except for a 6 month break before my second pregnancy. Makes one go Hmmmmm.....
In any case, last fall my neuro-ENT told me that if another pregnancy caused rapid growth, they'd just do surgery shortly after I had the baby. This made me want to pre-emptively remove it for many reasons:
1) Immediately post-partum is not an optimal time for any kind of surgery. Can you imagine?
2) I tend to get post-partum depression for several months - again, not a good time for major surgery!
3) I wasn't willing to risk my ability to nurse a baby b/c of meds/hospital stay/recovery from surgery. But that's my own "thing".
BUT... my AN is already starting to press on the brain stem, so further growth would start to get into big problems. (In May, after the 3rd MRI, I was told to "please avoid another pregnancy" until the sucker came out.) It sounds like you're in a very different situation with your AN, which is a good thing. I just wanted to share that I'm at a similar life stage, and what I was thinking about, and how I made my decision. Maybe it'll give you ideas of some more questions to ask your docs if you want.
Katie
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Katie,
Sept. is coming up fast. I'll be calling you soon! Jody - my girlfriend - and I will be visiting you at MGH!!! Just think, by the time we have the brunch, it will all be behind you!
I'm off to see Dr. McKenna tomorrow morning......
Paul
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lParr:
Good news Laura - and, if you can easily live with your symptoms, then you have certainly made the right choice.
My neurosurgeon told me that my 4.5cm tumor had probably been 'in there' for 10 or 15 years before giving me symptoms that I could not ignore. One caution about waiting, even with a semi-annual MRI: AN's have been known to have growth spurts so down the road (most likely at an inopportune time) you may have to make a relatively quick decision about surgery. So, at each scheduled MRI session, be mentally prepared for that possibility. Otherwise, enjoy your life and be thankful, as I know you are, for 'small favors' - and small AN's. ;)
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Jim, thanks I will take your advice and heed your warning. I would like to get my little one at least walking before I move forward with any thoughts on surgery. I'm 33 and would LOVE one more child so I hope the AN will take a backseat and let me have my way :D. 4.5cm is quite large!!!! Isn't is hard to believe that something like that can be lurking for 10-15 years and you never even know it.
Katie, you have just given me a lot of food for thought - thank you! I did a quick google search of AN's during pregnancy and you are correct in the fact that there isn't much out there. But the few articles that were seems to think that the tumor grew at a faster pace while pregnant. I will approach this with my OBGYN if/when the Lord so blesses me. I completely understand where you are coming from and agree that I want to be completely healthly and able to care for my children in all ways a mother should. I wish you well in your surgery; I will say an extra special prayer for you that day - from one mother to another!
Laura
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Laura,
type in "pregnancy" into the search bar just below your pic on the title page and you will find a few previoes references to others whove had pregnancy issues and how they dealt with it. I seem to remember a thread or two about it.
Capt Deb