ANA Discussion Forum
General Category => AN Issues => Topic started by: Monnie on February 01, 2008, 06:57:13 am
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Hello! I am writing this to introduce myself as a new member of the club! I am a 40 year old Navy wife and mother of three. I was recently diagnosed with a 3cm AN. I hadn't heard of an AN before my diagnosis. Prior to the MRI, I was constantly being treated for fluid in my ear. I kept telling the doctor about numbness in my face and they never seemed concerned. I have had numbness on the AN side for years. It wasn't until last summer that I lost the hearing in my right ear and I have tinnitus that seems to be getting worse. Poor balance is also an issue. The specialist told me about this site and I am eager to get to know other people and have so many questions. I am confident in the doctors that will be taking care of me. So far, I have been told because of the size of the AN and my age, I will most likely be a candidate for trans labyrinthine. I was wondering what to expect after the surgery. I'd appreciate any information and look forward to meeting others that have gone through or will be going through what I am.
Thanks,
Monica
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Hello,
I am sorry to have to say welcome on here. However, as a newly diagnosed and sudden SSD sufferer all of which has happened within nearly 4 short weeks (and not dealing too well with the shock of it all either along with the tinnitus - oh dear!), I can tell you the people on here are wonderfully supportive and friendly. It is a great source of information but make sure you find the threads with positive outcomes of surgery too in order to get some balance. My AN is currently 10mm, small but deadly as I didn't have hardly any prior symptons.
I am not going to be a good wait and watcher as I am 44, also have 3 children, and feel I want to deal with this and move on with my life.
How have you found coping with the SSD? Are you in the US? Where ever you are there seems to be a problem with getting the symptoms initially recognised by the medics.
Take care
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Hi, Monica and welcome to our club.
It sounds like you are in the hands of some good doctors and your confidence in them will make things easier for you. I'm not surprised that they are suggesting surgery; for an AN your size, radiation isn't usually the norm. There are mostly likely others on this forum who have used the same doctors you are seeing and can give you some insight on them if you'd like.
There are lots of posts that talk about surgery, possible side effects, what to expect, etc., - you can find a lot of it by just poking around in different areas and reading the various posts. Or you can look for something specific by using the search feature. I know a lot of newbies get discouraged or scared by some of the things they read on this forum, so keep in mind that everyone's surgical experience is different and someone else's story won't necessarily be your story.
If you haven't already, you should contact the ANA and request the literature they have about ANs - it's very helpful.
Jan
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I am not going to be a good wait and watcher as I am 44, also have 3 children, and feel I want to deal with this and move on with my life.
Esperanza -
not to get off topic here, but if you aren't comfortable with watching and waiting, then why are you? Your AN is considered small, but that usually doesn't mean you aren't a candidate for radiation or surgery. Have you discussed one of these options with your doctors?
I am 46 and have 2 children. I had my surgery about 8 months ago when I was 45. Although my AN was larger than yours, and watching and waiting wasn't really a reasonable option in my case, I too wanted to deal with it and move on - and I did through surgery.
In a few months I am having BAHA surgery to solve some of the issues I have from SSD, which is another part of my resolve to move on.
If you aren't happy watching and waiting, you should investigate other possibilities,
Jan
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>> I hadn't heard of an AN before my diagnosis.
the same with all of us!!!
>> The specialist told me about this site and I am eager to get to know other people
really!! :o good for him !!! lucky for you!! most of us just were just lucky from "googling" and ended up here
Where are you? we have people from all over the US (and overseas) ... and have East and West coast lunches!!
Trans-lab (as we call it).. normally is used for the larger tumors or when the hearing is not worth saving.. as the inner ear is removed.... but... that gives the doctors the best view of the tumor.. and the best chance of removing the whole thing ....
Take a deep breath ! even at a larger size , you have time -- tumors normally grow very slow -- research here get other opinions -- send MRI copies to other doctors (doctors will give free "estimates") .. and remember -- your not alone -- we have all been there and done that --- but most of all --- welcome!!!!
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Thank you all for responding so quickly and for the warm welcome. Sorry to be meeting under such circumstances! I am located in the Harrisburg, Pennsylvania area and see specialists that are affiliated with Penn State Hershey Medical Center.
I'm still learning how to get around on these message boards (I'm very inexperienced!) and on the site to read more. I have searched on-line and can't seem to find some of the answers I am looking for. One question being: after trans-lab, will I still have tinnitus? I think I will be able to deal with the loss of hearing after surgery, but the tinnitus is what bothers me the most. Some days, I feel like I could scream! Along with the noise of the television and the noise of five people in the house (none of us are quiet talkers), I find some times the noise is overwhelming and causes me to be extremely confused.
My ENT was surprised that the AN wasn't found earlier. I blame that on being in a military family. We move frequently so I don't get to know a particular doctor long enough for them to know my history and to see any significant changes. We lived in Germany prior to PA and the military clinic was very small. Once we moved here, after many visits with the military doctor and things getting worse, I asked if I could go off base and be seen by a specialist. That is when the AN was diagnosed.
So, one of my questions is, will the tinnitus be present after surgery? Oh, and also, is anyone from the Central Pennsylvania area?
Monica
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Hi, Monnie:
I'm sorry you have a reason to be here (a diagnosis of an acoustic neuroma tumor) but glad you found this site and forum pages. I think you'll find us helpful. :)
There is a lot of AN information here and elsewhere on the internet. Just type 'acoustic neuroma' into a search engine and you'll get quite a few pages of website links. Frankly, I believe this site is the best and these forums, populated by folks who either have or had an acoustic neuroma, are invaluable . We go beyond the clinical aspects of having an AN and help provide more practical information, especially helpful to the newly diagnosed, like you.
'Trans Lab' is a common surgical procedure used to remove an acoustic neuroma tumor. It is generally very successful. However, the hard truth is that any AN case is always a minefield, of sorts. Any doctor will tell you that this kind of delicate surgery carries some degree of risk. The risks are relatively small, but they do exist. After all, the surgeon is drilling into your skull and removing what is often a 'sticky' substance that is sometimes wrapped around vital nerves. You certainly need to have confidence in your doctors and know that they have the experience and skill to perform this operation successfully, which includes a minimum of post-op complications. Many of the posters here - including me - have undergone AN surgery and experienced a successful outcome. We encourage you to read our stories for support.
To answer your question regarding tinnitus: frankly, you'll very likely continue to have tinnitus even after surgery, as most post-op AN patients do. It may subside a bit, but it rarely disappears. However, imbalance issues usually do go away, although sometimes you need some therapy to get back to normal. In any case, recovery from AN surgery, even an easy recovery, is measured in weeks, not days and sometime in months. The good news is that you will recover and that what you have - an acoustic neuroma tumor - is benign and treatable.
We stand ready to answer what questions we can and to offer support and advice if you need or want it. :)
Jim
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Monica -
Welcome from a fellow Navy Wife. I blame my 15 years to get a diagnosis on the military healthcare systerm too - so you're not alone there. I had always been treated for sinus infections, given the standard sudafed and motrin and sent on my way. It wasn't until we got orders to Nashville and I had to see a civilian doctor that I finally got a diagnosis.
That said, I hope you are able to find the information you need. This is great site for that - because I think you'll learn a lot more from people that have gone through it than anyone else.
I had translab also - coming up on a year ago this month - and I'm doing well. Still some minor issues, but all in all, I feel good and have learned to adjust some things to get to a new sort of normal. I've always been very energetic - probably to the extreme - so chances are there were some things that needed adjustment anyway! ;)
Good luck on your search for information and let me know if I can help in any way. Who knows, maybe we'll be stationed at the same place someday!
Lori
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I think I will be able to deal with the loss of hearing after surgery, but the tinnitus is what bothers me the most. Some days, I feel like I could scream!
I feel exactly the same, just wish it could be switched off - not sure if mine is more linked to the feeling of pressure - still feel I have a plug or something in my ear that needs to be pulled out! I know this constant feeling/noise causes the biggest problem with my day to day quality of life.
Glad you are on your way to getting some treatment now.
If you aren't happy watching and waiting, you should investigate other possibilities,
Jan
You are right, thanks. I am going back to see the local ENT specialist to chat things through.
Take care all.
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Hi Monica,
I am fairly new to this "club" too. I also am in the process of meeting with various docs. I live in Maryland (about 1 1/2 hrs from Hershey) I am meeting with docs at Johns Hopkins and University of Maryland in Baltimore. If you want any info on them, I'd be glad to share it with you. I have 2 kids and am 39 years old. Lots of questions!!
Hope
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MONNIE AND MY NEW AN FRIENDS,
GOODMORNING TO ALL OF YOU! ;) I AM TAMMI, SO NICE TO MEET YOU!! I AM 7 WEEKS POST OP NOW AND DOING GREAT! I UNDERWENT A 2.8 CM AN SURGERY OF 15 1/2 HRS. I WENT INTO THIS SURGERY VERY POSITIVE AND HAD LOTS OF FAITH IN GOD MY DRS AND MYSELF! I WAS AS PREPARED AS I COULD BE FOR THIS SURGERY. I READ LOTS OF INFORMATION, BUT NEVER KNEW ANYONE THAT HAD BEEN THROUGH IT.(I WISHED I HAD KNOWN ABOUT THIS SITE) MONNIE, WHAT YOU ARE HEARING FROM EVERYONE HERE IS TRUE, BUT HOW YOU HEAL IS DIFFERENT. WE ARE ALL DIFFERENT! KNOW YOUR DR. WELL(ASK LOTS OF QUESTIONS THATS A MISTAKE ALOT OF PEOPLE MAKE ) SO THEY ARE REALLY SURPRISED AFTER THE SURGERY! AN SURGERY IS NOT THE END OF THE WORLD! STAY POSITIVE AND TALK TO ALL OF US HERE , WE UNDERSTAND! GOOD LUCK WITH YOUR JOURNEY, SOMETHING GOOD WILL COME OUT OF THIS!!! ;)
I HAVE NOT READ ANY POSTINGS ON NEUROMUSCULAR FACIAL RETRANING.. HAS ANYONE HEARD OF THIS? I HAVE AN APPT. THIS WEEK WITH A PHYSICAL THERAPIST THAT SPECIALIZES IN THIS AREA OF THERAPY. YOU CAN GOOGLE THIS AND GET INFORMATION ON WHO IN YOUR AREA SPECIALIZES IN THIS. THERE IS A CLINIC IN ATLANTA, GA. CALLED ATLANTA EAR CLINIC. A WOMAN BY THE NAME GAYE W. CRONIN OTD. OTR. SPECIALIZES IN FACIAL RETRAINING AND SUPPOSE TO BE GREAT WITH AWESOME SUCESS!! GOOGLE HER !
I HAVE BEEN TRULY BLESSED BY ALL OF YOU HERE. I LOOK FORWARD TO A CONTINUED SPEEDY
RECOVERY WITH ALL OF YOU HERE TO TALK TO THAT CAN REALLY RELATE!!! ;)
TAMMI
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Hi, Tammi:
I just wanted to add my voice to the welcoming chorus. :)
I appreciate and share your optimism and trust that the neuromusclar facial retraining you're seeking will prove successful. As AN patients, pre or post-op, we certainly can relate and hope you'll keep bringing your enthusiasm to these forums.
Jim
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Monica-
I live in the central part of the state, unfortunately it's NJ. I'm sending you a note that I also sent this AM to another person in CA, if you have any questions don't hesitate to contact me.
Joe-
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JIM,
THANK YOU SO MUCH!!! ;)
TAMMI
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Hi Monnie et al! When speaking with Stanford about cyber knife radiation- they told me the largest they had treated was a 3.6 CM tumor- so while size is a consideration, there are also other factors: age, position, balance issues or not, that kind of thing. So just another option to consider in your research- good luck. Annie
Faith40/Tammi- glad to hear you are doing so well post surgery! we need to hear success stories like your's.
Take care all- Annie
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I never did like military Dr's. I spent 15 years in the Navy and never had a pleasant experience with them. I to had issues, not with my AN but others and went to a civilian Dr for treatment. Keep your head up and be strong, things will work out.
Mark ( Shipmate )
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THANX ANNIE!!! ;) ;)
I HAVE SO MUCH TO BE THANKFUL FOR!!!!
TAMMI ;)
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Monnie,
My name is Dann. I live in York, PA (about 25 miles south of Harrisburg). I was originally diagnosed in early 2006, waited and watched for a year, then underwent stereotactic radiotherapy (radiation) at Johns Hopkins in Baltimore in June 2007. I chose radiation over surgery to avoid all of the risks and recovery from surgery.
You are not alone in dealing with anxiety related to the ringing and hearing loss. If I think too much about what I have lost (significant hearing on my left side) or what I cannot escape (the ringing), I become depressed and scared. There have been times when I've felt like stopping my car and running, or I jump up out of bed at night and have to go outside to catch my breath, because I feel trapped in a kind of hell.
A lot has been written about anxiety, and I recommend that you learn as much as you can about that subject. Here are some tools that work for me:
1. I practice cultivating a positive state of mind. When I "water the seeds" of negative thoughts (about hearing loss or ringing) by indulging, or dwelling on, those thoughts it eventually leads to depression or an anxiety attack. When I ignore those thoughts or replace them with positive thoughts, I can avoid the depression and anxiety. For me this really works. But it takes practice. When I was getting started with this, and even now when times are hard, it really helps to have an MP3 player loaded with uplifting music or a motivational speaker.
2. I let go of the past and stopped worrying about the future. Thinking about--longing for--the way things used to be is like holding onto a poisonous snake. Worrying about the future is to die a thousand deaths. I've been a lot healthier spiritually since I began practicing this.
3. I don't hate my schwannoma. I don't hate what it has done to me. I'm not going to spend my energy on hating it. In fact, with the perspective of two years I have to admit that my shwanno has been one of the most deeply humanizing experiences of my life. I've become much more compassionate because of it. I've learned a lot about myself and about others. I've become a lot more spiritual than I used to be, which itelf has lead to a lot of healing.
4. Get good medical advice. It is amazing how uplifting good advice can be.
My wish for you is to find much comfort in this AN community (which I just recently discovered myself--I wish I had found it years ago).
Your AN buddy in York, PA
Dann
3.
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Well... let me chime in here. My name is Mike and I had a 5cmx5cm on the right side a year ago. I had facial numbness on the right side and my walking became a real sense of adventure over the years prior. Finally I decided to quit playing dumb and went and had it checked out. Enter - the discovery of AN ! To make a very long story short.. I checked out everyone everywhere! My brother is on staff at MD Anderson in Houston. So I naturally figured that I would go there. However I had a nagging question in the back of my head?
If these things are as rare as I am being told.... how many have you guys operated on? How many do you see in a single year? The answer? NOT MANY!! Under 10 per year.
Here is the question that you need to ask your doctors... no matter if it offends them or not! How many of these things have YOU PERSONALLY worked on and what has been the success rate of those procedures?
This question needs to be asked of every doctor that will be working on you. Do not settle for statistics of what the hospital has seen... you want to know how many AN's the doctor that is going to work on you has done!
If your answer turns out like mine (not too many) you need to do ONE THING! and ONE THING ONLY!! that is to call...
Dr. Derald Brackman at the House Ear Institute in Los Angeles. He is one of the premier Neurotologists in the world. The House Ear Institute (Dr. John House) is the one that pioneerd many of the procedures that everyone else uese. Dr. Brackman is the BEST there is at treating Acoustic Neuromas. There is also a Neurosurgeon there named Dr. Schwartz He is an Ivy League graduate and works on as many AN's as Dr. Brackman.
The House Ear Institute and Dr. Brackman perform HUNDREDS of these surgeries every year. When I was there I met people from all over the world that have come to the BEST in the world. Dr. Brackman is the highest doctor in the organization. CALL HIM!!! Before you do anything else.
I am not knocking anyone's doctor. I am just saying that your head and your brain is the only one you have. Regardless of friendships, relationships or advice... you need to check up on who's going to be working on you.
I made the choice to travel from Tennessee to Los Angeles and it was truly worth it. I was given a very negative diagnosis by my local Neurosurgeon. He told me...
1. I would loose the motor function on the right side of my face.
2. I would need weights in both eye lids.
3. I would not be able to speak for a long time.
4. I would not be able to eat right away.
5. I would not be able to walk for upwards to 6 months.
6. I would loose the hearing in my right ear.
and a whole slew of other life changing stuff..... so.... I prepared myself for the worst. I decided at that point to go to Dr. Brackman. He told me that yes those are all possibilities however, they were the best and I stood the best chance of making a good recovery. So I went there.
My surgery lasted almost 16 hours. They did a Trans Lab procedure so I did loose the hearing in my right ear. When I woke up... NOTHING! I had zero of those other side effects that I was told I would have. My face is fine, my balance is fine and I had no isssues whatsoever... other than the hearing being gone on that side.
I did howver have a CSF (Cerebral Spinal Fluid) leak. They warned me about this.. however it was not where they said it would most likely be. Usually its either leaking from your nose or your ear. Mine was leaking out around the BAHA site. I got a BAHA implant at the same time. The SF leak was no fun.. but a week later I was out of the hospital again and on my way home.
I insisted that they allow me to video tape my entire ordeal. So I taped everything from my getting on the plane to LA, hearing tests, consultations, pre-op, and even in the operating room and then recovery. I had them tape the procedure through the microscope as well. Why? So I can share what Ive been through with those who come after me. I have shared my story with hundreds of people as I am now a public speaker. If you would like a copy I would be happy to send you one. Just call and let me know.
Its been a year post op and I can honestly tell you that those who do not know me cannot tell that I had such a procedure done. Those who do say that they forget about it until I say " HUH? I cant hear you on that side".
So... I said all of that to say this. I know that you are really freaked out right now and you have a right to be. Having something growing inside your head is a scary prospect. BUT!!! and this is a great BIG BUT!! You have time and you do HAVE OPTIONS!! I have read some of the other posts on here and it is obvious that we all heal differently. Bottom line is that you need to remember that ALL !!! DECISIONS ARE YOURS!! Who you use? Where You Go? everything!
You will be ok. Its scary now but you will be ok.
This is my opinion and take it for what its worth..... I am not sure what your spiritual back ground is. BUT!!! If you are a follower of Christ... it will help you a great deal to just "Give the AN to Him". Tell Him that this is no longer your problem and that it is now His problem to deal with.
I say that not because you need Gods help to get rid of this thing.... but because you will be given a profound sense of peace. When I gave my tumor to God I was overcome by the most profound sense of peace that I have ever felt ! Im not saying that I was not scared to death... no! I am saying that God reminded me that it was going to be ok because not only did I belong to Him... so did that tumor. Sure I prayed that God would somehow remove the tumor via some sort of miracle... but I didnt really expect that. Still was wanted that though! Rather I prayed that whatever the outcome.. that God would use me as an example to others in that God is in control all the time.
I have a BAHA and can tell you about that experience as well.
Sincerely,
G. Michael Smith
(edited as personal info, such as phone numbers, should not be posted for security purposes. Please PM the original poster here on this site for further info. Phyl)
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Hi Monica
Welcome. I'm a newcomer as well. My translab surgery for a 1.5cm was December 3, 2007. From my own experience I found the surgery and the immediate recovery to be a lot easier than I had thought. But I wasn't prepared with the patience for the rest. I would read the section on this board about pos-operative care -- not to scare you away -- but to prepare you for reality. In my pre-surgery counciling, a lot of the downside was glossed over. Facial palsy was listed at about a 5% chance -- the odds sounded pretty good and even then, right after the surgery the surgeons told me that my recovery would take no more than two months. It's going on three. I'm an actor -- the palsy doesn't work. You are fortunate to have been told about this group. I found out by accident after the fact. I have noticed that any question that seems to be posed on the board, someone has input or direction. And as far as the tinnitus, from my experience and from I've heard, AN surgery does not get rid of it. Mine is still with me. Best wishes. David
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Hi Monica~
I have told many people this, but I had a large tumor removed 12 years ago by translab. I do have many "leftovers" from the surgery but I am here to say that I have a WONDERFUL life now. It took me a while to recover to where I am now -- for many reasons - one getting pregnant (doubt you'll have that!!) -- but I couldn't really ask for a better quality of life. Of course, I think a positive attitude is the key!! :o) I would love to chat more with you if you are interested -- just PM me and we can exchange phone numbers, e-mail, or whatever. I also have a blog.
Good Luck,
K
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THANX ANNIE!!!! I AM DOING BETTER EVERYDAY THANK GOD!!! ;)
TAMMI
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Hello all,
My name is Leslie and I live in southern NH. I was diagnosed with a right-sided 2.8cm AN after an MRI to rule out MS discovered the tumor in Nov 2007. I had no hearing issues but had balance issues that I attributed to other factors (fibromyalgia, weight, age). My new primary recommended the MRI since my previous primary of 25 years would have just shrugged it off. Sometimes brand new is better! The wife of a friend was diagnosed with AN the previous summer so I knew a little about the subject. I immediately went onto this website and viewed my options. I had made the decision to have the surgery before even meeting with the neurosurgeon because I needed things to be in place...my daughter, a freshman in college, was leaving in the middle of January; I work in a public school and needed to be able to utilize my sicktime in the most adventageous way. I had the surgery on 1/2/08 and I feel like it was pretty textbook based on the information that I had...8 hours of surgery, 1.5 days in ICU and 4 days on the floor before discharge home. No facial paralysis but total hearing loss!
I have had migraines for 30 years so the headaches have not been so horrible...I am still working on my balance issues and the exercises to improve it. I am just now beginning to grieve the loss of my hearing an it is hitting me much harder than I ever thought it would. I find myself second-guessing whether I made the right decision to go under the knife rather than have the radiation. I gave myself no time to think about what I was going to do. This was actually a good thing since as the surgery date got closer, I was scared to death and I couldn't talk to anyone about it because I did not want my family to be as scared as I was, even though they were.
I return to work in 10 days and know that I have to be much more aware of my surroundings as well as strategic placement of myself for optimal hearing.
I thank you all for this website and how welcome you make people feel. I have never written a posting or belonged to a discussion group before this. Reading the postings and getting information has been extremely helpful and I know I will be a frequent member.
Leslie
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Leslie~
Hello and Welcome! I know that you will be a great asset to this Forum! It is very hard losing your hearing -- quite an adjustment at first, but you get used to it after a while. There are so many different devices out there now that help. I didn't do anything after I had mine b/c there weren't as many or they weren't "fine tuned" then (12 years ago), but I know most do have something and I am sure would help support and inform you if you decide to go that route.
Let me know if I can help you in any way or just be a listening ear -- I definitely can share, long term, how it has been for me!
K
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Leslie,
I think for me, the hearing loss has been the hardest. I don't think it was until I allowed myself to get mad about it that I started to feel better. I had always kept telling myself that I should just be thankful I'm alive and well and not complain about losing hearing in one ear. People have much worse than that, right, so I had no right to be mad. But I was mad - I don't know who I was mad at - but I wasn't happy about it - and I kept it all inside. Then finally one day it all came gushing out - I was sick of missing half of every conversation, I was sick of avoiding social situations that I used to enjoy because I couldn't hear, so what was the point in going? I was sick of having to ask people to repeat themselves. I was sick of losing my kids in the house because I couldn't tell what room they were in. After I got that all out, I felt a lot better! I guess it's like any other loss - you have to allow yourself to grieve over it before you can move on.
I don't envy you having to go back into the school system so soon, but we seem to have a lot of teachers on this forum and they seem to have done well. I know in time you'll adjust to the new you.
Good luck to you.
Lori
p.s. I used to live in upstate NY and used to go to southern NH alot! It's so beautiful up there!