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Archive => Archives => Topic started by: djhorn73 on February 24, 2005, 10:48:06 am

Post by: djhorn73 on February 24, 2005, 10:48:06 am
Hi I am new here... I JUST talked to my Doctor today because I have been having some small headaces and then one day I lost part of my hearing in my right ear and have a loud ringing in my ear. So they told me that I have Acustic Neuroma. And I am just TERRFIFIED because I don't know what it is... or what it can do... or what they do to fix it. I know they said I have to have surgury.... and that scares me even more! I was hopeing they were going to tell me that it was just my sinues.... but they didn't... so now I am REALLY upset today! Anyway... if anyone has any infomration for me... PLEASE fill me in! Thanks!
Title: Re: SCARED
Post by: cecile k on February 24, 2005, 12:00:06 pm
Dear "Scared"

Have you had the diagnosis of Acoustic Neuroma confirmed with an MRI? And if so, do you know the size? There are many many on this message board who have gone the path before you and come through just fine! Relax, research your options and, if you do indeed have an acoustic neuroma, make sure your doctor sends you to the BEST specialist (neurosurgeon/radiosurgeon) there is! That is key here...

I was also very scared when I was told to have an AN. But once you have researched all your options, found the BEST specialist there is to treat it, you will have much more peace of mind. All the very best.

Title: Re: SCARED
Post by: Raydean on February 24, 2005, 12:21:02 pm
You're right this is a scary situation.  But the good news is that these are slow growing  tumors.
This means you have  time to research the options available which include wait and watch,
microsurgery and radiation. If there is a key to this whole AN journey it would be researching and choosing a medical team in whatever option that you choose. that has vast experience in the treatment of AN's.  Both radiation and microsurgery are valuable tools in the treatment of AN's.  It's also important to remember that the vast majority of AN patients that choose treatment have positive outcomes.  The right and best choice is the one that you decide on after researching your options and having consultations  with Doctors in both of the main treatment options.

You might find it helpful to contact the nearest support group.  Sometimes just meeting and talking with someone who has "been there" is greatly reassuring..  Please consider contacting the National
ANA Office in Cummings, Georgia for the contact person for the support group nearest you.

If I can be of help. please feel free to e-mail me.

best to you
Title: Re: SCARED
Post by: Becky on February 24, 2005, 02:39:58 pm
I just want to add to take your time, unless because of the size it is life-threatening.  These are slow growing and benign, and the treatments available do not always get rid of the symptoms.  I know that 1.5cm or less is considered 'small'.  I cannot recall off-hand but I think 3.0cm and larger is considered 'large'.

Research, research and research.  When you are ready for treatment, go with the most experienced surgeons (micro or radio) who are good doctors/care about their patients.  The follow-up is generally the part where too many doctors 'get off' (after the treatment is over).

Good luck;
Title: Re: SCARED
Post by: kristin on February 24, 2005, 06:59:46 pm
hi scared! i feel ya!! i was really hoping my AN was actually my sinuses too..i remember saying those exact words! i'm still pre-op so i'm not sure i can calm your fears, but will tell you that you're not alone..there are many people here who have gone through what you're going through..hope we can help.

Title: Re: SCARED
Post by: djhorn73 on February 25, 2005, 12:01:38 am
I first of all want to thank everyone who has taken the time to post here. I am just still in shock and pretty shaken up! Things were going SOOOO well in our family because my brother JUST got home from Iraq and we were celebrating... then I get this news! But I just got to talk to my brother on the phone for the first time in about a year and he told me.... "If I can make it though everyday and make it out alive with bullets flying past my head on a daily basis.. you can make it though this! I LOVE YOU SIS!" I said "I LOVE YOU TOO!!! THANK YOU!" So I am still terrified.... but I am going to live... and that is the most important thing. I just fear surgery more than ANYTHING in the world!!!! I have had VERY bad experiances with surgery before and so I am SOOOO scared when someone says I have to have sugery! I have a VERY low tolerance for medications and the hospitals don't always take that into consideration and I now suffer from panic attacks on occation (although it was getting better though will power and LOTS of love from my family!) because the hospital had given me "reglin" and I found out I was alergic to it and can't take it! It was AWEFUL to say the least! So anyway... thank you sooo much for your support and information! i am going to try to find that support group in my area.... I am not sure that there is one... but I will look and find out! Thank you for the infomration! My mom is a nurse so she is doing all the research for me. And my husband is also researching for me too. :) I am soooo lucky to have such a WONDERFUL family! Thanks again for all of your help!
Title: Re: SCARED
Post by: kristin on February 25, 2005, 12:44:57 am
hi again. i'm so not a professional or anything and you should obviously take their word over mine, but it sounds to me like you might want to check into radiation /radiosurgery....
Title: Re: SCARED
Post by: Becky on February 25, 2005, 05:30:46 am
AN is rooted in the vestibular portion of the 8th cranial nerve (the nerve bundle for hearing and balance).  I have read a number of medical publications that indicate people with vestibular problems are more prone to panic attacks. 

Title: Re: SCARED
Post by: djhorn73 on February 25, 2005, 09:00:48 am
Wow! I didn't know that this could also be causing my panic attacks! If getting rid of the tumor will get rid of those as well.... then that would be WONDERFUL! I wouldn't wish a panic attack on my worse enemy (If I had one!) They are AWEFUL!
I was also wondering.... I called today to find out how large this thing is because that question seems to keep poping up.... and they said it is a 10x5 mm. tumor... so what does that mean? Is that a large one or a small one? I would like to try to do the surgury that they don't cut you open! Do they still have to put you to sleep? Do you feel anything? does it make you sick? What happends??? Thank you sooo oooooo much everyone for your advice and talking it has helped out SOOO much! I am just so scared so it is nice to talk to people who have been there. :)
Title: Re: SCARED
Post by: Becky on February 25, 2005, 11:17:49 am
I have read that 15mm or less is considered small.  I guess that means the longest dimension.  So, the largest "small" AN would be 15mm x 15mm x 15mm (?)

My diagnosing MRI never mentioned the AN size in terms of volume.  The surgeons who removed my AN never gave the actual dimensions, even tho I asked a number of times.  Maybe some day someone will review those films and tell me ...   

I'm going on 1 year post op on 3/1/05.   :-\
I wish I had waited.  Mine was 13mm (1.3 cm) at time of diagnosis, and I had all options available to me.  Can't change that now. 

Don't be scared.  You are fortunate that you have time.

Title: Re: SCARED
Post by: jsung on February 25, 2005, 07:21:47 pm
Hi Scared:

Acoustic neuroma is a benign form of tumor and grows very slowly.  So you have the time to choose your option.  The hardest part of all this is actually picking the right treatment option for yourself.  I also had months of light-headedness before the actual diagnosis.  When I first got diagnosed back in April, I actually developed anxiety disorder at the same time due to this. 

First of all some background of me, I was diagnosed with a 2cm AN back in April.  I am a 37-year old healthy individual, an engineering director in a communication chip company.  I have 2 young kids (a 5 year-old and a 2-year old).   Instead of quoting all the statistics of my research, I will just give a short summary on why I chose radiation:

- I have visited 3 top neurosurgeons: Dr. Robert Jackler of Stanford (microsurgery); Dr. John Adler of Stanford (Cyberknife radiosurgery), and Dr. Kenneth Ott (Gammaknife radiosurgery).  I found out that I am a primary candidate for all.

- In comparing the side effects of microsurgery and radiosurgery, an overwhelming percentage of microsurgery patients had significant post-surgery effects- be it headaches, loss of balance, facial paralysis, hearing degradation; etc…  Some radiosurgery patients also have side effects, but in general they are much more positive. 

- I have no symptoms of ANs.  Radiosurgery gives the highest probability of hearing and facial nerve preservation.  I will risk both with microsurgery.

- The only concern I have is long-term radiation effect.  There is already 20 years of statistics out there.  The few radiosurgeons I have consulted have not seen a case of malignancy in all of their patients. 

- Being an engineer by trade, I am more eager to accept new technology.   Cyberknife is the newest approach to combine fractionated radiation with much better accuracy (down to  0.5mm).  Dr. Adler at Stanford is also the inventor of this machine.  I feel very comfortable talking to him.  He even invited me to see a patient going through the actual procedure.

- Finally, I am willing to accept the fact that I will have a tumor dying in my head the rest of my life.  I probably have had it for the most part of my life already, so I am comfortable with it.

 As far as the procedure is concerned; I had it done in the first week of September.  The whole thing was painless.  In fact, I took my family to sightseeing in San Francisco after the treatment everyday.  The hardest part of my AN journey was the 4 prior months – trying to choose the right option!  I feel completely normal right now with no symptoms!  My first follow-up MRI will be in 1 week.

Again, this is all my personal opinion.  In no way am I trying to convince you to go to radiation.  Everyone’ situation is different.  Since your tumor is very small, you have plenty of time to sit back and weigh out the pros and cons for each approach.

Feel free to ask any questions.  I am more than happy to share my experience.

Title: Re: SCARED
Post by: iowaboy on March 15, 2005, 05:32:46 pm
I am going in for Middle Cranial fossa next week in Iowa City. I am scared too, but have accepted the fact I need to act and get it while it is small (10mm). I have a great Doc & Clinic so this helps. I really like the forum but it seems there are too many negative posts about this affliction. I am sure there are many that have had very positive results, and wish they posted more. I came here for support but often leave more fearful. I did hear from a wonderful person, here in Iowa, that contacted me about her experiences with AN. Not all the stuff was positive but most was. I am very grateful for her information and have even talked to her on the phone once. We need more people like her in here to help us get over the fear. I think of all the people that have gone through worse, and people that risk their lives everyday, to put this into perspective. One of my best friend's daughter was born w/Downs and had open heart surgery before she was 1 year old. She had another one a few years later. Today, she is nearing her 18th. birthday. I think of stuff like this to help sooth my own nerves. It works for me. I guess what I'm trying to say is look at the positives in your life to combat the stress of the negatives. A few years ago I'm sure the options were few, and I am glad we have modern medicine. What if I lived in a third world country? Man, I AM lucky!  Good luck and my best wishes to you!
Title: Re: SCARED
Post by: rheab on March 17, 2005, 09:09:23 pm
This website is actually the best resource I found for answers to all my questions. There are no rosy outlooks or flowery messages of encouragement. You will be ok. It will take time. If you have surgery, you will get sick and be miserable for a few weeks. You DON"T have cancer. You won't require chemotherapy or if you choose the gamma knife, the radiation is not like the kind that kills malignant tumors. You WILL requre patience, perserverance, good family and spiritual support. You'll still have that awful noise in your deaf ear!  Life will eventually get back to normal, you'll just be deaf in one ear. I wish you luck. Keep reading people's stories on this website. You will gain tons of information-straightforward information. I don't recommend that you rush into surgery if you don't have to. However, if you don't do something, your tumor could eventually press on your brain stem and cause major problems (This could take many, many years, tho).  Mine was pretty close to that when it was discovered. But I am fine now. I'm almost 4 years post op. My doc keeps reminding me that my brain is "plastic" and will return to it's original shape and one day I'll wake up and say, "Hey, I'm not wobbling anymore!" God speed.