Just Diagnosed!

[BusyBonnie]

Hello everyone,

 I am a newbie and noticed how supportive evryone is here! I had sudden hearing loss with tinnitus 2 years ago but didn't have insurance. The clinic told me to see a specialist but I couldn't afford it so i just dealt with it. We have wonderful insurance now so I've seen 2 specialists and had an MRI. The last specialist looked at my scans as I sat hoping he would say it was normal. When he said " you have an acoustic neuroma" I blurted out " I knew it!"   I do my research! I just had a gut feeling.

Mine is 11 mm right cerebellopontine angle with 3 mm intracanalicular extension.

Not sure what that means but I know it's small.

My question is with a small neuroma is it possible to have neck pain, cramping and headaches? I"m taking tylenol or ibuprofin daily and had some neck pain consistently for several weeks. I've also had my right lower lid of my eye twitching intermittently for 5 days now. Could this have to do with it?

Thanks and I hope my questions aren't silly. Everyone thought I was being a hypocondriact when I mentioned the possibility of having an AN. Ooooh, I proved them wrong didn't I? lol.

Lana 

oh, I forgot to mention, I am 35 as of Sept. 27, wife, mother of 6 and 7 year old and my husband was diagnosed possible MS ( multiple sclerosis ) before my diagnosis. Sometimes you just wonder what the heck is going on??? We are lucky though, we have optimistic attitudes and love each other very much.

For any other newbies out there, what doesn't kill us only makes us stronger.

[Chris]

Hi Busy Bonnie,

You will find when reading through many topics on this forum the symptoms are varied. It appears to depend on the size and more importantly the location. I have heard of others who have similar symptoms to yours. I also diagnosed my AN. With hearing loss and facial numbness I was given a CT scan. They didn't find anything. When I started getting tinnitus a friend referred me to a deaf website where I found my symptoms were describing AN. I went back to my doctor and insisted on a MRI. Before the MRI a specialist told me I did not have symptoms of AN or hearing loss. Proved him wrong didn't I!. Then he charged me $200 for his service lol. Anyway, read through the forum as much as possible. You are not alone.

[amylynn]

Heloo BB,
I have the same problems, neck but also low back and sciatica.  I have read that you can run into problems with pain/posture from your body attempting to compensate for balance issues.  I havent done much research yet but have been doing exercises for my neck,  have a traction device and am seeing a pain management specialist.  Also, I probably take way too much aleve.
glad your posting.
take care
Amy

[flier58]

hello BB,
I am also relatively new to this incredible site but I could learn a lesson or two from you about attitude.  You are an inspiration and I needed it today after moping for 2 hours. 
Welcome to our exclusive society even though we would be much happier you've never joint it.
Many great people and advice here but remember everyone here has their own circumstances and  issues so don't try to apply all of them to your particular situation - it is very unique.
Sincerely,
Flier58

[BusyBonnie]

Thank you everyone for your help! It helps knowing there are others dealing with the same things even though I'd rather no one had to go through this. I just know there could be worse things. I'm glad I was also able to help flier feel a little better! I've learned the more research I do the better I feel. When my Husband was diagnosed possible MS my world came crashing down on me because I didn't know what that meant. If I had done more research it would have been easier to handle. I will keep reading the posts on this site and will keep others posted as to my situation so that I may help them as well.

BusyBonnie
(Actually my horse's name) She helps me get through things like no human can!

[Joef]

I had neck pain .. and never connected to my AN .. they kept asking about headaches ..

after surgery .. NO NECK PAIN .... its been over a year . and NO NECK pain ..... 

[Obita]

Hi Lana:

Welcome.  My eye twitched like crazy until I got it out. 

Good luck in your quest to find the best.  Where do you live? 

Kathy from Minnesota

[Laura]

Hello BB and welcome! You have come to the right place if you are in search of knowledge; knowledge is power! I am also newly diagnosed and this site, but more importantly, the people on this site have made a world of difference to me. You have a wonderful attitude about your situation and that is what you need to make it day by day as there will be bad days along with the good. Just remember to keep your chin up and move forward.

We are very close in age - I'm 33 and am also married with a one year old.

[BusyBonnie]

Thanks for the support everyone! Joef I'm so glad to hear your neck pain is gone! I hope mine goes away too. Now my left side of my neck is hurting and the muscle is cramped and tight. It could just be stress related though. Today I'm feeling a tingling on the ri8ght side of my head which is where the AN is and pressure on my right eyebrow. All of these are more of just an annoyance not severe but with every little thing you wonder. I'm sure all of you experience the wondering as well. The good news is my Insurance rocks so far! I just got registered to schedule an appointment with UCSD and I hear they're REALLY good so I'm looking forward to meeting with them.
Obita, I'm glad to hear your eye twitch went away! Mine seems to be slowing down if not almost gone so it may have had to do with stress instead of the AN but who knows.
Laura, we are very close in age but it must be hard to deal with an AN while raising a one year old. Thank you for your encouragement, everyone has made me feel very optimistic. Thanks everyone!

Lana

[marystro]

Hi BusyBonnie,

Now I remember the Dr.at USCD that I was going to see.  It was Dr. Doherty (I think she's from House) !  I canceled the appointment with her because I was recommended by my local neurosurgeon to go with Cyberknife.  If you decide to do microsurgery, UCSD's Dr. Harris is a very reputable surgeon locally.  I would still ask how many AN cases he operated on just to get some references.  House by no means is the top choice given their specialty on AN surgery.  There are many on this board who will offer their positive experience with House in a heartbeat!

BTW, do you live in Valley Center?  I see that you have horses...  I live right across the highway 5 minutes from the new San Diego Cyberknife Center.  You are now the 3rd ANers in my neighborhood I ran into since I found out about my AN in July.  One who was treated with CK 2 years ago and is doing wonderfully well.  One in the stage of getting ready for treatment (I believe it will be microsurgery) and now you!  May be we ought to have a local San Diego get together for moral support...  Hmmmmmm.

Mary

[BusyBonnie]

Thanks for the info Mary! I'm probably going to get copies of my scans and send them to House and to San Diego Cyberknife. I'm so confused on wether I want surgery or CK. I'm going to see what happens at my appointment before I make a decision.
I actually live in Ramona,Ca. I have one horse and my sister has one. Maybe we should have a local San Diego get together. Could help a lot of people.

Lana

[marystro]

Hi  Busybonnie,

You need to find a physician who is not biased on surgery nor radiation.  There is a local neurosurgeon I went to see before I made my decision.  He is a surgeon but is very objective and gave me advice for Cyberknife due to my good hearing and no other major symptoms!  I was very impressed with him.  He is located at Hillcrest.  Other than him, I also visited Stanford and met with Dr. Chang who does 50% surgery and 50% Cyberknife (radiosurgery).  He recommended Cyberknife.  So you see, fortunately I had 2 unbiased recommendation and opted to go with CK.  It is not always the case when you meet with surgeons or radiation oncologist.  Some of them (not all) tend to suggest treatment option that they are familiar with.  Please make sure the doctors you are seeing are not biased over one way or another and that their recommendation is in the best interest of the patient.

Good luck in your decision process.  You will find a peace of mind once a decision is made.  I had such high anxiety before treatment decision and so stressed out.  It is normal.  You will find this board of tremendous help!

Mary