Just Diagnosed

[BoedyGirl]

Hi my name is Beth and I was just diagnosed with an AN last monday 7/8/13. They also thought I had a aneyrusm but that turned out to not be the case thank god. I have had ringing in my left ear and mild hearing loss in that ear for over a year. My family has a history of hearing loss so I was not worried about it even though I am only 23. Recently I have been having numbing/tingling spells where my left arm or lower leg would get tingly for a couple minutes and then go away. Last Monday this happened while I was at the grocery store and was followed with blurry vision in my left eye. I called my regular physician and he advised me to go to the local emergency room. I had originally been told my symptoms were due to an anxiety disorder but the vision problem and nausea were cause to go to the ER. I drove myself there and they did a CT scan which revealed a 4-5 cm acoustic neuroma on the left side of my head. I was then shipped to OHSU  where they confirmed the diagnosis and ruled out an aneyrusm following an angiogram. I am scheduled for surgery in late August and hate waiting that long. I am trying to stay positive about this whole situation and have a lot of friends and family supporting me during this time, but I have no idea how to cope with this kind of news. Any suggestions?

Thanks,

Beth

[arizonajack]

Sorry to have to welcome you to the club that nobody wants to be a member of.

Late August is only a month away. Probably can't do much better than that by way of surgical scheduling.

Best thing that I can suggest is poke around these forums and on the ANA website and learn all you can about Acoustic Neuromas as (even with successful surgery) it's something that you will have to pay some attention to for the rest of your life.

[LakeErie]

Hi Beth, It is difficult to cope at first. But reading this forum will show you people do recover after treatment and go on with their lives. Each case is different, but you will get better.
Until your surgery, try to take things one day at a time and focus on the present. Time always passes and your surgery will be behind you quickly. You will have support from many people here who know what you are going through so ask questions or vent, whatever you need to do. Good luck.

[BoedyGirl]

Thank you everyone for your advise. I am slowly coming to terms with the idea of having a tumor and am happy that at least it isnt cancerous. I have never had surgery before or been fully put to sleep. I am nervous about that part but will continue to read through other posts and see how other people's surgeries went.

[Pam Fraley]

Beth,
  The information packet that I received from the Acoustic Neuroma Association was very helpful and had lots of informative booklets.  Be sure to request this packet from them.  Also, someone in my AN Support Group recommended a guide published by Medifocus.  I ordered it the other day from their website but you can also get it on Amazon, etc.  They have several medical guides so just type in Acoustic Neuroma to find the correct one.  This guide also has a lot of useful information.  I read it for two hours straight the other day while watching my kids in the pool.  Another book that was recommended to me was "Hell In The Head" by David Douglas Shannon.  I ordered it the other day after reading the book review on line.  I look forward to reading it when it arrives. 

   I have also learned a lot by reading the entries on this forum and also the Acoustic Neuroma Association facebook page.  I'm not sure what state you are in, but I also recommend looking to see if there is a support group in your area.  I was very hesitant to join a support group but I took the first step and I am so glad that I did.

   Best of Luck to you!

   Pam

[prisca]

If you feel well enough have you thought of going to do something you find pleasant?  The week-end before my breast cancer surgery, I went to my favorite spa and got massages and sat on the porch in front of a lake on a rocking chair and read. (My idea of fun). 

[nclabtech]

Hi Beth, I am right there with you. My surgery is just a week away now on July 26th. I too have never had surgery, general anesthesia, or even been an inpatient in a hospital.
My AN was dx on May 7th and I still have some useful hearing in my AN (right ear), but not 100%. In fact it has worsened since my audio gram in April. You are right , once you are diagnosed, waiting for surgery is tough. You just want it removed so you can start the recovery process. I recommend keeping busy and the time will pass. Hang in there. Have some fun before your surgery and keep positive . I rode my horse today and wondered how long post op it will be before I can ride him again.
Take care.

[nftwoed]

Hi;
   There are lots of people in the OR and much activity when they wheel your gurney in. You won't have a lot of time to think about going to sleep. It seems scary to think about, but, try not to overrate that part of the surgery. You are being well monitored!

[Nank]

Sorry to hear about your AN.

Being "put to sleep" is always my favorite part.  I don't want to know what is going on.

The waiting is tough.  I have GK scheduled for 7/25.  Getting quite nervous!

[kareno]

Hi Beth:

I found the literature from ANA very helpful and informative.  My husband's surgery was 16 hours and he was well monitored I had complete confidence and faith in the team of doctors and nurses who took care of him.  It is not an easy journey and everyones is different but 3 weeks after my husbands surgery we went to the Bahamas.  The support groups are very helpful and the forum is full of amazing and caring people.   You will be in my thoughts and prayers. 

Karen

[Little_Bear]

Hi there,

I'm so sorry for you're going through. I know it's rough. Really rough. I'm 24 years old and was diagnosed with an AN this summer (not the best way to start summer off). You have to just stay positive and have hope! This is just a bump in the road, you'll overcome it! I wish you the best of luck and hope everything goes well and that you have a quick recovery. Just keep your chin up, it'll get better.

It's really hard being this young and getting something like this, so if you need to ever vent or just talk, feel free to send me a message, I'm all ears and can completely relate to the situation.

-Frankie