Just learned I have an AN

[Jim Scott]

I am very afraid of the possibility of severe headaches. Has everyone that has had Retorsigmoid had headaches?  Should I expect eye problems with both types?  Thanks!

I underwent the Retrosigmoid procedure and did not experience headaches.  Not once.  Slight double vision for approximately the first 72 hours post-op, then it went away and never returned.  No vision problems of any kind afterward.  No facial nerve complications, either.  However, each AN patient is unique and so are our individual outcomes, often depending on tumor size, location and the surgeon's skill.  As you know by now, there simply are no 'guarantees' in this kind of surgery.

Jim

[mindyandy]

Hello there.
I'm sorry you had to join our club. We are glad you found us tho!!! LOL
I was dx age 29 1.4-1.5 something like that and I was devastated. My world suddenly came to a stand still. It was awful. At the time I lived in Seattle and met a few doctors for opinions. I decided to have CK done and that was Jan 2008 (wow 5 years ago  ). All was well until November 2011. I started to have trigeminal pain. Had an MRI and my AN did not grow but was touching my trigeminal nerve??? I'm not sure why I started to be bothered by this if it had not grown? NE-ways I was in terrible pain. I sent my scans to Dr. Medberry who specializes in radiation treatment and he wanted me to wait and see how things pan out 6 months from then....I was in pain and was not going to wait that long.
Long story short I sent my scans to House attn:Dr. Friedman. Wonderful decision. I did not want surgery because well.....it scared the heck out of me. I did decide to have surgery March 7, 2012. If you read my past posts you will see that I still have my AN. Dr. Schwartz and I decided since my AN did not grow and my hearing was perfect that he felt to just take enough off the trigeminal nerve and do a MVD surgery. This is what they do for trigeminal sufferers.
I am very thankful to have such wonderful surgeons. House is highly respected and a place for you to consider. My opinion.
Best of luck no matter what your decision is.

Mindy

[neetze1]

Jan, I was told by the neuro surgeon that I would not have hearing with the Retrosigmoid. In fact, they said hearing was not their priority. I am happy that both you and Jim do not have headaches. 
Mindy, I am glad you didnt wait 6 months for help. What was that Dr thinking??  House seems to be an excellent place. 
I am still on my research journey.  This week I check out radiation. Both fractional and proton.

[tdsole]

  Just recently diagnosed with fairly small AN. 0.6x1.1x0.6 symptoms i thought had appeared approx 2 mths ago but since joining this forum i think i have prob had symptoms for the past 2-3 years. My symptoms are getting worst very fast. I get constant ringing, buzzing,headaches, sometimes constant and at other times intermittently, along with searing pain in my ear, i can only describe it either as a knife stabbing, an iron or having my ear dug from the inside out with a rusty spoon. At times it is very tolerable and at others it can become excruciating.  I can deal with a rather slow process as it seems things always are in Canada. But my symptoms are beginning to affect everything and my quality of life, if the pain gets any worse i will be forced to take a leave from work. As someone had stated before its easier to deal with this kind of pain from the inner dwellings of your home. I'm glad to have a diagnosis because i pushed the docs and said this was not normal but its I'm rather fearful when i realize how long this process will take. Like what the heck is my ear going to fall off my head and melt off before i get treatment. what does everyone do with the rest of their lives . I need answers asap

[michaela]

hello, neetze,

don't be sad, as somebody said in this thread, there really are far more terrible things that can happen to somebody than a AN (and I have way more problems than the average AN-patient!). Getting a lot of information is the best thing you can do. It is important to have the surgery done by somebody who actually performs it very, very often. You will find out who that is in your region (or elsewhere). I think it is also a good idea to inform only the people who will be helpful in an essential way. I had the impression that telling "everybody" just would distract me, when I needed concentration. You will find the best way to deal with it, and you will see that things get less scary day by day (and the more you get used to the idea of what is happening to you).

kind regards
michaela


2009 diagnosis (AN 3 cm diameter), 2010: surgery, then regrowth. 2011: GK; first darkening of the tumor, then regrowth. Now awaiting new treatment (surgery).

[neetze1]

Thank you Michaela.  I have made my decision and it is House.  I think they have the most experience.
I have been trying to only inform people that are in my circle because it is distracting and I am trying to work in a very public job.
Word seems to be traveling very quickly and I have one more week to work.  It is going to be very hard week!   

[It is what it is]

Anita, please keep us updated.  I also chose House with middle fossa surgery and am doing well after 7 months.  Remember that vestibular symptoms may be a problem for awhile after surgery. 

Karen

Karen

[neetze1]

Update,
I am back home from my 3/20/13 translab surgery at HEI.  I can only say that I am doing much better than I expected!  I have full facial function with some numbness in the lip, tongue and left cheek.  I am improving everyday.  I had some p.t. today and we worked on strengthening and balance.  I am adjusting to being SSD.  I find it hard to tell where sounds are coming from.  I did find that while I was in Los Angeles I was having trouble in crowded noisy places.  I have not ventured out anyplace since I have been home as I prefer to just be home!  Thank you all for your support!

[It is what it is]

Congratulations postie.  You have come out on the other side!  I'm glad to hear you are doing better than you expected.  Take good care,

Karen

[jaylogs]

Hey Anita, glad to hear all is well and you did well with your surgery.  I bet it must feel good to have the worse of it behind you!  Take care and keep us updated as you continue to get better!

Jay