Thanks.

[vjw1218]

Thanks to all for your insights.  I have not yet scheduled my surgery. I still have to meet with the neurologist partnering with my neurotologist and will set a date at that time. Because of some personal plans that were scheduled before I was diagnosed, I will not have the surgery until after June 1, 2007.

After reading many posts from folks who swear by CK/GK therapy, I was beginning to question my decision. However, I feel good about things and will go forward with the surgery. Saving as much hearing as possible is paramount.

How was your recovery time?  Side effects? Residual symptoms?  I suffer from extreme dizziness at times and I'm hoping the surgery will help with that. There are days when it's hard to hold my head up.

Cheryl, I'm all for them using some belly fat!  A little liposuction can never hurt!

Blessings to all,
Valerie

[Jessie127]

Hi Valerie

  Best of luck and keep us posted.  Before surgery I had horrible headaches and I found out I had an AN because I lost my hearing for about 1 week.  Recovery for some people isn't so bad.  You just need to put a lot into it you cannot let yourself get down.  You'll have a physical therapist helping you walk.  I had balance problems for about 6 months after surgery i would lean more towards one side and sometimes maybe even fall.  Also my eyes didn't produce tears so I used tear drops for a while.  Don't worry you should feel better after surgery.  They also got some fat from my bikini line for the surgery it's a very small incision though and like my husband says that a scar of Courage nothing bad nor to be ashamed about.

Hope to hear from you soon,
Jessica

[Desilu]

Hi Valerie.

Some people that have dizziness before surgery do not have it afterwards. Did you mention how big your AN was? I had temporary facial paralysis and dry eye which lasted about 7 to 8 weeks. By the time I went back to work, you could not tell that I had surgery except that my hair was shorter on one side than the other. Do not second guess yourself. Making an educated decision is the hardest part. The rest is up to your doctors and God. I wish you the best on your AN journey. If I can help in anyway, please send me a personal email.  Ann

[Obita]

Good luck to you Valerie - Life is good on the other side!!

Congrats on making your decision, Kathy

[vjw1218]

Hi Valerie.

Some people that have dizziness before surgery do not have it afterwards. Did you mention how big your AN was? I had temporary facial paralysis and dry eye which lasted about 7 to 8 weeks. By the time I went back to work, you could not tell that I had surgery except that my hair was shorter on one side than the other. Do not second guess yourself. Making an educated decision is the hardest part. The rest is up to your doctors and God. I wish you the best on your AN journey. If I can help in anyway, please send me a personal email.  Ann

Hi, Ann.

My AN is very small 4.5 mm X 7 mm. - about the size of a small pea - but it's located very, very close to the inner ear which makes retaining hearing much more difficult. At that point the nerves split and become very fine. I'm thankful though that it's closer to the inner ear and not the brain stem.

The normal success rate for maintaining hearing with MF approach is 60% to 80%. However, because of its location, my neurtologist feels I will be in the lower percentile.

Miracles still happen!

Valerie

[ppearl214]

Valerie,

I ask only out of curiosity and not disrepect but have you spoken to anyone about radio-surgery? Whereas your AN is small and radio-surgery has a hearing retention rate of over 90%..... or have the dr's mentioned to you about "wait and watch" since it is so small?  Do they know at what rate it is growing (mine did grow fast, but I know of many that have been wait/watch for years as these suckers tend to grow -- on average -- of approx 2mm/yr)?

I think it is great you have made your decision and we are all going to cheer you on... (we usually wear our pirate socks for good luck for whoever -- or is that whomever -- during someone's treatment day [pls reference the "Good Morning Thread, pgs 1-3 for the pirate updates])

Again, this is solely on curiousity as it helps me to be a better leg of support in how peeps go about their decision making process... again, no disrespect.

Congrats on your decision... we are so here for you!

Phyl

[Featofclay]

Hi Valerie,
Miracles do still happen.  It is a great feeling once you have made the decision which way to go.  Tomorrow will be five weeks since my retrosigmoid surgery and I am doing extremely well.  My main problem is fatigue but my husband has been a trouper and is taking excellent care of me.  Somewhere I read at the six week mark ANer's start showing more improvement (where I read that I can't remember!).  Think positive and don't question your surgery decision.  
Jean

[ppearl214]

Hi Valerie,
Miracles do still happen.  It is a great feeling once you have made the decision which way to go.  Tomorrow will be five weeks since my retrosigmoid surgery and I am doing extremely well.  My main problem is fatigue but my husband has been a trouper and is taking excellent care of me.  Somewhere I read at the six week mark ANer's start showing more improvement (where I read that I can't remember!).  Think positive and don't question your surgery decision.  
Jean

Jean,

so thrilled to hear you are doing so well... continued wishes of wellness to you

Phyl

[vjw1218]

Valerie,

I ask only out of curiosity and not disrepect but have you spoken to anyone about radio-surgery? Whereas your AN is small and radio-surgery has a hearing retention rate of over 90%..... or have the dr's mentioned to you about "wait and watch" since it is so small?  Do they know at what rate it is growing (mine did grow fast, but I know of many that have been wait/watch for years as these suckers tend to grow -- on average -- of approx 2mm/yr)?

I think it is great you have made your decision and we are all going to cheer you on... (we usually wear our pirate socks for good luck for whoever -- or is that whomever -- during someone's treatment day [pls reference the "Good Morning Thread, pgs 1-3 for the pirate updates])

Again, this is solely on curiousity as it helps me to be a better leg of support in how peeps go about their decision making process... again, no disrespect.

Congrats on your decision... we are so here for you!

Phyl

Hi, Phyl.

Yes, Dr. Eisenman went over all the options - watch and wait, radiation and all surgical procedures. Because I'm 'young' at 36, he feels the Middle Fossa approach would be the better option.  The long-term results and benefits of radiation on AN have not been proven. (20+ years, etc.)  If I was older, he would have recommended that for me. And, if there is a recurrence with the radiation, surgery is no longer an option. I am not willing to watch and wait since treatment would eventually be needed anyway.

Rest assured, he is not an advocate for one procedure over another. In fact, he had a radio-surgical doctor at the ready in case I wanted to speak with them. He was candid. His wife's best friend was diagnosed with AN a week before my appointment with him. He gave her different advise based on her case, age, etc. It was good to know he is not partial to one form of treatment.

Based on my research, the Middle Fossa approach is the best one for me.

I took no offense and mean no disrespect to others who chose a different approach.

[ppearl214]

Hi Valerie,

I will not hijack this thread and am utterly, completely supportive of your decision.  I might dispute what the dr told you but will not do so as you are absolutely doing what is best for you and I think that is great!  I'll have my pirate socks on for you and please keep us updated on it.  Looking forward to when you become a "postie"... it's a great feeling!

Thanks again,
Phyl

[Stevey]

Valerie,

I had surgery to remove my somewhat larger AN on Jan 31st and am back to normal for the most part.  I had a retrosigmoid resection (11 hur surgery) and have a pretty macho scar on my left side, mostly covered now, still macho.  I would let you know that they will probably manage your pain well and you will wake with the regular post surgical array of tubes and wires hooked up to you (annoying), I had double vision and awful anesthesia  hallucinations and they could not get me enough ice chips (for me) but they held back because they did not want me to vommit in the MRI in the morning.  I did anyway after the mri, I suffered a cerebellum bruise and blood clot and hydrocephalus, they monitored my clot by daily CT and it resolved as well as  the hydrcephalus n it's own, but the cerebellum injury made me sound super loopy and slowed my recovery by a bit, they kept me at UPenn for two weeks for in-patient rehab and I went from unable to get out of bed to walking in one week to sidestepping and walking backwards while catching balls after week two, My experience at Penn was great, my tumor was pressing on my brain stem and I did lose hearing but it was almost gone before I went in and it has been tough to deal with no sense of directional hearing.  If you have tinnitus now it may stick with you.  Another note, I went trough rehab with a person with a small tumor and they retained much of their hearing, but their balance was awful.  Sometimes, according to my neurosurgeon Dr. Kevin Judy, patients with bigger tumors have an easier time with balance because they have been cmpensating with their opposing vestibular nerve if they have had damage to (their affected nerve)  like I did.  Also, I am guessing with a small tumor, there is less to tug on to pull it free of all the nerves, be sure that they will be monitoring your nerves.  Nne of these reasons are meant to persuade you out of your decision, I am happy with mine.  It is great to be rid of that lump that my 4 yr old daughter named chewbacca.  I wish you a speedy recovery and event free procedure.  Post recovery, esp. when you are done with pain meds expect bouts of fatigue, I walked alot to build up stamina and am free from nappy days now and am running my business again, I rode a bike over the weekend (wasn't too pretty but didn't fall!)  But, everyone recovers differently so you could be back to speed sooner or later than me. 

God Bless,


Steve