Anyone else experience two of these surgeries before?

[Huber920]

  My name is Nate, and I am about to experience my second surgery for an acoustic neuroma. The first one, done in 2007, resulted in a failed extraction of the tumor. At the time it was only 3 mm and when the surgeon went in, he did not see the tumor. The top nerve was removed but he could not see the tumor on the lower nerve either. So I went through the agony of the recovery only to find out that the tumor was still there. Apparently it must have been on the lower side of the bottom nerve. Now it has grown to about 7mm so we are going back in to get it out. Ugh!
   I ask if anyone has gone through this before because I do not know what type of recovery I should have this time. Theoretically, since my brain has learned to compensate by using signals from the opposite side of my head, I should not experience much dizziness in my recovery. In fact, the balance test that was performed showed zero signals from the side of the neuroma. That is encouraging but yet I continue to remain quite nervous because I certainly do not want to go through that recovery again.
   Any comments would be appreciated. As far as I know, I am the only case of this ever happening.

[CHD63]

Nate .....

Welcome to this forum of fellow acoustic neuroma friends.  All I can say is, WOW!  I cannot imagine going in for surgery to wake up with the result of still having the tumor!

I have many questions about your situation:  1) what symptoms were you having prior to diagnosis? 2) what symptoms are you having now? 3) was "wait and watch" or radiotherapy ever discussed? 4) was your first surgery via retrosigmoid, middle fossa, or translab approach? 5) what is the recommendation now?

There are many medical facilities in the US that have had vast experience with ANs who will evaluate a patient's MRI CDROM and give an opinion on treatment options free of charge.  House Ear Institute in LA is probably the largest and most experienced one (http://www.hei.org/).  We strongly recommend seeking out the most experienced physicians you can find for treatment of an AN, since they are so relatively rare.

I cannot (nor do I want to) tell you what to do.  However, if I were in your situation, I would seek a second, third, maybe even a fourth opinion before entering into surgery again.

I can identify with your fear of a second surgery since I have had two retrosigmoid surgeries (one on each side).  I will tell you that recovery from the second surgery was way easier than the first (they were almost 14 years apart) and in my own mind, I credit the skill of the neurosurgeon, plus an excellent medical facility for the difference.

Many thoughts and let us know how you are doing.

Clarice

[Huber920]

Thank you Clarice.

Before I was diagnosed with an AN, I had multiple surgeries on the same side for Chlosteatoma. They had to remove one of my ear bones as it was deteriorated, and I had multiple tubes put in to decrease fluid behind the ear. When I began having hearing problems, dizziness and motion sickness type symptoms even when I didn't have fluid behind the ear or any kind of infection, they had me to an MRI which is when they found the AN.

My symptoms these days are occasional "wonky head", and hearing loss.

The reason we went in for the surgery the first time was because I was so young and I wanted to get it out and over with. So I decided against watch and wait. After the surgery though, I decided to watch and wait, and had MRI's each year after. Now it appears to have grown to 7mm so it was suggested the best thing to do is get it out before it gets larger and causes other problems.

My first surgery was via Middle Cranial Fossa approach, which I am doing again with the hopes of preserving my hearing nerve.

[CHD63]

Nate .....

Thanks for clarifying some things about your situation.  It sounds like you have really been through the proverbial "wringer" with multiple surgeries in that area.  I would think scar tissue could be a major factor in the recovery from further surgery.  I do hope you are receiving treatment at a large, established medical facility with much experience in treating ANs.

I am glad you posted your question on this forum and hopefully others with add their thoughts, as well.  As you know your case is not the norm so not many will have experienced what you have.

Please let us know how you are doing, in any event.

Thoughts and prayers.

Clarice

[moe]

Hi Nate,
Welcome to the forum. As Clarice said, you have been through the WRINGER and the fact that you have to go through it all again is NOT fun.

 I unfortunately can't relate to 2 surgeries, thank God, but can relate to any post op issues.

Will be interesting to hear what state you live in. Will be interesting to hear how things go and others with multiple surgeries will chime in.

this is a fantastic support group, I 'm glad you decided to "join the bandwagon." so Welcome again
Maureen

[Jim Scott]

Hello and welcome, Nate ~

I'm sorry to learn of your multiple surgeries to address your Chlosteatoma as well as the unfortunate, non-productive surgery in 2007 that was intended (but failed) to remove a small AN. This is rare but not unknown. 

I wish you total success with the upcoming AN surgery and thank you for choosing to post your question here.  You're among friends who can understand what you're going through, even if we haven't all had the exact same experience. 

Jim

[leapyrtwins]

Hi, Nate and welcome to the Forum.  Glad you've joined us 

You have   been through a lot.

Hope all goes well with the surgery.  When's the big day?

Jan

[Huber920]

Thanks everyone! My scheduled surgery is on June 9th. I am just really hoping the dizziness and balance won't be a major factor this time. The headaches and weakness I can deal with.

Some memories from my last surgery
Last time I did not have much luck in the ICU. The call button was broke so the nurses could not tell when I was calling. Also the beeper kept going off like crazy and I'm sure you all know how any sound during post surgery is a bad thing. My catheder was put in wrong or something because it was the worst pain I've ever felt in my life. This time I would rather just strap a milk jug down there. Ha! 
   Then after leaving ICU I was put in a room with a homeless man who had his jaw wired. He was taking full advantage of being able to watch MTV. It kind of cracked me up actually, but he kept turning up the volume and we had to ask him to turn it down repeatedly. Finally a very sweet nurse found me another room all to myself. I will never forget the wonderful feeling when I could eat again. Those hospital mashed potatoes came straight from heaven! When they sent me home, a very loud construction crew just happened to be working on the street right beside my window. My dad asked them if they could stop for the day and being the nice fellas that they were, they did.
   My family was the best medicine I think. All the love and help they gave me was incredible. Especially my wife Angie. She stayed up countless nights with me as I could not sleep and the medicine caused nausea and shaking. She was in school at the time, and unfortunately her grades dropped as a result. But she made it through just fine. I really enjoyed one of the ways we came up with for balance rehab. We turned on some soft Willie Nelson tunes and slow danced. Obviously not moving too much but we held each other tight and swayed back and forth. It was wonderful. Another way I performed rehab was to sit on the front porch and watch cars go by. I would follow a car from right to left and left to right. Each time my head felt like a marble in a cereal bowl. Slowly over time my "marble head" would sway less and less.
   
So, anyway, we shall see how it goes this time around. Thank you for all of your wishes and blessings.

[CHD63]

Nate .....

You seem to have a very upbeat attitude and as you know that is half of the battle in recovery.

I can identify with much of what you described my first go-around.  Second time was totally different with attentive staff, a private room, and basically no complaints once they let me have food.  I pray this is what you will experience this time ..... you deserve it.

Please let us know how you are doing ..... you are one of us now.     ..... and we tend to be concerned if we do not hear anything.   

Thoughts and prayers.  Clarice

[moe]

Nate,
Sounds like the second surgery will be a breeze, considering what you went through with the first!  I can't help but laugh when hearing that the call light was broke in the ICU!!!!!! Ah modern technology..

Since you know what to expect balance/dizziness wise, you will be ahead of the game.. I love the romantic dancing for balance control BTW. That is sweet and therapeutic too. Keep it up before surgery too.

I'm confident the second go around will be so much easier.

June 9th is just around the corner. How are you feeling, symptom wise at this point?
Maureen

[Huber920]

Symptom-wise I am doing pretty good. I think my mind is my biggest problem right now. It's hard not to think about an upcoming surgery.

You all are so extremely nice and helpful. I wish I would have joined this forum before the last surgery. It's nice chatting with people who have shared the same experiences. I hope to continue to post on here and talk to others who may need help and support.

[Jim Scott]

You all are so extremely nice and helpful. I wish I would have joined this forum before the last surgery. It's nice chatting with people who have shared the same experiences. I hope to continue to post on here and talk to others who may need help and support.

Thanks for the kind words.  We look forward to seeing your future posts. 

Jim

[Jwh]

Hi!
I've had the unfortunate luck of having two surgeries.  Yes, the second surgery is MUCH easier because your body has already compensated for the balance issues, etc.  I wasn't dizzy or nauseous.  I recovered much quicker the second time around.  Even got released from hospital after 2 days.....
Jen

[Huber920]

Oh Jen, that is so good to hear! I know that isn't a guarantee that I won't have dizziness or nausea, but it sures gives me hope. Awe, wow. Just hearing you say that makes me feel so much more hopeful. Thank you thank you thank you.

[Jwh]

Hi!
My doctor told me it would be easier - I didn't believe him.... It really was!  There is another women on the forum who had surgery twice and she would agree.  I'm glad to make you feel better