Newly Diagnosed in Omaha

[nebaghead]

I was just diagnosed last week with Acoustic Neuroma on the right side (11 x 7 x 9 mm).  The hearing in my right ear has been getting worse over the last 6 to 7 months and a couple months ago I mentioned it to my doctor when I was visiting him about a throat/congestion issue and they thought it might be allergies causing issues and wanted me to try over the counter medicine for a couple weeks and get back with them.  It didn't improve and one thing led to another and I saw an ENT who had me take a hearing test and have an MRI as a precaution because of the sudden loss of hearing in one ear. 

I'm all over the place about treatment and this site has been phenomenal and answering a lot of my questions.  I am very fortunate as my uncle is a Neurosurgeon with over 40 years of experience and he is reviewing my MRI and reports and making inquiries to find out who would be the best to treat my AN (He immediately acknowledged HEI as the leading clinic for AN).  I do have an appointment this week with an Otolaryngologist (Dr. Britt Thedinger) that I was referred to by my ENT and depending on what my uncle says will send off my records to who he recommends.  My uncle already said he would think surgery would be the best option especially considering the fact that I'm 39 and that the tumor is small and should be relatively easy to remove.    Also, I am a type 1 diabetic so as I get older, the risks are much higher for me for surgery, so I want to do something that will result in more surgery or treatment 10 to 15 years down the road.

The thought of the recovery from surgery makes me nervous as I'm very independent and have a hard time asking for help or relying on others.  I also, don't want to put my wife through a lot of extra work.  I'm also concerned about returning to work as I'm a System Analyst /DBA and I've read stories from some people stating how it's hard to deal with numbers and problems with typing, etc the first year or two of recovery.  I'm curious if anyone who had the surgery is a programmer and how it affected their ability to work? 

Anyway, I just wanted to share what was going on, especially with people who would understand what it feels like.  Thanks so much for sharing your stories and experiences on this forum.  I'm not sure what I would have done with out it this last week.

-Drew

[Chances3]

Hi Drew,

I'm sorry you have a AN, but you have come to the right place for information and to share with other people who understand.  There are predominately three groups here in the AN community, they are the Watch and Wait, radiation or surgery.  These are your choices, and I highly recommend that you learn as much as you can so that decisions are easy to make.  Surgery is a very big step, so give everything some thought before making a final decision.  For some of us, we were not afforded the chance of Watching and Waiting, my own personal situation which I have detailed here numerous times is that I suffered from severe vertigo attacks of the full spin variety.  The frequency increased which lead me to an ENT, MRI and ultimately I chose surgery.  I had a great surgeon here in Manhattan who has spent a career in this field.  Unfortunately for me, my post op life has changed dramatically, but I don't believe it was related to the skill or lack of skill in my surgeon.  I am also in my 50's so it was a little more challenging for me.  What I have learned by reading posts here and exchanging emails here, is that no two experiences are the same.  In addition, these nerves that the AN grows on are very sensitive, so each person has different results.  There have been a lot of posts here about the surgical experience at HEI, and I am sure many will post after me.  If you make surgery your decision, from what I have read here, HEI is an excellent place to have it done.  Sorry for the long post, I hope that helps.  Keep us informed, and continue to post and ask questions.

[It is what it is]

Welcome to the AN family.  I'm fairly new to this myself.  You are fortunate to have an expert to turn to in your own family.  All I can offer is my own story.  Due to increased symptoms soon after a recent diagnosis, I am choosing to have middle fossa surgery at HEI.  This decision came after hours and hours of research, consultations with specialists with this tumor and reading all the stories on this discussion list.   I respect that we all have different reasons for making treatment decisions regarding the unique factors involved for each one of us.  I wish you peace with your final decision.

Karen

[Cheryl R]

Hi Drew.    Another possible place to check out is Univ of Iowa and Dr Bruce Gantz.      There are many of us here who over time have went to him and I do on an on going basis due to having NF2 and 3 tumors.      I live near Des Moines and  know he has had several out of state patients.   He does around 70 ANs a year.                  He does more mid fossas than Mayo's to possibly save what hearing one does have.
 This is not an easy decision about care and we all vary with how the tumor is affecting the nerves and it's location.      One would like to know ahead how their own outcome will turn out.       There are many on here who do well and are the forum for a short time and then back to their usual life with possible some adjustments.    It is easy to think that everyone has severe chronic problems post op if that is the way one goes.           Gantz is not big on radiation while some drs do both or are all for radiation.
       The diabetes will make it a bit harder while on steroids and need more watching than usual.                  Good luck with what you choose and ask all the questions you need here!                                         Cheryl R

[Jim Scott]

Hi, Drew ~

I'm sorry you've been diagnosed with an acoustic neuroma but glad that you discovered the ANA Discussion Forums and have found them beneficial as you contemplate surgery or radiation. 

As Karen ('It is what it is') stated, having an uncle who is an experienced neurosurgeon is a great asset for you and can only help make reaching your treatment decision easier.  Unfortunately, your post-op recovery cannot be credibly predicted as this is very individualized with numerous factors involved including the actual size and location of the AN when the surgeon approaches it, the severity of damage to the acoustic and nearby nerves and of course the surgeon's skill as well as your state of heath and determination to recover and return to your normal life.  You will want to accept some help in the days immediately post-op but within a few weeks, with no complications, you should be able to be independent again.

We're always willing to offer advice (where we have expertise) share information and above all, offer our support as you embark on this journey that no one really wants to take.  I trust you'll make the best treatment choice for you and of course, we'll stand behind that choice as well as the facility you decide to use, be it HEI or another.

Jim

[millie]

Finding this forum is a blessing!  You are also fortunate to have good advice from your uncle.  I am a newbie too.  Hang in there.  Millie

[nebaghead]

First of all, thanks for all the responses.  It makes things a lot easier knowing you guys have already blazed a trail and can answer a lot of my questions.

I had my first visit with Dr. Britt Thedinger.  A lot of what he said was explaining the condition and it was nothing I hadn't read from the forum, brochures and my uncle.  He did give me a detailed explanation of my MRI and location of my tumor.  He said the tumor had filled my ear canal completely and was coming out the end.  (He used better terms than me)  The shape kind of looked like a mushroom.  He discussed both surgical and radiation treatments and answered my list of questions about each.  He recommended the Translabyrinthine approach as my right hearing is nearly unuseable as is.  He said the radiation would have a chance of preserving my hearing as is, but I would need a hearing device.  He has me visiting the Neurosurgeon who is part of his team and the Neuroradiologist they work with.  After I visit all 3, I would visit him again to discuss what I would like to do.  I plan on sending my information to HEI and whomever my uncle suggests.  I don't like the idea of just sacrificing my hearing in that ear, so I want to see if other doctors think they can remove it using another approach.  He was very positive about the size being small and placement would give me good odds to not have facial nerve complications (he did caveat it that there are no guarantees).  Also, he said with BAHA and CROS I will be able to alleviate some of the affects of SSD. 

I think he scared the crap out of my wife, as she has read some stuff about AN, but not nearly as much as myself.  He appears to have good outcomes and has been doing this for over 20 years with the same team with over 400 surgeries.  I do feel better about the recovery after asking him several questions about me being Type 1 diabetic and how that could affect my recovery. 

Has anyone else been told the Translab approach is the only option and heard otherwise from another doctor? 

[BlueSky]

Hi Drew,
I work on databases too! Unfortunately I can't tell you about the recovery because we seem to be on the same path right now. I was diagnosed with a 6mm AN in May. It was a shock because I was getting an MRI for another reason and they found this little booger in there. I am in Colorado and am talking with my local doc and I plan to send my records in to House as well as get another opinion from a doctor out in Florida which is closer to were my fiance lives. I just started having symptoms which are swaying my actions from watch and wait to getting surgical consults. I'd rather get this thing out if it is going to start impacting my life negatively.

I haven't had the other two consults yet but the first doctor recommended mid fossa if I opted for surgery with him. From what I have read different doctors favor different approaches based on their experiences as well as the tumor position/size and your hearing level. Your tumor isn't too much bigger than mine (it's still small) so i wouldn't be surprised if different doctors suggested different approaches. 

[Chances3]

Hi Drew,

Everything you are doing so far is great.  Keeping learning and finding about all your options and choices.  I can't help you much more, I had a different approach called middle fossa.  I'm sure other members who have had your situation will weigh in.  I have you in my prayers.

BlueSky - I also have you in my prayers.

[schmidtkat]

Drew,

First of all, I am sincerely sorry to read of your AN diagnosis. As I read through your post I quivered at the similarities I could find in your words. I actually do not live far from you. I am in Iowa, near Denison. My diagnosis came July 27, 2011. As that anniversary date approaches I suppose I am more sensitive to all of the emotions which come flooding into this milestone.

Treatment for allergies or sinus stuff was my initial response. In fact, I passed it off as something I would just pop in to a local small town doctor's office and see whatever PA was available to get something stronger than over the counter meds. in an attempt to knock whatever I had. Wow, this ultimately sent me on much the same path as you with an ENT who pursued this further with an audiogram and MRI which uncovered my 3+ cm AN. With this size tumor one decision was made for me...surgery. Every consultation I had confirmed this to be my best option and even the translab approach for it was a universal recommendation. So, getting through the initial numbness of what was happening and being discussed as though we were talking about someone else or something else (not unlike something needing fixed/replaced on a car) I quickly knew my attention needed to focus on who could give me the best outcome.

It appears you may be at this phase of your healing process. There's no easy way about it other than to keep consulting with as many providers as you need to gather the information which leads you to a peaceful choice. When you land on it, you'll know it. Many on this forum will give accolades to the medical team that provided his/her care. I think that goes to show there are wonderful options to consider.

I chose to go to the HEI and have NEVER regretted that decision. They have an incredible team who not only provided the medical care I needed, but also gave me the confidence in their abilities for me to mentally be prepared for such a life changing proceedure. As you search for the provider to best meet your needs I would highly recommend you take advantage of the HEI's free consultation services. It's not often one gets to use medical and free in the same breath. Their review of your records can at least give you one more piece to consider in the puzzle.

Drew, while so much of this is "about you and your situation" I am amazed to see how quickly you mention your wife's reaction to all of this. I commend you for the sensitivity you have to her feelings. This kind of news can certainly consume all of ones thoughts, time and energy. While you absolutely have every right to get tunnel vision on the decisions to be made for your physical health, it's important to consider what keeps your relationships healthy. My family immediately wanted to put everything else on hold, cancel upcoming plans and in effect suddenly remove everyday normalacy. This can be a tremendous outpouring of support while at the same time it may create a mixed bag of emotions. I felt a great sense of guilt at one point that the only thing anyone wanted to talk to me about was my AN and that everyone close to me was putting things s/he really enjoyed on hold. I know I would have reacted that way too to do everything possible to help them, but there was a point in time where I just wanted everything to be "normal". Oh my..."normal" is something I can still long for, but I now understand there is a "new normal" post AN.

I'm getting WAY too windy this evening. Just know that coming to the ANA Forum is a tremendous place to find support, ask questions, vent or whatever you need along this journey.

I truly wish you all the best and pray for your healing.

Kathy

[jaylogs]

Hello Drew...welcome to our rather exclusive little club!   Sorry you had to find it but as you no doubt have seen there's no better place to be under the circumstances!  I don't have a lot more to add than what's already been discussed, so I just wanted to say good luck as you continue to find a treatment that will feel right for you. Keep us posted!
Jay