My 22 year old son was newly diagnosed

[S. Robin]

Thank you mcrue, I think I will do that.

[PranaRN]

This is a huge decision.  I will say that with a lot of research and consulting different surgeons, trans-lab is considered the best approach to save the facial nerve and offers the best outcome for those that also have developed tinnitus.  That being said, Jon is quite young and willhave a much easier time with recovery.  I do know MEI is considered one of the best around here for the AN. 

I also answered your email Sheila.  It is awaiting approval to be posted.

[v357139]

You certainly have nothing to lose by doing it.  I had three doctors advise me to go for microsurgery and then Dr Kondziolka told me I was a good candidate for radiosurgery.  Then I had to decide which made the most sense for me.  So it is best to talk to very experienced radiosurgeons if you want to know about radiosurgery.  And very experienced microsurgeons if you want to know about microsurgery.  You'll need to hear them out and then you and your son decide which makes the most sense for him.  Each doctor will have an opinion based on his skill in a particular area, and they will not always agree with each other.  If you are a member, this website also discusses the pros and cons of microsurgery vs radiosurgery.  Since radiosurgery has not been around as long as microsurgery, there are not alot medical studies documenting the long term effects of radiosurgery.

Let us know if there is anything you need help finding.

[Kathleen_Mc]

S. Robin
How is your son feeling about all of this?
Does he want to look at the option of gamma knife ?
I can tell you as someone who started this journey at the age of 23 I so wish I had the option......if gamma knife had been an option for me that is the way I would have went the first time around.( was offered gamma for the regrowth I developed but all the nerves were severed the first time around so what's the point).
There are people who just want to get the thing out and that's ok too!
Kathleen

[Sheba]

Kathleen - I am very sorry that you have had a very difficult outcome, especially when you were young at the time of surgery. But I think we need to give some context here for this concerned mother - surgical techniques have improved a lot, and nerve monitoring is now standard practice to avoid severing or weakening the facial nerve.  The chances of having the facial nerve severed are now less than 1%.  The chances of temporary facial weakness, which can last for 6-12 months, is about 5% - these are the stats from current studies of outcomes; very important to go to a high volume center for the surgery - not someone who does a few a year.

I just had surgery and I had zero issues with face / tears / tongue - I did lose hearing and I am doing therapy to restore my balance but I am very pleased with my outcome, and glad it's gone for good, no lifetime of MRIs ahead.  I don't want this mother & son to worry that the risk of facial nerve damage is "high" when these days, it is "very low".   Hearing nerve is more fragile (50/50 chance you lose hearing no matter what you do).  Facial nerve is apparently pretty robust.

I get your point though, that facial paralysis is very difficult and it is still a potential with any surgical approach. 

S - if your son moves ahead with surgery - i would say, pick best possible docs based on experience, outcomes; and then be very conservative with the advice of what NOT to do after, so you can avoid complications.  For example I was told to prop my head up while sleeping for one week - I am now four weeks post op and still propping up my head;  I am not lifting anything heavy;  I am not bending my head lower than heart - supposedly I can now but I don't want to or need to (I bend my knees and reach down instead if I need to).  I want to allow at least 12 weeks for the dura to heal before any bending, and more like 6 months before I start any weight machines etc in the gym.  the best thing post op is lots of walking, then add some upright cardio (treadmill, elliptical, bikes etc).   no swimming til the scab is gone (else infection risk), supposedly takes like 10 weeks for the incision to fully heal.  sorry too much coffee - i am typing like a mad man!

[UpstateNY]

Citiview, your numbers look about right for Middle Fossa being that there is more risk to the facial nerve.  For facial nerve preservation, translab is the best method.  This assumes hearing preservation is not needed.

To put this into better perspective, the outcomes I received from Dr. Schwartz at the House Clinic for ANs <2cm using the translab method are shown below.  The population included 1% with HB 5 or 6 prior to surgery, 2% with a facial schwannoma, and 1 % with a combined vestibular/facial schwannoma, which is more than likely where the HB2 and HB3 results came from.  This puts his results at or above that of the top radiation surgeons, which to me is extremely impressive.

98.2% HB 1 (normal)
0.9% HB 2 (slight weakness noticeable on close inspection)
0.9% HB 3 (obvious weakness, but not disfiguring)
0% less than HB3

Drs. Friedman and Giannotta (USC) quoted a <1% chance of any long term facial nerve weakness for ANs <2cm using the translab method, but gave no where near the specifics that Dr. Schwartz did.

My hometown doctors only do 10 per year, which I believe was exaggerated, so wouldn't provide a percentage other than saying my recovery could easily be 6 months or longer.  My local ENT was pretty impressed when I stopped by for a live visit just 2 weeks after surgery at the House to let him know how everything went.

[mcrue]

This is a huge decision.  I will say that with a lot of research and consulting different surgeons, trans-lab is considered the best approach to save the facial nerve and offers the best outcome for those that also have developed tinnitus.  That being said, Jon is quite young and willhave a much easier time with recovery.  I do know MEI is considered one of the best around here for the AN. 

I also answered your email Sheila.  It is awaiting approval to be posted.

PranaRN,

How is your tinnitus?

[mcrue]

I can tell you as someone who started this journey at the age of 23 I so wish I had the option......if gamma knife had been an option for me that is the way I would have went the first time around.

Aww. Thanks for sharing.

[mcrue]

very important to go to a high volume center for the surgery - not someone who does a few a year.

Excellent facts.

[UpstateNY]

Citiview,

You're absolutely right.  All the trade-offs and risks are what make the decision so difficult.  Each person has their own goals, risk level, and situation.

I too expect to live another few decades, so was skeptical about radiation due to lack of long term data.  I figure if my AN grows back 10 or 20 years from now, I could then take the radiation path being that I probably wouldn't tolerate surgery so well at that age.  Who knows, genetic research may provide new ways of treating ANs in the near future as well.

I posted the translab data because the original poster is considering translab for her son.  Hopefully, it helps put some data around what the expected results can be using this surgical method.

You are very lucky to have a great physician in your hometown.

[gedavis]

Thank you so much for the replies to my post. I am thankful that my son's tumor is small and we have time to consider the options. From what I read I think the doctor we choose can really have an effect on the outcome.

Please do not wait.  My husband had balance issues earlier this year, things were "off" and we had no idea why.  We thought he had just been ill in April with a virus (chills and fever nothing else) and we were so not expecting that one day just sitting in the chair watching TV he would experience Sudden Hearing Loss.  Within an hour I had him at an ENT and she knew immediately to do and MRI.  This was June 15th.  A few days later we found ourselves at the House Clinic with an MRI showing a 1.7 tumor.  Balance was already gone and so sadly was the hearing. 

Today he is home from having it totally removed on Monday.  In surgery for 8.5 hours.  The grief and devastation over losing his hearing in that ear is the worst part of the entire treatment.

I stayed at Seton - fortunately it is connected to the hospital and seriously you can toss a football from one building to the next.  I was able to stay in his room all night after he was out of ICU and while he was in ICU I was able to just go from Seton to the hospital every hour and check on him.  My 23 year old daughter and my in-laws stayed in the same room.  It is only $85 a night and well worth it.

The Doctors at House not only know what they are doing, they do it extremely well.  The Medical Doctor they use as part of their team is on the 2nd floor of their building.  The OR and Waiting Rooms and the Private rooms are all on the 6th floor.  They use them to the point of where the nurses and orderlies area very familiar with every step of the recovery process.  It is a true team of not just surgeons but staff at the hospital. 

Seton is NOT a hotel.  Instead it is a Guest Quarters place with a family TV room (My girl and I stayed up all night in their watching the olympics, eating, and going back and forth to hospital).  They have a great kitchen and breakfast area.  It is homey, comfortable, and we only saw 1 other family in the hallways - a young 20 year old who had his removed the prior week. 

I strongly urge you to use the doctors who perform these on a regular routine basis. 

[caryawilson]

Wow. As you can see there are lots of experiences. I'll share mine. Don't fret on the surgery type such as translab / retro etc. The surgeon will make the best decision based on your tumor location. In my case, I had a 4.5 cm tumor and loss my facial nerve due to the excessive vascularity of the tumor and my facial nerve was extremely weakened. I had a modified retro with a 5 cm hole to access the tumor.

You sons tumor is smaller. Also, the stats are brutal. Due to  the "exclusivity" of our club, it's difficult to rely on the stats.

If my tumor was smaller and a candidate, radiation was about weighing the chance the tumor may regrow after radiation treatment and the tumor may be 'stickier" for a future more complicated surgery. No easy answer and both have the full range of pros and cons. Being on this forum for some time, you will also see complications with radiation and surgery.  Being younger your son should recover quicker from either approach, but the more "popular" approach for a young adult is surgery or watch and wait.

I also agree the CSF leaks typically occur with the first 1-2 weeks or days from surgery. No heavy lifting and have "gentle" trips to the bathroom..  Personally I would not have this as a factor.

In the end your son's tumor is smaller and you've already come to grips with the hearing loss. Stats aside, you should expect to have a great outcome.  I guess if you get facial paralysis, it no longer matters if you had a 1% or 30% chance of facial paralysis.  Basically, the translab approach was explained to me as better option since it provides early recognition of the facial nerve so it's not accidentally cut. However at the major facilities I haven't heard of this scenario. The normal options are the facial nerve was weekend due to pulling and scraping the tumor or iny case a conscious decision was made to cut the nerve due to tumor bleeding.

I know it's a tough decision, but your son will be OK. The data and options in this process are brutal.

My two cents, if you can afford it, I would go to the surgeon and hospital with the most experience..."house". (Btw I went to Hopkins and loved the experience)

[S. Robin]

Thank you for all the information from many sources. It has all been very helpful. This site has been a gold mine. I appreciate ALL of you very much that took the time to post.

[mcrue]

Happy Labor Day!

As a general rule, I've seen time-and-time again where Acoustic Neuroma patients who've had successful radiation treatment will tend to recommend radiation treatment, while AN patients who've had successful microsurgery will tend to recommend microsurgery. It's human nature.

Same with hospitals and physicians. If a doctor only performs microsurgery for a living, then it's only natural for him to tend to recommend microsurgery. After all, it's what he's trained to do and it's what he's comfortable doing. Likewise with radiation. It's the same situation. It's only natural that people will have a bias.

For me, I'm biased towards radiation. Dr. Sheehan successfully radiated my 1.8 cm Acoustic Neuroma without cracking my skull open. I think that's amazing. I've researched the pros-and-cons online for 8 months day-and-night before I made the decision.  I think it's a crime to have microsurgery if an AN is under 1cm and is ideally located, but then again, I am not doctor and that is purely my opinion. Like everyone, I have my bias.

Dr. Michael Seidman, a prominent microsurgeon who spoke at my local ANA support group meeting last October, said he wouldn't even let his own adult son have radiation treatment unless it was clearly under 1cm. In Dr. Seidman's opinion, any Acoustic Neuroma over 1cm should be surgically removed unless you're very elderly or some other extenuating circumstance.

Keep in mind, there have been several successful radiation treatments for Acoustic Neuromas 3.5 cm and under. It all depends on who you talk to, and what statistics you follow, and how you interpret those statistics.

Many doctors who specialize in the same field will disagree strongly on the proper course of treatment. For example, my Acoustic Neuroma was fast growing. 4-out-of-5 radiation specialists highly recommended radiation for me; however, one world-renowned surgeon was strongly against radiation treatment in favor of microsurgery.

A benign Acoustic Neuroma that continues to grow is just as deadly if it's untreated. As far as age, I would consult with the radiation specialists They have treated teenagers. I've even seen little kids successfully treated with Proton Beam therapy. Get the facts from the experts and the stats. Regardless which treatment plan you select, you will likely have to monitor the results for the rest of your life in some capacity with lifelong MRI's. There are unsuccessful radiation treatments, just like there are tumors that unfortunately grow back after they "got it all" with surgery.

Keep in mind anyone can "cheerlead" or "sugarcoat" a treatment plan, but at the end of the day the very real possibility of serious lifelong complications do exist. The AN patient is the one that has to live with the consequences.  There are no "do overs."

Supporting people with facts and statistics has its place; however,  I can't stress enough how important it is to find the most highly qualified team of doctors who specifically treat Acoustic Neuromas and who work at the highest volume "centers-of-excellence" for Acoustic Neuromas who offer the highest success rates. I believe I paraphrased the ANA motto, which says a lot.

The Lasik surgery was a great example, as well as the selecting a qualified auto mechanic example that was featured in the ANA Notes newsletter. Highest volume. Highest success rates. Highest qualifications (specifically regarding Acoustic Neuromas).

Faith and positive thinking are hot topics. If someone is an atheist, do they have a less successful outcome? I think it's fantastic to question your team of doctors until they can't take it anymore. I wouldn't want to blindly put my trust and faith in my doctor. For example, look at Dr. Hrayr Shahinian who just recently had his license revoked. It's good to question authority.

There are no crystal balls. Even the very best surgeon in the world will likely tell you that he too will cut future facial nerves. It's inevitable. Even if the stats/risk are in your favor and under 5% , it's 100% if it  happens to you.

The decision-making process is one of the hardest times to go through. Best wishes and good luck in your search.
 
Warm regards.

[mcrue]

<snip>
Keep in mind anyone can "cheerlead" or "sugarcoat" a treatment plan, but at the end of the day the very real possibility of serious lifelong complications do exist. The AN patient is the one that has to live with the consequences.  There are no "do overs."
<snip>
Supporting people with facts and statistics has its place; however,  I can't stress enough how important it is to find the most highly qualified team of doctors who specifically treat Acoustic Neuromas and who work at the highest volume "centers-of-excellence" for Acoustic Neuromas who offer the highest success rates. I believe I paraphrased the ANA motto, which says a lot.
<snip>
Faith and positive thinking are hot topics. If someone is an atheist, do they have a less successful outcome? I think it's fantastic to question your team of doctors until they can't take it anymore. I wouldn't want to blindly put my trust and faith in my doctor. 

I feel as if you are suggesting I'm cheerleading and sugarcoating.  That was not my intent, nor was it to diminish the seriousness of the decision making process. 

My suggestion regarding going with faith was not to trust a higher power, but once the decision is made to have faith that no stone was left unturned in trying to make the decision  Then have faith in that process and try not to live in constant fear.  It is exhausting as most people facing this decision can attest to.

To suggest that someone not have faith in their physician is interesting.

I'm not anti-radiation treatment.  I have already shared why that route was not the right choice for me.  My "cheerleading and sugarcoating" was meant as support in that each of us have strengths and once you decide on treatment, whichever route you choose, you will take it a day at a time and have the ability to handle the outcome.  I was trying to find a way to alleviate some of her stress.

I am new to the board.  I will defer to those with more experience and hold my type of support.

I guess I should've been more clear. I wasn't referring to you, or Citiview, or anyone specifically for that matter. I actually praised (BamaStory) regarding Lasik. I was speaking "in general."

As far as faith is concerned, it was mentioned a couple times in this thread and God knows how many times on this forum. To be more clear, my point was that no one should have blind faith in anyone. They should always question authority until their heart is content. I hope this clarifies my point of view, as my intention wasn't to offend anyone. As I mentioned before ,we're all on the same team even though we may hold  passionate views. Regardless to say, as you've read, all points of view are encouraged and open for discussion.

Thank you for giving me the opportunity to clarify. ,As you know, tone, intention, etc. doesn't always translate very well over the internet. To the extent that my comments contributed to any misunderstanding, please forgive me.

All the best.