Just diagnosed and terrified

[Marc]

Good Morning ANA Discussion Forum members,

Obviously, I'm new to this Board.  I was just diagnosed with a large left sided AN and it's now consumed my every thought.  I've likely had this tumor for 10 years without any symptoms.  I'm 40 years old, just finished qualifying for the Boston Marathon and, ironically, a Head & Neck Pathologist.  How and why are frequent thoughts.  Only during the last 3 months I've had a strange "icy-hot" or a sense of "fullness" in my face which wax and wanes in location and intensity along the the distribution of the trigeminal nerve.  In the last month I've noticed some hearing loss and tinnitis in my left ear.  Finally, an MRI has confirmed my fear.

My treatment option, as many of you know, is surgery.  However, my situation is complicated...I am an active duty Commander in the US Navy.  Therefore, in all liklihood, my surgery will be performed at the Bethesda Naval Hospital (now Walter Reed National Military Medical Center).  The surgeons here are fantastic and I have first hand knowledge of the amazing things they have done for our Wounded Warriors. Many cases are much more complex than mine with miraculous results.  But, the bottom line is this...they average approximately 10 AN cases a year and up to 4 cases of AN in my size category (4cm).  From this Discussion Forum and those that I have spoken to (Willing to Talk), the House Clinic appears to be the optimal center for treatment.  This has only added to my frustration and anxiety.  I have two little girls which are the center of my life.  I can't escape the "what if" questions from my mind.

Obviously, I won't make the final decision of the surgery location and it may not necessarily change the outcome or co-morbidities.  For what it's worth, I have found some comfort from this website and particularly from those that have volunteered as a "Willing to Talk" member. 

Thank you,
Marc     

[LakeErie]

I had a large AN removed surgically last Oct 6. After research, I felt a major neurosurgery center with an academic affiliation was the best place for me. I also wanted a surgeon with extensive experience. That combination is available in many places in addition to House. Once I was comfortable with my surgeon's plan for my surgery I committed to it. Luckily, I found what I looked for just twenty minutes from my home.
My tumor was resected with ~10% left on my facial nerve to preserve function and on my brain stem as it was too adherent to safely remove. This was the plan if the tumor could not be removed completely in a safe manner.
I believe like others on this board, that the most important factor in a good outcome is the experience of the surgeon - I say surgeon because my doctor operates alone, not as part of a team
with a neurotologist. Once my decision was made, my anxiety level gradually dropped as the six weeks to surgery passed. I was fairly calm by the day of the operation.
Good luck

[Jim Scott]

Hi, Marc ~

Of course I'm sorry you've been diagnosed with an acoustic neuroma - but I'm glad you opted to register and post on the ANA discussion forums. 

Your concerns are all fairly typical and so are your conflicting feelings about where to have your AN surgery performed. On this website's home page you may have noticed this statement: "ANA recommends treatment from a medical team with substantial acoustic neuroma experience."  This statement is based on the associations years of collective experience with AN patients.  Your hesitancy with the limited AN surgeries the doctors at  Walter Reed have performed is a valid concern.  Your thoughts of opting for House Ear Institute, instead, are equally valid. 

I would add to the comments in post #2 (from LakeErie) that there are many excellent doctors around the country who do marvelous work with AN surgeries.  I was fortunate to find one of those within 30 miles of my home. A Yale-educated neurosurgeon with over 30 years experience performing AN surgical removals.  He presented me with a plan to 'de-bulk' my large (4.5 cm) AN (to about half it's size) sever it's blood supply and then, following a 90-day 'rest period', to help a radiation oncologist 'map' 26 FSR treatments to destroy the remaining tumor's ability to grow by effectively destroying it's DNA.

Long story short: the (Retrosigmoid approach) surgery was very successful and I came through it with virtually no complications;  no facial paralysis, headaches or other problems.  My symptoms all disappeared almost immediately and my recovery was relatively swift.  The FSR (a total of 27 Gy over 26 sessions) went exceedingly well with absolutely no side effects.  Subsequent MRI scans have shown the beginnings of necrosis and shrinkage.  Today, six years later, I'm doing great.  Oh, and for what it's worth, I was 63 years old (and in otherwise good health) when I underwent the AN surgery & radiation. 

My point here being that although HEI has a splendid, well-earned reputation, they are not the 'only game in town', as it were.  However, to be frank, they are a great 'fall back' facility.  Had I not quickly found the excellent neurosurgeon that performed my AN surgery, I was ready to opt for House. 

As for the 'what if's"...we all go through that phase.  However, AN surgery, like much of life, is a risk.  We can calculate the risk, try to increase our odds of 'winning' and agonize over the crucial decisions that have to be made but no doctor can offer any guarantee of the surgical outcome (mine didn't) and, in the final analysis, all of our worrying doesn't really change a thing.  That isn't meant to diminish your concerns, which are valid and understandable because, as AN patients, we've all 'walked in your shoes'.  I just wanted to (a) welcome you and, (b) offer another perspective on your situation.

Please feel free to ask any question and allow our members to give your their support.  That, of course, includes me.

Jim

[Marc]

LakeErie, Jim

Thanks for your reply.  Your words were encouraging as well as uplifting.  This discussion forum has been most helpful.
Take care,
Marc 

[rvb755]

Marc, your story sounds almost exactly like mine.  I was 40 years old last year when I found out about my large left side tumor that was affecting my hearing.  I also have two little girls at home, and after finding out about the tumor I wanted it out as soon as possible.  I am not a runner, but 2 weeks before my initial MRI I had ridden my bike 62 miles in a local charity ride.  I am now 6 months post surgery and just had a follow up MRI that shows no signs of tumor.  I have full facial function although I am now deaf on the left side.  The weather in my area has been unseasonably warm recently, and I have been riding my bike again without problem other than a dry eye.  I understand where you are right now, and I want to encourage you that you will get through this and come out OK.

Rick

[LakeErie]

Marc, since you mentioned marathons, I thought I'd add that I have run regularly for a long time and, while 25 years older than you, my doctor OK'd my return to running at my 3 month post - surgery follow up. I have been jogging slowly since mid-January and have no difficulties with balance or endurance despite losing my 8th cranial nerve to tumor removal. Of course, with a tumor the size of mine, almost 5 cm., I had probably already been balance compensating for years.
I don't run marathons, but I believe others on this board have run them following surgery. Good luck

[stephSF]

Marc,
I had Translab at HEI 9 weeks ago with Friedman/Shwartz.  My dx was last November and my surgery was 1-25-2012.  The doctors at house operate EVERY DAY on our rare rumors.  They are experts with really terrific results.  Like you, my children are my world and my partner and I have six adopted kids ages 7,8,9,10,11 and 15.  My full time job is running the house and family.  That is why I chose surgery and to have House doctors do it.  I was not sure how much my insurance would cover but we didnt care caeca use we wanted to make sure I had people in my head who were highly experienced.  Well, I am doing GREAT .  I was never a runner, but I started to jog a little last week! (8 weeks post op). I am happy, energetic, helping my kids with homework, driving, and helping others as I am also a therapist intern.  I think if you go to House you canbe assured of a great utcome so you can move forward in your life and loves in no time at all.  This by far is truly the most terrifying time.  Once you wake up from surgery, the dread is gone and is replaced by the gratitude of having the surgical option to save your life.  Bless you and your family.
Stephanie

[james e]

I had translab surgery 2 years ago at Methodist Hospital in Houston. It is a training hospital through Baylor, and one of  the residents involved in my surgery was in the Air Force. SHE was already an ENT, and had been in training for almost 2 years, learning AN surgeries. She was out of Walter Reed, and was going to return there following her training. I asked a handfull of doctors how much training they had before they could get certified to so this surgery. Including medical school, the typical answer was 14 years to be certified. I am not telling you stop looking for the right doctor, but I can tell you that military doctors are trained to do this type of surgery. If they do one a month...you said about 10 a year...and they have been doing it for several years, that might be a pretty good number.


The military probably already has about 14 years is this doctors training. She probably went to Bethesda for medical school and she probably has no debt, because she is the military. Another 6 years, she retires, goes into private practice, and earns several hundred thousand dollars a year at a hospital. Most of the doctors I know have tons of debt. She is way ahead...all this training paid for by the tax payer.

If I was you, I would ask some more questions about the total number of AN surgeries your doctor a Walter Reed  has done. I think 10 a year is a lot if he/she has been doing them for several years. The neuron surgeon in Tucson that saved the congresswomans life after she was shot in the head was a military trained doctor. They are not a bunch of quacks. My next door neighbor is a former military doctor, and he really misses the Air Force. He says private practice sucks. I am a Viet Nam vet, was sent to Walter Reed, and got top drawer treatment. ASK SOME MORE QUESTIONS!



Every major population center in the U.S. has highly trained doctors that do AN surgeries. House is a great place, but they are not the only place. I thought about going there, but I live in Texas, and any follow up would be a problem, so I had it done in Houston. If you are in the Navy, I'm sure you don't have medical insurance. This is an expensive surgery, and a budget buster if you were going to pay for it out of pocket.


I would not have any problem letting a AN certified military doctor operate on me if they had been doing 10 a year for several years.

James

[jaylogs]

Marc, welcome to our little club! I am sorry you had to find us, but you'll be glad you did! There's lots of information to be had on here (and probably too much if you let it!)  Jim was correct in stating that House Ear Research (formerly HEI) is not the only ones who can successfully do these procedures. A lot of doctors fellowed out of HEI so they got their training from some of the top people in the world. I am a little biased, as I had surgery done at HEI.  You can send a copy of your MRI CD to them in the mail and they will do a free consult over the phone with you about your options.  They are quite good in this.  It only costs some postage and a little of your time, but at least its another opinion.  Just do a search for their website, and the find acoustic neuroma links, and somewhere in there there's instructions on what to do. Good luck with all this...hang in there!
Jay

[Tod]

Marc, welcome to the community and the rather exclusive Golf Ball Sized-Tumor Club.  The "nice" thing about a tumor this size is that surgery is the only option and one does not have to spend time worrying about the choices of treatment. Instead your choices are narrowed dramatically to only who and where. Truth to tell, there are not a lot of tumors of this type and size found and treated each year, so the experience factor can be somewhat limited.

My experience has been on abnormal side with a very long and difficult surgery - 32 hours to remove 90-95%. I recently went through FSR because the tumor was growing again,. It has a very healthy attachment to the artery. The docs at MCV/VCU here in Richmond were great and my neurosurgeon is also the chief of neurosurgery at the local VA hospital. My radiation oncologist is also on staff in both places. In any event, after a long surgery and a long recovery, life has moved pretty much back to normal two years later. I  was back at work after three months, but it did take longer than I would have liked to really get my strength and energy back.

A few years ago I was running marathons and ultramarathons. For some reason it became more and more difficult and the weight kept coming on, so by the time I went in for surgery I had gained 70lbs. I never really could understand what happened, but now believe that the compression of the tumor on the brainstem really affected me in dramatic ways. While I have not been pushing to get back to marathons yet, I am moving that direction to get back to trail racing. (I walked to work last friday, a total of 14 miles. In ten days I will be back on the Appalachian Trail for a week with our venture crew.)

With your position and a recent BQ, I would think you will have radically different experience and being able to get back to things much more quickly.

As scary as this stuff is, and I know this sounds odd, but for me this has been a great adventure and experience. I would not have missed it. It has not been easy, but I have learned a lot.

I consulted with House and locally. However, there were two things that guided my decision-making. The first was that I wanted to be close to home, if reasonably possible, because I have a complex family situation and my grand children and their parents were living with me at the time. Second, having spent my life in higher education, it was important to me have this done at a teaching hospital, again, if possible. This was very much an ethical issue with me. In the end, I could not be more pleased with the care and attention I have received.

Life is very good these days.

-Tod

[Marc]

Thanks gang!

Happy (well, not really) to join your "golf ball tumor club" Your comments have been helpful and uplifting.  I would love the opportunity to run sub 3 in Boston...but let's re-learn to walk before running.  I'm so eager to get this thing out of head.  Surgery date and location is not set yet.
I'll keep ya posted.
-Marc