Just diagnosed 5mm AN - military academy

[bobf2000]

My son is 25 years old and was just diagnosed with a 5 mm AN (supposedly very small). He had not noticed any symptoms (tintinitis or hearing problems), but the AN was detected due to an MRI. (My son is entering his final year at the US Naval Academy, and was undergoing extensive medical testing required for entry to the naval aviator program.) The Navy is planning to schedule him for surgery (date is TBD) by a Navy surgeon at Bethesda Navy Medical. We do not know which surgical approach is planned, nor do we know (yet) what level of experience the surgeon has with ANs. (Surgical removal is supposedly mandatory for entry to the aviation program).

Some of the questions I have are these:

1. does anyone have thoughts/experience on appropriate treatment for an AN of this small size?

2. I understand that the recommendation of ANA is to use a surgeon that has "substantial" AN experience. Can you say what constitutes "substantial"?

3. Do you know anything about the level of experience of Bethesda Navy Medical with ANs?

4. Do you have any recommendations of surgeons in the DC area with substantial experience?

5. At this point, we're a bit concerned that the Navy will not allow surgery to be done by anyone other than a navy surgeon. Do you know of anyone (active military, or even someone in a military academy) who was in that situation? What were their options?

I appreciate everyone’s input.

Thanks very much!

Bob

[lori67]

Hi Bob.

I have some input on a few of your questions.

I'm not sure what Bethesda's numbers are as far as AN's, but I can say that Portsmouth Naval Medical Center in VA averages about 5 skull-base surgeries a year.  That would be all skull-based surgeries, not just AN's.  I'm not sure how Bethesda's numbers compare, but they're probably not a whole lot different.  The neurotologist that I see in Portsmouth is head of some nationwide organization of neurotologists (not sure what it's called) and he knows all the surgeons and they all know him.   Everyone I've asked (military and civilian) speaks very highly of him, which leads me to believe the neurotology department for the military as a whole is pretty well supervised and skilled.  My personal opinion is that as long as you have an Active Duty or Military Retiree doctor, you are in good hands.  The civilians that the military contracts with do not give me that same feeling (Tricare contracts with the lowest bidders for civilian doctors, so you don't always wind up with the cream of the crop).  Like I said, that's my opinion.

There are a few forum members that have had their treatments at military hospitals and I'm sure they'll be chiming in here soon with some insight.  I had my surgery at a civilian hospital due to where my husband was stationed at the time.

As far as civilian doctors, I see Dr. Daniel Coelho at VCU in Richmond and I think he's wonderful.  Nice guy and very experienced.  I can send you his number if you'd like it.  I can also send you the name and number of the Navy doctor I see at Portsmouth if you'd like. 

Good luck to your son and GO NAVY!!

Lori, Navy Wife, (RET)   

[Jim Scott]

Hi, Bob ~

Although I'm sorry your son has been diagnosed with an acoustic neuroma, welcome to the ANA discussion forums.

I'm not very knowledgeable regarding military medical practices and protocols but I'll try to answer your first two questions as best I can. 

1. does anyone have thoughts/experience on appropriate treatment for an AN of this small size?

Usually, at only 5mm, the patient is advised to 'watch-and-wait' (observe) the AN to watch for growth.  It's not likely, but sometimes these benign tumors remain stable and don't continue to grow, although I wouldn't count on that. The observation is conducted via annual (sometimes, semi-annual) MRI scans. Smaller tumors (under 3 cm) are also generally amenable to irradiation but if the Navy mandates the AN be removed surgically, observation and/or radiation are moot points.

2. I understand that the recommendation of ANA is to use a surgeon that has "substantial" AN experience. Can you say what constitutes "substantial"?

It's a somewhat subjective term but my opinion is that the doctor should have at least a hundred AN surgeries on their resume.  My neurosurgeon (in his 60's) had 30 years experience with AN removals and many hundreds of successful surgeries.  I don't believe its a coincidence that I enjoyed a very successful surgery experience on a large (4.5 cm) acoustic neuroma. 

I regret that I can't help you with your queries regarding the military procedures, rules, etc or D.C. surgeons that have substantial experience with ANs.  I trust that subsequent posters with military backgrounds will be able to offer you that kind of specific information and I wish your son success in his Naval aviation career.  His service is appreciated and honored, here. 

Jim

[Tod]

Bob,

Hello and welcome. You have already received excellent information from Lori and Jim that I cannot really add to other than to say that Dr. Coelho at VCU Health Systems is one of my surgeons and as Lori says, he is wonderful. He is also very responsive via email and does not mind his email address being shared. The neurosurgeon he works, Dr. Broaddus is excellent...my sister calls him "Rockstar" and he is also chief of Neurosurgery at Hunter Holmes MCGuire Veteran's Admin Hospital. Perhaps the Navy will at least let your son consult with him.

Good luck!

-Tod

[sarahinPA]

Hello Bob, I cant offer advice about the DC area, but I can throw out this bit of information..

About 2 years ago I was looking to join the military, this was after I was diagnosed and treated with Gamma Knife for a 2.2 cm AN. This was much larger than your son's and I think that you all should discuss gamma knife as an option, as this is typical for such a small AN, or the watch and weight approach, since it is so small. As i write this I think, I dont want to sound rude at all, any size AN is a big deal, and a life changing experience, and I am so sorry to hear that your family is going through this.

Back to the military stuff. from what I read on national websites, tumors located within the brain and skull are acceptable, as long as they do not debiliate the person from any of their job duties. You too can find this information with a simple google. Tumors outside of the skull are also OK in some situations. With that said, if your son is not having any issues right now, I dont know how the Navy has the right to force him to have surgery if he is not ready.

We, as Americans have rights, and one of those rights is to refuse medical treatment, he may want to exercise his rights before going under the knife so quickly. I hate to sound pesimistic, but he also may want to consult someone who is familiar with Military law to ensure his rights are being upheld.

As for surgeons to look for, this website provides a nice overview of some surgeons to contact, and others on here may give some other suggestions and even tell you about surgeons who will view scans for free and offer consulataions over the phone.

I personally had my gamma Knife In Pittsburgh by Dr. Douglas Kondziolka, whom is a pioneer for GK in the AN world. I'd be happy to share his contact information with you, but rest assured, there are many AN doctors all over the country that are great! I am having my micro surgical removal next Friday the 29th by Dr. Paul Gardner in Pittsburgh also ( I was one of the unllucky 2% who had regrowth after GK).

Good luck and keep us updated, but if I were you, I would look into your son's rights as a patient, instead of an active member of the military.

Ps. Thank him for me for serving our country!

Sarah

[lori67]

Sarah,

It's a little bit different than "real life" as far as rights go when you're in the Navy.  Yes, he can refuse the surgery, but then the Navy can also refuse to let him into the program he wants.  He's not really in a position to argue with Uncle Sam right now.

As far as being allowed into the military with an existing tumor, brain or otherwise, it would require a medical waiver and through investigation by the Navy docs before it would happen.  I've seen people be turned down for much less.   But, that's neither here nor there in the case of Bob's son, since he's already there.

Bob, I would suggest talking to the doctors about all the treatment options available to your son so he can decide which one is right for him in the long run.  He'll kind of have to weigh the benefits and risks of each option and see which one he's comfortable with.

Good luck to your family.  Not an easy position for him to be in, I'm sure.
Lori

[Dolwin]

I'm just going from what I do know about Bethesda from reputation, but keep in mind that when the president goes in for surgery, it is almost always at Bethesda Medical Center.  It is (probably) the best-staffed military medical facility in the country due to it's unique location in the DC area serving the highest ranking military and civilian leaders in our nation.  Your son should be in very good hands there.

[GM]

Bobf2000,

I'm sorry to hear that your son has an AN, but to have this discovered while he is in the military is a blessing.  As an Air Force vetran (23 years), my AN was discovered while I was active duty, so hopefully I can provide some insight for you; I was also a helicopter flying Crew Chief so I have an inisght on the flying side of the house as well...your son is in the Navy...but the rules are probably similar.

1. does anyone have thoughts/experience on appropriate treatment for an AN of this small size?  At 5mm, this is truely a small tumor, if your son was a civilian, he might actually be advised to "watch and wait" to see what the tumor does...some tumors don't grow at all.  But, since he's in the Navy aviator program he will not pass a "Class A" flight physical with the AN as it affects both hearing and balance...both crucial for an aviator.  That's probably why they are recommending removal of the tumor.   Surgery or radiation treatment of the tumor are both options, but again the Navy probably will not pass him (for the class A physical) with the small 5mm mass still in place.

2. I understand that the recommendation of ANA is to use a surgeon that has "substantial" AN experience. Can you say what constitutes "substantial"?  In my opinion that would mean success rate, complications after surgery, how the facial nerve would be managed during surgery...etc.  Even though your son is in the military he DOES have an input on his treatment.  He should be advised of options, and he should be a participant in his treatment options.  I recommend that you look at the hospital/patient bill of rights (yes..even military hospitals have them)     

3. Do you know anything about the level of experience of Bethesda Navy Medical with ANs? I'd recommend that your son go in with questions for the doc...write them down and get the answers at the appointment.  If possible have someone go with him to help document the answers and also to help get the questions answered.  As with ANY doctor, if they don't want to answer your questions fully...there's a problem there!  You should be able to research your military docs as well...in Virginia they have a web site that allows you to search doctors experience/reputation.  Here is the link with the doctor that I saw at
Naval Medical Center Portsmouth:
   
http://www.vahealthprovider.com/results_generalinfo.asp?license_no=0101241725

4. Do you have any recommendations of surgeons in the DC area with substantial experience?  Again, your son does have an input on his treatment.  I was treated at the University of Virgina and was put on Medical TDY (temporary duty) orders for treatment.  Since your son is in the Naval Academy i'm not sure how this would affect his status there.  I suggest contacting the Academy to see how this will affect his admission.  If he has surgery, there is a recovery time period.  What would the difference be if he went out of state for a second opinion/treatment?  Dr. Jeffery Kuhn is the head of ENT at Portsmouth Naval Hospital, and is a retired Navy Captain (O6), he was my doctor when I was treated and is now retired and is there as a civilian doctor.  Here is the link to the Portsmouth Medical Center:

http://www.med.navy.mil/sites/nmcp/Patients/ENT/Pages/default.aspx

5. At this point, we're a bit concerned that the Navy will not allow surgery to be done by anyone other than a navy surgeon. Do you know of anyone (active military, or even someone in a military academy) who was in that situation? What were their options?   Again, being involved with the treatment is a RIGHT of your son, he should be advised of all treatment options, not just one.  The local (on base) TRICARE office could also provide some insight on the option of using off base surgeons if that is the route that your son decides to go. 

On another note it is not uncommon to have a young troop not ask a lot of questions as they are often intimittated by rank.  The doctor is an officer, and at this point in his career (especially at the Naval Academy) he may not ask a lot of questions possibly intimidated by the doctors rank.  If your son has a class advisor, or Command Master Chief (Navy E-9, enlisted), this might be a good place for him to start.  This is why military school have these positions to help students deal with stressful situations.  Your son should be allowed to educate himself on the treatment options and be a participant in decisions.

I hope this was helpful for you...best of luck to your son.

Gary