Mom of 21 yo, Louisville, KY, questions, vents

[ANmom]

Hi all.  I am a mom of a 21 yo newly diagnosed AN patient. She would have been entering her first semester of her senior year of college in August, majoring in biology with a minor in chemistry.  She wants to go to vet school.  We live in Lousville, Ky.

Her AN is approx 2cmx2cm and is pressing on her pons/brain stem.  So far, thank goodness, her only symptoms are lower frequency hearing loss in her right ear and occasional dizziness.

Because of the location, size and her age, the docs we have talked to so far are in agreement as to the speediness with which they want to get it out.

Louisville has a great medical community and if she needed heart surgery or hand surgery I wouldn't hesitate to stay here.  But we are not known for AN surgeries.  I am having a hard time deciding where to go/who to see.  I have an uncle who is an emergency physician in Connecticut and is an alum of University of Michigan and has ties to a Dr. Arts there who has a great reputation.  My uncle wants us to go there.  Period.  No other discussion of anywhere else.  We are in the process of setting up a consult with Dr. Arts and his neurosurgeon Dr. Thompson.

My best friend (my maid of honor/honorary god mother to my daughter) is also an emergency physician in New York and all of her colleagues suggest Vanderbilt or Cincinnati.  We are in the process of setting up a consult with Dr. Weaver and one of his ENTs Dr. Wanna or Dr. Bennett.

I'm so overwhelmed and confused right now, I don't even know if I want to try to call Cinci, but Dr. Pensak seems to have a great reputation as well.

My uncle who is always my go to guy with medical issues has pretty much closed the door on discussion of anything but U of M.  I am feeling very alone and overwhelmed.  I know you're probably asking well, what about your daughter, what does she want?  Well, she's pretty much resigned to go wherever we decide and has deferred her decision to us/me.  (I'm a widow, btw, her dad passed away of cancer when she was 7 months old, so it has always been just the two of us.)

I'm not sure what I'm asking right now, but just needed to feel like I could talk with someone and here you are.  I guess if you have any opinions on any of the docs mentioned, I'd be grateful.  Otherwise, thanks for listening/reading.
ANmom

[Jim J.]

Sorry to hear of your bad news. I'm 58 and was diagnosed over a year ago and decided to have my surgery at House clinic in L.A. I live in Atlanta and It's a long way but after researching and reading posts on this forum I decided it was right for me. If you send them your M.R.I. a doctor will call you with a consultation at no charge.
I know there are others out there that will do a good job and are a lot closer but I would at least get the free consultation as another opinion. What I understand is that House actually pioneered the surgical techniques used today for A.N. removal. The doctors there have done several of these surgeries.
My surgery is there at the end of the month. Wish me luck!

Jim

[LakeErie]

There is no way you can decide what's best at this point. You and your daughter need to select which physicians to meet with and let the professionals review the situation. Once you have the opinions on what to do from a few specialists, and have an idea of how you feel about each doctor, you can decide how to proceed.
As you continue the process of appointments you will become more comfortable with the process. Is there any reason for the need to move quickly? Usually there is time to evaluate recommendations and decide carefully. If you choose major neurosurgery centers and doctors with skull base tumor removal experience in general, and AN's specifically, you will be in good hands. Obtaining a radiosurgery consult may also be of benefit. Good luck.

[Pam Fraley]

AN Mom,

I am a patient of Dr. Arts.  I am very confident in both him and Dr. Thompson.  I am "wait and watch" but have talked to others who are their patients and have had surgery.  I think you will be very pleased with Dr. Arts when you meet him.  If you would like more info you can PM me and I'll send you more details.  Also, you can find lots of info on Dr. Arts on the U of M website and there is also a video in which he talks about AN surgery.

Best of Luck to your daughter.

Pam

[ANmom]

Thanks so much, Jim, I have read much on HOUSE and have considered it.  I guess I'm currently feeling a bit overwhelmed with just trying to deal with the three options we currently are looking at, such that I am hesitant to add another to the mix.  I think that, and, traveling halfway across the country is also a bit daunting.   I wish you the greatest success in your upcoming surgery!!!  And thank you so much for replying!

LakeErie, apparently the size of her AN and it's "denting" of the pons, as well as her current lack of facial nerve symptoms, are the reasons we are receiving for wanting it out quickly.  This is according to our local ENT/neuro-otologist, a neuro-radiologist who looked at her MRI and CT as a favor, and Dr. Arts at U of M.  They all seem to concur that soonest is best, waiting and watching is not even in the ballpark of options.  Which, I guess, is the main source of my stress.  I feel like I don't have TIME to research all available options.  I get the feeling the decision should have been made yesterday.  Meanwhile, despite that, I am still hurrying-up-and-waiting for our current possibilities to get a darn consult scheduled!  Sorry, don't mean to yell at you. 

Pam, I really, really appreciate your information and your offer.  I may very well take you up on that!  That is so very kind and helpful of you.  I have looked at the website and have seen the video you mention.  I, actually, am very impressed with at least one aspect of Dr. Arts....Dr. Thompson tried to schedule our consult in September and Dr. Arts told him "no way!  The soonest you have."  I feel like he's already our advocate.

Thank you, thank you all for your replies and kind words.  This really does help, just knowing you are out there and that you UNDERSTAND!
ANmom/Juliet

[phantagrae]

Have you considered radiation at all?

I'm not trying to dissuade you from surgery or anything, but if her AN is treatable with radiation, it is certainly less disruptive in terms of surgical recovery, etc.

But as others have said, only you and your daughter can make the decision about what feels right.  And as urgent as you may feel, it's still not a decision to be made in haste.

When I was first diagnosed, my first thought was to have surgery because I thought it best to just get it out.  But as a musician, I felt that, for me, the risk of damage to the facial nerve or auditory nerve, and the potential of lengthy recovery time, was not worth it.
While I do wish the tumor was not still in my head, for me the benefits of radiation treatment outweighed the issue of leaving it in there.

Praying that you and your daughter are able to have some peace and clarity as you consider your options.

[Petrone]

AN Mom,

Sorry to hear about your daughter's AN.  Do all your research and get second, maybe third, opinions before making any decisions. But I would guess that the experts will say that at the young age of 21 the long-term risks of radiation are much greater than they are for some of us on this forum in our 50's and 60's who've undergone radiation. 

I wish you and your family all the best,
Petrone 

[LakeErie]

ANMom - I am not contradicting your doctors, but I have some insight into the need for acting quickly. My tumor was close to 5 cm and I had significant mass effect on both cerebellum and brain stem. The brain stem effect had shifted the position of the 4th brain ventricle, and I was given 6 weeks to have surgery or I may have required a brain shunt.
I am in no way  advocating wait and watch, but am not sure you and your daughter have to decide something so important immediately. You probably have time to meet with more than one surgeon, consider the information you get, and decide what seems best after due consideration. That process in no way will take more than several weeks. I was given a six week deadline by two very experienced AN surgeons and easily made up my mind between them in 2 weeks and scheduled the surgery. I was prepared to see additional surgeons, but after the 2nd appointment and a few days' consideration, I knew who I wanted to operate on me. I am sure your daughter has enough time to carefully consider her options. There is no rush in almost every instance. Ask the surgeons for a timetable, how much time do they think she has to make a decision? Good luck.

[ewchisek]

I agree! I know what you're going thru, you just want it over, but taking time to seek a few consults may be worth it. And honestly, I am not a dr, but when I was diagnosed I did not have hearing loss, nothing wrong with my facial nerve, and very little dizziness. In my case it wasn't about what symptoms I didn't have...in the end it really just depends on the exact location of the tumor...I would just advise to ask many questions and be pray for the best outcome possible. As you can read on here everyone has a different journey! I wish your daughter the best and she's lucky to have a great mom!

[ANmom]

Indeed, Petrone and phantagrae, the consensus seems to be that radiation is not an option due to her age and the size of the AN.

We met with the local neurosurgeon this week and are headed to U of M and Vanderbilt next week.  The local (Louisville) neurosurgeon suggested partial resection around the facial nerve to preserve it's function.  And if it seems to grow later on down the road *then* radiation may become an option.  He did, however, state that there was a very low likelihood of preserving her hearing in that ear, so they want to do a combined approach of translabyrinthine AND Retrosigmoid. 

I thank you all so much for your insight.  I agree, LakeErie and ewchisek, garnering multiple opinions is the best way to go!  Right now we're scheduled for 3 total - I hope that will be sufficient to choose from.

While I feel like we are leaning toward U of M, my daughter is concerned about the long car ride home (6 hours).  All research and the local neurosurgeon said she will most likely be very dizzy and nauseous after surgery due to the cutting of the vestibular nerve.

Has anyone had experience with a long car ride within days after surgery?  Any tips on how to make it as pleasant as possible?  Frequent stops?  I'm not sure exactly how many days after, but it sounds as though she will be released at the earliest 3 days after surgery.  We'll check with the docs, of course, regarding how soon she will be able to travel.

Thank you again, everyone!  Your insight is invaluable!

[Jill Marie]

Hi ANmom, 

My surgery was 21 years ago but somethings never change.  I was in the hospital for 5 days then had a 5 hour ride home.  Thankfully my Mom was still alive at the time as she gave me a couple of cans of 7up to help me get through the trip, yep, a simple can of pop made the trip bearable.  Hubby bought me something like 7up but it didn't do the trick.  Our youngest was playing in a baseball game when we got to town and hubby asked if I wanted to go home or stop by the game, I felt good enough to stop by the game so hubby could see him play, I stayed in the car of course.  Take Care, Jill Marie

[It is what it is]

This would be much more difficult for me if it was happening to my child instead of to me.  Your daughter is fortunate to have you.  I hope you have support as you support her.  I agree with Jim.  Why not send the MRI to House a get a free consult?  My decision on where to go for surgery was based on who had the most experience with these tumors.  The drive home was 13 hours.  We chose to do it in two days.  A huge soft body pillow was magical.  It cushioned the ride home nicely.  We made stops along the way to see the sights and stretch our legs.  I slept a lot but didn't experience any problems.  I wish you both good things. 

[bgaard9]

Hello,
My 20 yo son was diagnosed on Jan 4 2013 and had surgery in Kansas City on February 12th. We went through lots of worrisome days considering traveling for surgery and talking to different Doctors, but once we met the neurosurgeon here in town we decided to stay close to home. We did send an MRI to House and got a great phone consultation that included frank advice on where to go if we decided House was not for us.
He had a trans-lab procedure that last about 14 hours.
He was pretty miserable for the first 10 days or so, 6 of those in the hospital. The steroids to reduce swelling really interfered with his ability to rest.  I do not think he would have been significantly more uncomfortable if we had been traveling.
He ended up ready for a part time job (as a bank teller) by about the first of April and returned to college in August. He is a nano-scale chemistry major and reports that he feels significantly better when studying now than he did last fall, like maybe the impact on his health from the tumor was more than he realized at the time.
He had an implant installed for a BAHA right before he went back to school and didn't like the haircut that left him with.
It seems like the intense worry of last winter was a long time ago.  I think that a college age kid going through this has some special concerns but also a superior ability to cope and recuperate.  I know that my son was quite happy to delegate most of the worry to his parents and had confidence that his parents would make good decisions.  He was fully informed about the options we were considering and it seemed like he preferred for us to have the responsibility of making a final decision.
I hope things go as smoothly as possible and the potential bumps in the road are avoided.