Trying to advocate for my father

[Shirlene]

Hello!  I'm new to the discussion forum, and posting in general. Please excuse any lay terms or otherwise, as I'm not a medical professional.  My father was diagnosed in 1995 with an acoustic neuroma.  At that time, he had an initial resection of the tumor, and lost hearing in his left ear.  His facial nerve was preserved that time.  His tumor recurred - which is atypical of ANs - in 1997, and he had two more resection operations as the tumor was growing so rapidly.  Also that year, he had gamma knife surgery, six weeks of daily radiation, and oral chemotherapy.  All treatments ended in 1998.  Since then, we have been in W & W mode, and he has had periodic MRIs.  He is a patient of the VA in Kansas City, MO.  We were recently told that the tumor has grown to a 6 x 6 and that there is nothing more the VA docs will do for him.  They stated (paraphrase) to him that he needs to transition to hospice as there is no treatment modality, no advances in chemotherapy, nothing that can be done.  Please HELP!  My father is not ready to give up the fight.  He wants to see his grandsons (my children) grow!  Does anyone have any recommendations for neurosurgeons that are excellent in dealing with recurring ANs?  We have been told that it is likely malignant - which is also atypical of ANs - but have never gotten a definitive diagnosis from anyone on that.  My dad is only 66, and while he is far more frail (uses a walker for mobility now due to the tumor's location near the brain stem) than what he was at the time of the inital diagnosis ... we want to explore any options we can.  Finances are a consideration as he does not have medical insurance.  Any help or recommendations are welcome, and most assuredly appreciated!

Feeling stuck in KC ....

Shirlene

[It is what it is]

Your dad is fortunate to have you!  I'd send all the information to HEI surgeons in L.A. and they could give you a free consultation.  He deserves to have second opinions.  My thoughts are with you both.

Karen

[CHD63]

Shirlene .....

I would second Karen's idea to send all of his scans and audiograms to House Ear Clinic in Los Angeles.  See:  http://www.houseearclinic.com/consultation/acousticneuroma  If anyone can help him, they can.  If he is 66, he should be on Medicare.  Does he not have any supplemental insurance with the military?

Thoughts and prayers.

Clarice

[Jim Scott]

Hi, Shirlene ~

I'm very sorry to learn of your father's recurring AN situation but glad you decided to join the ANA discussion forums.

I find it odd that doctors are claiming there is no treatment available for your father when it seems as if another AN resection would be beneficial.  Malignancy in acoustic neuromas is very rare so I would definitely want that checked out and verified one way or the other, as it could have a big impact on decisions made in the near future.

A Clarice suggested, HEI in Los Angeles will review your father's MRI scan and offer a free diagnosis and recommend treatment options by phone.  I concur with Clarice that under normal circumstances, your father should be eligible for Medicare which would cover the bulk of his expenses.  However, I assume this may not be the case, which makes matters more complicated and may require expertise that I simply don't have - but that other members may. 

In any case, don't give up!  This is surmountable and you and your father can get through it.  We'll do whatever we can to assist...and our members are fighters, too!

Jim

[Shirlene]

Karen, Clarice, and Jim - thanks to each of you for your responses!

I'm now battling with the KC VA Medical Center to obtain my father's records.  When I called to get the request form faxed to me, I was hastily assured by the VA employee that my request for records would go "at the bottom of the pile" under all requests from doctors and hositals.  I've contacted our local US Congressman's office for assistance, but even they told me that they have to provide one month for the VA to respond to their inquiry.  Unfortunately, I'm not sure whether or not we have a month.

My father was under the impression that the VA would cover his medical treatment, so he opted NOT to request Part B of Medicare.  Sadly, this was during a time that I wasn't as involved in his care as I am now, and I had no idea he had done so.  This was an unfortunate decision, to be sure. 

His tumor has been reported as malignant, and has recurred three times - all of which is rare, you're right Jim.  When he was undergoing radiation therapy in 1998, the radiation oncologist told our family that she'd done some research in a worldwide medical database, and had only found two or three other similar cases of an AN becoming malignant.  None of those patients were alive at the time.  So we've been dealing with a rare AN, and no one wants to help us anymore.  The KC VA Medical Center has "watched and waited" for 14 years, and they've done so to the point where now they claim there are no treatment options available.

I'm gratefuly to all of you for your comments.

Shirlene

[CHD63]

Shirlene .....

To be sure, I know nothing about how military insurance works so I sincerely hope some of our military forum members will respond to your post for suggestions on how to move through the red tape much faster than a month.

At the very least, is it not possible to get a copy of the CD your father's most recent MRI from the imaging center where it was done?  (By civilian standards, it is your right to have a personal copy of all testing, even though one's insurance paid for it.)

Thoughts and prayers for ways to speed up this process!

Clarice

[It is what it is]

Hi again,

Since you feel some urgency to receive a second opinion and the medical records are not available quickly, I'd suggest calling HEI and sharing the information you do have and asking what they would recommend at this point. 

karen

[millie]

Praying for you. 

[alabamajane]

Hi and welcome,,
I really don't have any expertise , medical or military,, but I think the suggestion to contact HEI is a very good start. I also agree that you should be able to get cd of latest MRI test without waiting for "all" the other medical records,, hospital or imaging center should burn that for you,, of course you will have to take your Dad I am sure to sign consent form on the spot,,,

Do you have a university medical school close to you that may be willing to listen to your story,, maybe they would be able to give some advice,,, may be that he will have to pay for doctor visit with someone to at least get another opinion,, especially if he can get that cd,,, seems VA is " writing" him off and that is very unfortunate for anyone,but especially a veteran!
Maybe local health dept.would have some type of program he would qualify for,, or contact local TV station and tell them of the injustice here,,, what a shame he has been treated so,,

I would also file request for records NOW either by him or congressman,,,, maybe contact them again too and ask again for some help,, sounds like pretty urgent situation,, you will be in my prayers,, best of luck and let us know,,,Jane

[It is what it is]

Any new news?

karen

[v357139]

Hi I am so sorry.  If it is malignant, they maybe try a hospital that is very good fighting cancer, not just neurosurgery?  I looked at US New and World reports.  The Mayo Clinic is number 4 nationally for cancer, is 356 miles from Kansas City.  Barnes Jewish is in St Louis, 233 miles and number 10 nationally for cancer.  If insurance is an issue, maybe write to the presidents of those hospitals and ask for their help.  You never know unless you ask.  Good luck and god bless.