New to the forum, multiple questions (Gamma, insurance, left side/right handed)

[buzneg]

Was diagnosed March 2nd via MRI with AN of 7 by 13mm.  Symptoms were 100% loss of hearing on left side and acute severe vertigo.

Was advised by a radiation oncologist that being right handed (right side dominant) and having a tumor on the left side is particularly not good.  It was part of why I am opting (if Blue Cross PPO will go along with it) for Gamma Knife this summer.  Was advised back in the early part of this by a neurologist that to go from mild symptoms around Feb. 24 to severe symptoms a week later with total hearing loss could indicate the tumor is growing quickly.  There is also concern that if our insurance changed and we opted for W&W, the next insurance company might cry "pre-existing condition - not our problem" if it does grow more, leaving me with a $100,000+  problem as opposed to a $7000 co-pay.

Was anybody else reminded of the right-left issue by their neuro dr in a consultation?  About facial palsy that could occur if it continues to grow?

Anyone else had this insurance (potential) dilemma in mind when weighing their options?  How long did insurance take to pre-approve if they did?

Thanks in advance.  Best wishes to all.

[Director]

Dear Buzneg,
  I am puzzled by a few things you were told and just want to implore you to get more than one opinion about your treatment options. Many medical centers will also be able to walk you through the health insurance issues.
Allison, CEO, ANA

[tarheelEH]

This is first time I hear about right-left dominant issue.  I visited 5 different pair neuro-ENT  doctors before the tumor was surgically removed. And I am right handed with left side tumor. None of these doctors even mentioned about right-left issue and I am ok after surgery. And many research papers indicate that AN’s growth rate is not linear correlated to symptoms, only periodically MRI scans can tell if tumor has grow rapidly, although attention/action is needed if symptoms getting worse.

[gary.s]

As the AN tumor grows on the 8th cranial nerve, it can push on the 7th cranial nerve which controls facial muscles and taste. When the tumor gets large enough, you may feel numbness on the AN side of your face. This does not happen to everyone. My tumor started growing very fast, and I lost the ability to taste most things and developed numbness on my AN side of the face. This all took place within a 6 month period of time, and I was advised by my neurologist to have Cyber Knife radiation immediately. I finished my treatment about 6 weeks ago. I agree with Allison, get more than one opinion.

Gary

[buzneg]

I did actually consult with 2 different neurologists (one in Florida and one in Nashville); two different neurosurgeons (one in Nashville and one in North Carolina); plus an ENT in Tennessee and a radiation oncologist in North Carolina.  A total of 6 opinions have been rendered from 6 different respected physicians. Plus two different MRIs - one without contrast and a higher powered one later without and with contrast. (included a "temporal bone cut" whatever that is) And a CT scan before the first MRI.

One of the consultations was a 6.5 hour drive each direction.  This really does not seem like there was any corner cutting in the process.  If anything, the due diligence in the process was by the book, as instructed by the first contact with a neurologist in Florida.

[buzneg]

Having already lost 100% hearing on one side, any chance of facial paralysis on top of that make me lean toward getting this taken care of sooner than later.  Those who would rather take the wait and see approach, I respect your decision but in my case don't think it's the way to proceed.

More relevant info:
https://www.facialpalsy.org.uk/causesanddiagnoses/facial-nerve-tumour-neuroma/

[notaclone13]

Buzneg, sorry to hear about your diagnosis and sudden hearing loss.  You are in good company here as we are all in the same boat. Sudden hearing loss is quite common with ANs and often occurs as the first symptom.   In some cases a course of prednisone can reverse the hearing loss. Did any of your doctors mention this option? Unfortunately, vertigo is also a symptom of ANs and is very scary.  I keep Dramamine on hand all the time and find it to be very helpful.  I realize that you have seen a neurologist and radiation oncologist, but you I agree with Allison, you really need to find someone that specializes in this type of thing. If you don't mind mentioning where you live, someone on the forum may be able to direct you to someone more familiar with ANs and their treatment.

[buzneg]

Buzneg, sorry to hear about your diagnosis and sudden hearing loss.  You are in good company here as we are all in the same boat. Sudden hearing loss is quite common with ANs and often occurs as the first symptom.   In some cases a course of prednisone can reverse the hearing loss. Did any of your doctors mention this option? Unfortunately, vertigo is also a symptom of ANs and is very scary.  I keep Dramamine on hand all the time and find it to be very helpful.  I realize that you have seen a neurologist and radiation oncologist, but you I agree with Allison, you really need to find someone that specializes in this type of thing. If you don't mind mentioning where you live, someone on the forum may be able to direct you to someone more familiar with ANs and their treatment.

I specifically told the emergency room physician, that I saw online that people were prescribed prednisone and antibiotics for sudden hearing loss (second day of serious symptoms) .  She acted like she had never heard of such a thing and basically did nothing until I had the MRI around 5 hours later showing the AN.  But still no prednisone.  Three different doctors I saw there in 4 days.  Still no corticosteroids.  Should I be seeking legal advice about medical negligence? 

BTW, my pending GK is to be done by one of the top prolific GK programs in America:
https://www.elekta.com/meta/press-intern.html?id=acdd863a-c416-4b3c-bf22-da96ea426cd8


The answers to your other questions are above your post - awaiting mod approval.

[juliawilson]

The medical center where I normally get my care also uses gamma knife. It is an older form of radiation and employs screwing a halo into the skull. I got weak just thinking of that. I traveled several hours away from home to get the newer CyberKnife--a comfortable plastic mask keeps the head in place--no screws. Also, it was done by a team that does a lot of AN work--very important because experience counts. Both centers were in my insurance network, and the carrier did not even blink at the cost.

[buzneg]

The medical center where I normally get my care also uses gamma knife. It is an older form of radiation and employs screwing a halo into the skull. I got weak just thinking of that. I traveled several hours away from home to get the newer CyberKnife--a comfortable plastic mask keeps the head in place--no screws. Also, it was done by a team that does a lot of AN work--very important because experience counts. Both centers were in my insurance network, and the carrier did not even blink at the cost.

Was the CK "fractioned" into a series of visits?  I can't do that at Wake.  I'm in the middle of TN, they are in the middle of NC.

I hate the thought of something being screwed into my gourd but if it's only once in my lifetime and they have some drugs to make me not care...

[buzneg]

13 days away.  Blue Cross signed off.

I'm still a little weird about having that frame thing screwed into my melon.  Anybody else had GK and did they give you some pills or something to stay calm?

Someday I can tell my grandkids (if I have any) that not only did I walk 5 miles to school, uphill both ways, but that the doc screwed a doo-dat into my head once.

 

[rupert]

 They don't really screw the frame to your head. The pin sights are well numbed before hand and the pins on the frame are tightened to hold it in place.  For the vast majority of people this is a non event.  Don't make too much of it but, if you feel anything at all please let them know.  They will take care of that promptly.  Some places will take a picture of you and the frame for a memento.

[notaclone13]

Hi Buzneg, it’s good to hear that all the details have been worked out and your GammaKnife is scheduled. By my estimate you will be getting it done around Friday, June 29th? If so, that gives you the week-end to recover and travel back home. I think you picked an excellent place for treatment. Please post on the forum after your radiosurgery to let us know how it went. I have read many posts by folks that had GammaKnife and they seemed to have had minimal issues with the frame. Apparently, they sedate you so that you are pretty much in LaLa land while they put it in place and they apply a local painkiller at the pin sites so that you don’t feel them.  I am confident that you are going to do just fine because you sound like a very determined and positive person. Wishing you smooth sailing through the process and a fast recovery.

[Blw]

The headframe is the biggest deal of the whole procedure and it's not a big deal. I'm not sure why they do it this way, perhaps it has to do with the type of anesthesia, but it is just like a pit stop at a car race. They'll give you a light anesthesia, numb the sites, and then will have multiple people put that thing on in about five minutes. I was at UVA so I had about six people, a couple were residents. I was talking to them the whole time, probably not enough anesthesia. One of my pins did land next to a blood vessel, so the local wore off eventually and that was annoying, kind of like having a bad fitting hat or helmet. But it is reassuring that they use the frame to bolt you into the GK machine so that the aiming is precise. I think they actually use the frame to help line to radiation up the way they want it with the tumor. The frame is nothing to worry about.

[buzneg]

Apparently, they sedate you so that you are pretty much in LaLa land while they put it in place and they apply a local painkiller at the pin sites so that you don’t feel them.

Apparently regulations are different in different states and in NC there are restrictions on anti-anxiety drugs for people released the same day as out-patients.  Thus if I understand correctly, Lorazepam (Ativan) is pretty much all they can administer for the MRI and GK.  How much would you guys estimate in MGs they can give a 6-foot and 250 pound dude?  I can't breathe too good when laying flat on my back and get freaked out about it.  Lots of sedatives and some oxygen might help.  It did for the last MRI but that was in TN, not NC.

I saw somebody mention 4mg on another forum.  Would that = "LaLa land" ?  (I really could use a trip there for that morning)