ONE YEAR MRI COMING UP & HAVE QUESTIONS?

[BB]

I KNOW THIS MAY BE A CRAZY QUESTION, BUT HERE IT GOES.  IF THE AN HAS COME BACK AFTER REMOVEAL OF MY BALANCE NERVE, WHERE DOES IT USUALLY COME BACK TO.  EVEN IF THE DOCTOR SAID HE GOT IT ALL, I KNOW THE ODD'S IS IT MAY COME BACK OR WE WOULD NOT GO THROUGH THESE MRI'S. I JUST WONDERED DOES IT COME BACK ON ONE OF THE OTHER NERVE'S, OR IS IT NO ONE REALLY KNOWS WHERE THE CELLS CAN GO, LIKE CANCER.  I'M THINKING OF WAITING TILL JULY FOR MY ONE YEAR MRI.  DOCTOR SAID THAT WOULD BE OK.  HAD SURGERY JUNE 15.  MY HUSBAND WANTS ME TO WAIT EVEN LONGER, AS WE DO NOT HAVE INSURANCE NOW, AND I THINK HE CAN'T DEAL WITH THE WHAT IF'S.  THANKS IF ANYONE CAN ANSWER THIS QUESTION. BB

[ppearl214]

Hi BB,

Well, if you can hang in there... let's see what the MRI shows first.  It is my understanding (and someone correct me if I'm wrong), but the "sheath" cells of the nerve that cause AN's do not "spread" like cancer.  Step by step, inch by inch! Prayers for a wonderful, clean, "booger free" MRI! 

Hang in there.
Phyl

[Boppie]

BB, No question is crazy.  If an AN comes back (begins growing again) it is because all of the cells were not completely removed.  But this is not the usual course of things, unless the doctor has told you he couldn't get it all out.  AN cells are not cancer cells in composition or origin.    The repeat MRI's are for your reassurance that the AN is gone.  Some folks with a different form of benign tumor (NF2) have reoccurances of tumors in other parts of the head or other parts of the body like the spine.  Waiting a little longer for the MRI won't make a difference. The odds of having your AN grow back are very small even though you read about several on this forum.  Keep in mind that the group reporting here represents a tiny percentage of the population. Even though we were unlucky enough to have an AN in the first place, we have a lesser chance of having the thing grow back.  

Next point:  AN's grow at 1-2mm per year.  Even if one "grew back", it would be so small that a doctor would put you on wait and watch for quite some time.  

Next point:  AN MRI will be cheaper than full price as an outpatient at a hospital if you state that you don't have insurance coverage right now. The doctor would need to order the MRI as a necessity.  So, leave it in the doctor's hands.  He said it wouldn't hurt to wait.  

I read that you wanted to work.  If you still have balance problems you might want to wait a while longer.  Working at a new job right now might create stress for you, your husband, and recovery.   Try to relax and get your balance adjusted.  I think Tai Chi sounds interesting.

[Pembo]

My doc wanted me to have an MRI at 2 years and I refused, I didn't want to pay my out of pocket costs, I didn't want to know if there was anything there, I just didn't want to think about my an at all last year. And that is what I did. My doctor understood and I had a very stress free summer last year. Now this spring I had an MRI~and the stress was tough, the what-if's resurfaced and the bills will be here soon.  Luckily everything was clear!!!

Stay strong and put it off if you need to, especially if you have no new symptoms.

[Jim Scott]

BB:

'Boppie' offered you some excellent advice.  I can't do more than tell you that I believe she was absolutely correct - on all points.

Acoustic neuroma tumors are not malignant (cancerous) and do not metastasize.  Should you ever experience a re-growth, it would be in the same spot as the original tumor.  MRI scans serve to help the doctor 'observe' the affected area and spot any re-growth, which, unfortunately, does occur in a small percentage of cases, and, as Bobbie stated, also reassures you, the patient.  If you ever experienced a re-growth, it would be relatively tiny and not require any 'emergency' action, again, as Boppie stated.  The cost of an MRI would be discounted if the hospital is informed that you have no insurance and the scan is performed as an outpatient.Hospitals will usually accept a payment plan spread out over a year but you have to request it.   Frankly, I can't see why you can't wait awhile for an MRI, especially if your doctor agrees.  Returning to work too soon can delay your recovery so don't push yourself.  You had major surgery.  That takes a real toll on your body and you probably don't have a lot of reserve stamina at this point.  I would try going part-time at first and see how you handle it.  If you do well, go back full-time.  If not, stay part-time for awhile until you can work more without fatigue.  You have to take care of yourself.

Its quite true that this forum is comprised of people that are AN patients or have a close connection to an AN patient, making it a rather 'select' group, as less than 3,000 AN cases are diagnosed each year - in a U.S. population of 3 million people.  Many folks use the forums to vent, usually with good reason.  Because of that, the impression one can get is that all AN patients have re-growths or other post-op complications.  That simply is not true - and statistics can prove it.  I had a large AN and had few post-op problems. I just wish that every AN patient could have the same experience.  Unfortunately, that isn't always the case.

Finally, I heartily agree with Boppie that, here, there are no 'crazy' questions. 

Jim

 

[BB]

THANK YOU ALL SO MUCH FOR ALL THE INFORMATION.  JUST WHEN I THINK I UNDERSTAND THE WHOLE THING, THEN I HAVE SOME WEIRD QUESTION COME UP THAT I DON'T HAVE THE ANSWER TO, AND THEN THE ONE YEAR MARK COMES, AND THEN THE STRESS OF THE WHOLE THING AGAIN.  BOPPIE I KNOW WE HAD THE SAME DOCTOR.  I GET MIXED SIGNALS FROM THE NURSE AS TO HOW LONG TO WAIT TO GET A NEW MRI,  AND THEN THEY SAID THERE WASN'T ANY NEED TO COME IN TO SEE THE DOCTOR WITHOUT A NEW MRI REPORT.  IT AMAZES ME THAT AFTER THE DOCTOR'S OFFICE  FINDS OUT YOU DO NOT HAVE INSURANCE HOW DIFFERENT YOU ARE TREATED.  I STILL LIKE AND RESPECT MY DOCTOR'S OPINION, BUT I GUESS THE BOTTOM LINE IS NO ONE KNOW'S FOR SURE IF THERE IS ANY PROBLEM WITH OUT THE NEW MRI.  SOME TIMES I FEEL LIKE I GET MIXED SIGNAL'S ON WHAT TO DO FROM THEM.  I HAVE CALLED AROUND TO GET NON INSURANCE PRICES, AND IT IS A LOT CHEAPER.  THANK YOU FOR REMINDING ME  HOW SLOW THESE THINGS GROW.  I WAS TOLD THEY GOT THE WHOLE THING AT SURGERY, BUT YOU ARE RIGHT JIM, AFTER READING ON THIS FORUM OF THE REOCCOURANCE'S, IT SOMETIMES MAKES YOU WORRY IT MIGHT BE BACK, BUT I KNOW IT IS A SLIM CHANCE. SORRY FOR ALL THE MISTAKES WRITTING BACK.  MY HUSBAND TOOK ME TO SPLASH TOWN WATER PARK THAT HAS A LAZY RIVER THAT PULLS YOU AROUND IN THE WATER.  I WASN'T SURE I COULD DO IT, BUT WE HAD FUN, JUST DIDN'T LAST VERY LONG IN THE WATER AND ALL THE EXERCISE I GOT IT WILL BE AN EARLY NIGHT FOR SURE.  I SHOULD HAVE WAITED TO WRITE BACK UNTIL TOMORROW.  I MIGHT BE A LITTLE OVER DONE TONIGHT.  AGAIN, THANK YOU ALL. BB

[Windsong]

BB, hope you don't mind but can you use small letters please? Caps are hard to focus on for long for some ...makes a difference... thanks....

W.

[BB]

Windsong, I will try.  I have trouble with the small letter's, but have been wanting to try again.  It's been a while.  I have so much trouble reading back small letters, but I make so many mistakes anyway.  I'll sure give it a try. BB

[kippy6]

My one-year MRI is also coming up soon. I was just wondering... do they typically do a MRI with and w/o contrast for people who are one-year post op? If I'm laying there on the table, and they start giving me the dye, I want to know if they are doing it because it is standard practice, or if it is because they see something "new" that needs to be identified.

Thanks.

[krbonner]

My one-year MRI is also coming up soon. I was just wondering... do they typically do a MRI with and w/o contrast for people who are one-year post op? If I'm laying there on the table, and they start giving me the dye, I want to know if they are doing it because it is standard practice, or if it is because they see something "new" that needs to be identified.

Thanks.

As far as I know, we will always get the dye injection partway through the MRI.  An MRI without any contrast dye just isn't reliable enough to pick up anything as far as ANs go.

Katie

[pearchica]

Hi BB: if it's any comfort, my brother only uses capital letters as he has a hard time reading small print..so for all of us, Font is INDIVIDUAL.   

(windsong, my brother's emails would drive you nuts! And weird thing, my dad had a special typing ball that was just capital fonts that I would have to insert into the old typing machine -so go figure, some people are just genetically pre disposed to caps )

Okay to the main issue at hand: in the very rare case that you do have some residual cells- you could always opt for radiation treatment if the darn thing did start growing again (very rare).

And yes, MRI is the only way they can determine if all is well.  However, if you are anxious, you should order your MRI early... if it gives you peace of mind.

Glad you had fun at the water park. Take care, Annie

[Windsong]

ah, geez... pearchica, I simply find caps hard to read....

i had to go back to the first post now to sort out what bb's question was and that was about if an An came back (regrew) did it grow in the same spot?.....

my answer would be I don't know unless you mean the general spot where your An was first found..... that they can grow again i do know, at the same time that is not a common thing given the stats however if one reads this site or others it can occur, yes....the fact that there is not that much out there about that is actually reassuring....

I haven't had an mri with contrast after my An treatment for my An but then i have mri's for things other than an An.... but also without contrast.... i would guess that when a doc is looking for an An regrowth they wouldn't miss it? (with or without)...

[BB]

Thanks, Annie.  I may have to go back to all caps, but I really want to try it this way.  Just takes so much more concentration, and I have so much trouble with sentence structure, and spelling.  Will it ever get better?  I just had to ask my husband how to spell sentence structure, still not sure it is right.  I may go ahead with the MRI.  I guess I'm being a baby about it, but with no insurance, I think I just don't want to know.  Is that crazy.  My sister is going to call and talk to me about it tomorrow.  She thinks I should go ahead with it, but without insurance, what would my options be.  I know wait and watch, but then what.  I'm just starting to have longer good day's, just don't want that to go away, if you know what I mean.  Thank you for your thoughts.  The water park is a very good work out.  Can't do too much yet, but it is very good feeling in that lazy river.  We did have fun. Thanks again. BB

[Battyp]

BB there is a way for you to increase your type size for reading.  Only I can't remember how.  Capt Deb knows...Oh Captn where are ye?

BB in FL there is a state medical program based on income. It is called share of cost. I do not know if it is just a state thing or a federal thing. It is through medicaid. Basically twice a year I meet my share of cost due to my mri costs. They will pay my mri bill and any other doctor, medicines needed that month as the bill is over a certain limit from my income.  Those without insurance might want to check into this.  I have no insurance either.  I just had my 18 month follow up and will not have a bill.  I was also told that my surgeon would write off my mri and after talking to billing for the hospital there is a process to it but the doctor has to be willing to sign the paper. One of the reasons I go to a university hospital. Hope that makes sense.

Michelle

[BB]

Thanks for the info michelle.  I will check into that. I live in Texas.  I know I need to get it done, but I just keep putting it off.  A friend found an open mri with/without contrast and it is only $470.00.  They say that is reading the results and the report.  OK I DO NEED CAPTAIN DEB.  THESE LETTER'S ARE JUST TOO SMALL TO READ.  I HAVE HEARD THAT THE OPEN MRI ISN'T AS GOOD AS THE OTHER, BUT THE DOCTOR'S OFFICE SAID THEY WOULD TAKE WHAT THEY CAN GET.  THEY WAS SURPRISED ABOUT THE PRICE OF THE MRI.  SOUNDED TOO CHEEP TO THEM.  SORRY IF YOU ARE HAVING TROUBLE READING THIS.  I SHOULD BE OFF TO BED.  IT'S BEEN A REALLY LONG DAY TODAY. I GUESS I NEED TO SPEND SOME TIME ON THE PHONE TO FIND OUT MORE INFORMATION WITH HELP.  ISN'T IT THE HARDEST THING NOT HAVING INSURANCE.  SO SCAREY.  THANK YOU AGAIN.  BB