ANA Discussion Forum
Archive => Archives => Topic started by: Pembo on April 26, 2006, 01:41:43 pm
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My doc did an MRI last year at my 1 yr post op. He wants to keep them doing yearly "for awhile" he said. He has assured multiple times that he got it all but of course there is always the chance he left a cell behind.
I am facing a 2 yr po MRI and I'm not sure I want to do that. I feel great. If I found out that the AN was back I'd be a mess. The mere thought of surgery again is beyond scary. I'm still regaining facial function so gammaknife is out and if I had to "watch and wait" I'd need a lot of psychaitric help. (That's only kind of a joke).
So here's my dilemma....get the MRI, make the doc happy OR continue my life as it is with no MRI.
If the An did come back, would I have symptoms again? They estimate that mine had been growing 10-15 years and I didn't really have any symptoms except for some minor things in the last 5 years and then dizziness in the last 3 months before surgery.
If I started having any kind of symptoms I'd be the first one in line for the MRI.
Any opinions, thoughts?
Barb
4 cm AN
Cleveland, OH
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Oh Barb tough one! My thought it if you're doing well, showing no symptoms then why bother. I guess you need to ask yourself..".if I went for the mri and it shows a residual tumor what would I opt for" and if that answer is no further treatment then I'd say why bother. But if you're doubtful what to do then I'd say do it to give yourself the best possible position for further treatment instead of waiting for it to grow. I know for me by the time symptoms starting showing I was a goner in the sense that I had literally weeks to research and made a decision and I had lost so much by then (my hearing and balance and probably a lot of my sanity lol) Boy I sound wishy washy dont' I? Part of my PO problem is inability to make a decision can you tell? ;D
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Chet did the 1 year post op, then 3 year post op MRI. We were told we could wait 3 to 5 years for the next one and well, 5 years is now upon us and we're in the same boat as you.  We decided to do nothing, based on the previous 2 good MRI's and his age (upper 50's). Having said that I personally believe that a post one year and 2 MRI is very important. It can be used as a baseline later for comparison. Scarring and other things will show up bright like a tumor with enhancement. Sometimes it's hard to tell for sure which is which. By having a post year 1 and 2 MRI should you develope symptoms in the future the comparison will be easier to tell what's going on.
Best to you
Raydean
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Barb, I have to concur with Raydean. Better to make sure that all is looking good and play it safe. Funny, the docs that I deal with reminded me that MRI's are going to be commonplace for me now.. and heck, if it helps to keep me healthy, I'm for it! :)
My vote: go for it! :)
Hang in there!
Phyl
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Wow raydean you mean I don't need mri's every year if the second year one is clean? Something to look forward to!
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I am 8 years post op and have had 5 MRI's in that time period. I am fearful each and every time I go, but then have a huge sense of relief and peace of mind that all is still well and if it wasn't then I would be able to deal with it early in the diagnosis.
I understand your feelings, but I vote in favor of having the MRI.
take care
matti
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Hi BattyPrincess
I think that it's a personal decision.  Chet has had three MRI's post surgery.  The first was 3 months post emergency surgery done at my request based on my feeling that there was residual tumor remaining.  He was experiencing a very slow recovery.  Looking back  Chet has stated it's his opinion that the residual tumor was either large enough, or the location of it was causing him to remain symptomatic.
Batty,  I'm not a doctor, but i had a very strong feeling that there was tumor remaining. Strong enough that I felt I had to act. For two months every appointment either began or ending with my asking.  "Are you sure you got the whole tumor out?  Could he be bilateral? I had to push for the MRI and was at first refused.  When I asked for his reasons for refusing in writing he agreed to order a MRI.  As they say the rest is history.
Chet's care was transferred shortly after the MRI was done.  He had removal of the residual tumor and the 2 MRI's since were clean. I went over them extensively with his doctor.  Chet is near 59, has other health issues that is a greater concern then the possibility of tumor regrowth.  Truthfully, if a regrowth should occur he would remain a W and W for as long as possible.  If he showed any symptoms that would indicate possible tumor regrowth or shunt disfunction I'd have him in for a MRI
in a New York City  second.
If Chet was younger, then we would probably take a different route, much more conservative with more MRI's follow up. ÂÂ
To those reading this, please understand that I am  not advocating or recommending stopping at 2 MRI's post surgery.  Please follow the advice of your treating Doctor.  Please accept my sincere apologies if I gave that impression.
Have a grest day
Raydean
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Raydean,
What were Chet's symptoms that prompted you to ask for the first MRI?
Thanks,
Lynn
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I've been told to have them once a year for life at this point. I'm not at my year mark yet so don't know if that will change or not. I've been told the tumor is gone and my post surgical mri at 4 mos back up that statement. I have another one scheduled for june. I'm just wondering if all the mri's since surgery are clean why get one every year? Maybe every other? Since this is suppose to be slow going and I don't know at this point I'd do anything further for treatment except maybe gamma or cyber. I can't fathom having a second surgery for this...my hats off to those who have had to go through that. I'm sure facing symptoms vs getting better my thought process might be different. You know that no chemo for me but...I've not been faced with that decision so don't know what I'd do.
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Hi Lynn,
It's hard to discribe, but we refer to those months as the "zombie" time period. Balance was worse then before, nothing was improving. It was more then healing from 2 surgeries. It was the knowledge that something wasn't right. As I said in the earlier posting it was intuition on my part. I know it doesn't make much sense. I just knew it was there.
Chet had a much better recovery from the residual tumor surgery. A world of difference. Chet truly believes that either enough of the tumor remained, or due to the location it was causing him to remain symptomatic at that time.
Battyprincess
The Doctor we transferred his care to did the first at 1 year post op, the second at 3 years post op and after looking at the films said we could rechedule another in 3 to 5 years. It probably differs from Doctor to Doctor and maybe on how the films look.
Best to all
Raydean
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I am an annual MRI person. Yeah, pretty scary stuff but better to be safe than sorry. Mine grew back after 3 years post op so know about it early. Just gives me more options to deal with it rather than when adverse symptoms arise which may limit the treatment options.
Laz
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My answer is an emphatic YES. If I had known sooner, perhaps my AN would not have grown to 3.5 cm and I would have had an easier time. Knowing that these schwannomas can grow back even when we are told "we got it all" through total resection, I agree that one has more options through knowing sooner. An MRI is less costly in time, money, and wear and tear than surgery and recovery. This from one who used to think those fancy tests were overkill just to make money for the companies. I've changed my tune. Those diagnostic tests can be useful tools. I had one this year too, mostly to check the extra axial fluid sac and its progress in reabsorbing, as I am still suffering from post operative headaches.
Peanut
3.5 cm AN removed via retrosigmoid April 2003
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Hi Peanut.
Wow, that's a hugh regrowth. I hope you don't mind me asking but how long did it take to reach that size and how much did the Doctor's leave in? Did they tell you there might be residual tumor?
Or did they tell you they had gotten it all? When did they discover they regrowth?
Chet's residual tumor surgery the report came back "viable and untouched" Meaning alive and growing, and untouch, the first medical team didn't go far enough.
Thinking of you and hoping the headaches get better.
Raydean
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Hi Barb,
Everyone is different and you have to do what you feel will give you the most peace of mind. I would rather know than not, but that is me. I believe I was told to get an MRI every year for the next 5 years. I will go for my one year MRI in June. Search your heart and say a prayer to help you in your decision. I wish you the best. Ann
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It's so weird that I logged on and found this topic just getting ready to call my doc's office for a note for an MRI since I can't find the one he gave me a year ago.  I was having mri's every 6 mos after surgery ()did that twice) and since they were clean (according to him the tumor that was left was scar tissue) I'm now switched to one a year.  It's been almost a year now so time for another.  I hate the thought of listening to that damn thing, it makes my tinnitus worse than it already is for a day or so.  I guess it's worth it for peace of mind but then again, what would I do if I knew something was there again.  I'm just starting to get things  back together again  :-\  I'm awful at making decisions.
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My doc, Dr. Friedman at House told me to have another one at 5 years post-op. I had one at 11 months looking for a phantom CFI leak to explain the horrendous headaches I was having. I emailed him last month to find out when I should have the next one. Right after surgery, he had said 3 years. I mailed him the 11 month one. That seems to be a long time, to me.
Capt Deb 8)
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I'm gonna go every year because I dont want an AN on the other side! .. with the BAHA my hearing is not so bad, but if I was forced to get a trans-lab on the other side , I would be screwed >:(
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Barb: I did not have a post-op MRI until around 7 years post-op (the doctors following me weren't neurosurgoens and thought CAT scans were enough....long story) I was told that one showed "scar tissue" by my neurologist and it was actually done for another reason, she wanted me to have one the next year and after that one she said "scar tissue" but sent me on to see the neurosurgeon....turns out she lied on both counts it was clearly stated in the reports it was tumor regrowth and it continued to grow between the two MRI's....this put me in the "wait and see" mode for almost 6 years and that was emotionally draining and it was only because of my psychological need to have surgery that it was done last fall and now I have vowed never to have another MRI again, if it grows back I don't wanna know.
Now that could change because before my son was born I said I would never have surgery agin if it grew back and I changed that decision and I remain angry at the doctor who lied to me when the regrowth was found, had she told me the truth I would have had surgery before having my children and it was bases on her saying all was well that I went ahead and had my son.
What my point is Barb is I can see not wanting to know if there is a regrowth and never wanting to have another MRI, you can always change your mind at anytime and have one but once you've had it and found out there is a regorwth you can't change that!
Kathleen
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I'm gonna go every year because I dont want an AN on the other side!
I'm with you! I'm only 28 so I got a long life ahead of me. Even though my doctor said not to worry about getting an AN on my good side, I still worry about it. If you are going to have bilateral ANs (NF2?), do they happen at the same time? I have no clue.
I'm all for getting the MRIs, I like to have piece of mind knowing that all is good. If I was to have a problem, the sooner I find out about it the better.
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while I was at "House" a got to talking to a Man and his Wife (They dont have a computer!, so they are not on here!), they very nice, at any rate, He was very deaf, because he was there for his AN other the other side .. and his first AN was 10 years ago!
so no .. they dont happen at the same time .. >:(
So if my insurance will let me , I'l like to have one every year for 5 years, then go every other year for 5 or 6 years, then every 5 years until 80 .. if I get that far ;)
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so no .. they dont happen at the same time .. >:(
CRAPOLA!  >:( I meet with my doc next Friday for my one year check-up. I'm going to get his thoughts on it.
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For those who have had regrowth, do you have symptoms or was it just picked up on the MRI?  My main symptom was balance trouble and without the nerve I know that can't happen.
I think maybe waiting a few years would be a better idea. ÂÂ
Decisions are definitely harder for me since surgery..........
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Kathleen Mc
Sorry you had to go thru all that and thanks for sharing. The lesson in it is for all of us to get and save copies of all medical and lab reports, copies of all our MRI's, CAT's and learn to read them ourselves. Thank God for the internet where we can look up medical terminology. How do folks not "online" ever become pro-active about their own healthcare? I can't imagine.
Captain Deb
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I definitely know how you feel…kind of feels like we live our lives “around the next MRI� I find myself making life decisions based around the MRI’s   IE: to take (or not take) a job that requires moving, to buy a new car (HHmmm may not be employed…better re-think this), etc…  Kind of a drag. Anyone else feel this way?
But…I’d say to go for the MRI…it’s better to know and be informed (and to make decisions), then top wait until there is a problem and you’re wheeled off into the O/R. Knowledge is power, and the more we know about this enemy and it’s location…the better we’ll be able to defeat it. Personally I look at it like a military assault. The MRI’s are intel  :)
Gary
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Interesting thread.
I would say that if you can handle the emotion of knowingh whether regrowth has occurred then have annual MRI's. If you can't handle the emotion and don;t want to know then don't have them.
This also depends on whether you have any symptoms or not and that depends on where the wretched thing grows. I'd say its a personal thing
As only MRI's show AN's, those quacks that only did cat scans should be shot Kathleen thats why stats etc for AN's has really only been useful from MRI inception - about 20 years ago'ish.
Larry
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Stein: No the tumors associated with NFII do not always grow at the same time, in fact it can be a number of years inbetween the appearance of tumors. That is not to say that they can't.
Pembo: I did not have symptoms of the regrowth, or so I am told. All the associated nerves were removed the first time around and the tumor was confined to the auditory canal, the nerves were not there. If the tumor had been left to grow big enough to come out into the "brain cavity" I would have possibly developed symptoms....but I got it out before that could happen.
Larry: To state the AN's cannot be seen on CAT scans is wrong, in fact my orginal tumor was seen plain as day on a CAT scan and I was very quickly ushered into the waiting room of MRI (that wasn't supposed to be done for another week) and the MRI done to ensure my safety to go home (that sucker was BIG!, the tumor was displacing the opposite posterior lobe, within MM of the brain stem and basically taking up all the "space" availble in there.). Now the average AN cannot be seen on CAT scans and certainly those confined to the auditory canal would not be seen (at least I don't think) and certainly MRI's are the gold standard for follow up on treated AN's.
My unfortunate circumstances of follow up are unusual for the AN patient, I believe most doctor's are aware for the need for MRI's as follow up.... I am no longer under the care of these doctor's and haven't been for some years. I have now been seen by 4 different neurologists in my life time and the only one who is worth anything was the one who found my tumor orginally but that was just his luck, he thought I had MS and put me in an MS study to get the testing done faster.....boy was he shocked when he got the call! I didn't continue to see me for a few reasons but one of them was that he lacked knowledge of how to handle my follow up.
Kathleen
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Hay you go for it girl what is one more MRI if it saves your life.. ;D
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hi -
i had a 4.5 cm. an removed two years ago. recently (two months ago), i started to experience symptoms silimar to those that i had before i was initially diagnosed.
i took charge and called my doctor to schedule an mri (i had it yesterday). i wouldn't do anything to "make the doctor happy" - they have their own families and friends to worry about anyway. my thought is that it's your life - the only person who is going to take of yourself (and make sure you are in the best hands possible) is you.
there are no dangers/side-effects of the mri procedure (unless you have extreme claustraphobia issues), so i say go for it.
regardless of the findings, at least you won't be living with your head in the sand.
best of luck to you.
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Keeping fingers crossed for you Julieteresa..hoping your mri shows nothing remarkable!
keep us posted on how you are!
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This thread really piqued my interest. I have NF2 and have had one AN removed in two surgeries, first retrosigmoid, and then translab 2 years later. I have scans every 6 months to monitor the other AN. It is now 3.5 cm and stable for the past year. I have grown accustomed to the pre MRI stress every 6 months, but I absolutely hate it. Therer are times when I want to go ahead and have surgery so I don't have it hanging over my head so to speak. It is stressful, but I much prefer frequent MRI scans to an unmonitored tumor that had a growth spurt while I wasn't watching.
Jeff :)