Yearly MRI's and Do you really want to know?

[Pembo]

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

[Battyp]

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?   

[Raydean]

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


 

[ppearl214]

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

[Battyp]

Wow raydean you mean I don't need mri's every year if the second year one is clean?  Something to look forward to!

[matti]

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

[Raydean]

 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.  

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

 Ã‚ 

[cookiesecond]

Raydean,
What were Chet's symptoms  that prompted you to ask for the first MRI?
Thanks,
Lynn

[Battyp]

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.

[Raydean]

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

[Larry]

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

[Peanut]

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

[Raydean]

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

[Desilu]

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

[Static]

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.