When did you have your first post MRI??

[epodjn]

I am coming up on my first year at a postie and wondering if I need to have an MRI? Is that standard protocol? I have pretty much given up hope on my surgeons. I was told by one, you don't need an MRI because I took it out, it's not there, what do you think you will get a picture of? I was told after surgery that the tumor was completely removed but how do I know that? Could I have regrowth even if it was totally removed?
I am thinking of asking my original ENT that diagosed the AN to do my follow up care. If not him maybe just another neurologist. Opinions please!!
The Other Julie

[Jim Scott]

(the other) Julie ~

Every doctor has their own time-frame for post-op MRI scans.  Their purpose is to monitor the area to catch any possible re-growth, which is unlikely to happen - but can occur.  If even one cell of the tumor remains intact, the AN can re-grow.  Annual scans are typical, at least for a few years post-op.  My very conservative neurosurgeon had me on semi-annual MRI scans for two years post-op, then allowed me to go to annual, since all appears to be well.  I would consider calling your doctor and asking about his/her advice on MRI scans (a doctor has to order one).  I believe that even bi-annual MRI scans are prudent and can 'catch' any re-growth, but if your doctor doesn't agree, you may have to forgo the procedure.

Jim

[epodjn]

My surgeon is basicly the only game in town, the only guy doing these AN surgeries. I think he did a great job, no complaints at all on the surgery, but he seems very unconcerned about any follow-up care. I know a doctor needs to order the MRI and that is why I am considering just going back to my original ENT. He is very conservative and I think he would agree to order it. I have heard from some other patients in the area that this doctor usually doesn't do a follow-up MRi until 5 years out. That makes me nervous. Do you think I should just find someone else (ENT) to order it?
The Other Julie

[Cheryl R]

Julie,    I would ask your ENT for the MRI.    The odds are you won't have a regrowth but this will give a baseline and if by rarity have future symptoms, you will have something to see to show what it is looking like now.                          I am not your typical ANer as my MRI 2 years later showed the start of my tumor on the other side which has made me go on to be NF2.    Don't be scared by this as only 5% of ANs are NF2.              I am just glad my neurotologist does keep good watch post op.           Plus you will have more peace of mind.                My family dr was the one who orderd my very first MRI as the ENT I had seen a while before said I just get anxious when asked if my hearing loss  and other symptoms might be a tumor.         
                                                        Cheryl R

[Jim Scott]

My surgeon is basicly the only game in town, the only guy doing these AN surgeries. I think he did a great job, no complaints at all on the surgery, but he seems very unconcerned about any follow-up care. I know a doctor needs to order the MRI and that is why I am considering just going back to my original ENT. He is very conservative and I think he would agree to order it. I have heard from some other patients in the area that this doctor usually doesn't do a follow-up MRi until 5 years out. That makes me nervous. Do you think I should just find someone else (ENT) to order it?

Yes.  Your peace of mind is worth it. 

Jim

[epodjn]

Thanks guys. You make me feel like I'm not paranoid, which I'm usually not. I feel great and I am sympton free. Like you said Cheryl, I just want a baseline for future reference. I'm really not expecting anything.

[epc1970]

Hi Cheryl
I had a MRI at 3 months post op as my baseline and am currently ,at 16 months post,  op having scans once a year. I think at some point that time period  between scans will be streched out to longer time frames but for right noe I ma having then once a year.
Erin

[CHD63]

Julie .....

Although my neurosurgeon assured me he had completely removed my tumor, he initially wanted an MRI at 3 months out.  However, my insurance would only pay for an MRI every six months (unless new issues were uncovered).  So, I had an MRI at 6 months out and then at 12 months.  He is now comfortable waiting a year in between so I will have another one next February, 2010.  No end date for having MRIs has ever been discussed.  It all depends upon the results of each.

I, for one, would have been very uncomfortable if my doctor had said I did not need any more MRIs post-surgery.  As others have said, regrowth is rare but it can happen.  Better to know than to miss that rare occurrence.

Clarice 

[lori67]

I had an MRI at one year post op and I'll go for my next one when I hit the 5 year mark.  Then as long as everything continues to look good, I was told to go every 5 years.

I think I would have requested one at my one year point even if my doctor didn't usually do them.  I think it would make me feel better to know that everything was okay in there.

Lori

[JerseyGirl2]

I had an MRI one year after my surgery, and my doctor (Dr. House at House Ear) said I could wait five years until my next one. I know that a lot of patients feel more comfortable having them on an annual basis, at least for the first few years, but I have no problem whatsoever following my doctor's advice and waiting.

Catherine (JerseyGirl 2)

[leapyrtwins]

Julie -

as others have pointed out, different docs have different ideas on post op MRIs.

Mine goes with the annual MRI for a number of years (I don't recall how many) - but I've already had two - and then if they are clean I think he lets you wait for 5 years for the next one.

IMO you should ask your ENT to order one for you.  Although docs say they removed the entire tumor (mine said this and I'm confident they believe they did) they can't guarantee you anything 100%.  From what I've been told, even one cell left behind has the potential of growing.  The odds are very small - only a 1-2% chance - but regrowth does happen.

I'll chime in with the rest of the group - I want to know what's going on inside my head and I just feel better having some validation that nothing that doesn't belong there is present 

Jan

[Nani]

I had an MRI 2 days post-op (or was it 3?) and have had one every 3 fun months thus far.

[nteeman]

I had an MRI 3 months after my surgery (all clear) and will be doing another a year from that date. Initially my surgeon said we would do one at 3 months then every year for 3 years. At that point if all is clear I wont need anymore.  That is the plan so far.

Neal

[Sam Rush]

At House clinic, if they think they got all the tumor out surgically, then you get a MRI at one year, and again at 5 years.

[amymeri]

My tumor was completely removed.  I had a MRI at diagnosis, one 4 months after my surgery and then annually for the past three years.  My surgeon wanted to do an MRI annually for at least 5 years, and then would leave it up to me if I wanted to continue annually (his preference) or go to every other year.