Author Topic: Frequency of scans post op  (Read 3582 times)

SKT

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Frequency of scans post op
« on: January 11, 2006, 07:46:17 am »
Hi, I'm 2 years post op.  3.3cm AN, completely removed by translab approach.  I had 2 follow up MRI's in the first year, and one in the second year.  All 3 showed no signs of recurrence.  I will be scanning every 12 months indefinitely.  I am curious as to how often other AN suffererers scan after surgical removal.


RadiantStar

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Re: Frequency of scans post op
« Reply #1 on: January 11, 2006, 09:25:03 am »
Yesterday, my doctor told me that he wanted to do the MRIs for up to 5 years.  Seems like a long time, but worth it I think.  I'm at six weeks post-op and will have the first one done at the 3 month point, I think it's once a year after the first year. 


DeniseSmith

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Re: Frequency of scans post op
« Reply #2 on: January 11, 2006, 09:31:57 am »
I have one scheduled for my 1 year anniversary of my surgery.  My dr. has not discussed with me the need for ongoing MRI's.

littlemissrory

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Re: Frequency of scans post op
« Reply #3 on: January 11, 2006, 10:32:04 am »
My surgeon said that I would have MRI's at the 6-month and then at the 3-year mark.  He said that the majority of regrowths occur by the 3-year MRI, and since these tumors are slow growing there was time.  After that, I think he said one at the 7th-year and that is it.

As it turned out I had one about 2-weeks post surgery due to migrains (they are gone now), then around the 6-month mark and then one at the 1.5-year mark due to sudden on-set of dizziness again.  Due to some scar tissue they can't see a small tumor if there is one...that is why they will  do another at the 3-year time.  My surgeon is spectacular, I'll follow his recommendations.  I have also noticed the MRI's are getting cheaper (even at the same mm and with the same contrast dye), I wonder if I'm getting frequent flyer discounts with them..LOL

Kathleen_Mc

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Re: Frequency of scans post op
« Reply #4 on: January 11, 2006, 10:36:53 am »
I was orginally only followed on the long term by my G.P. and only had infrequent CAT scans until about 7 years post op, then I had MRI for an unrelated reason and this was when the regrowth was seen, I have had yearly MRI's since then. Now that the regrowth has been removed I wasn't given any direction of follow up MRI's but I don't want to have another, I don't want to know if it's there if I haven't any symptoms, I found it very stressful being "monitored" for the regorwth for 5 years and it was only for my peace of mind that the regrowth had to be removed at this time. Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

stein78

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Re: Frequency of scans post op
« Reply #5 on: January 11, 2006, 12:15:39 pm »
Going for my first post-op MRI at my one year anniversary in May.  Not sure on the frequency after that.
29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

becknell

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Re: Frequency of scans post op
« Reply #6 on: January 11, 2006, 02:57:18 pm »
My husband's doctor told him he wanted to do 6-month and 12-month MRI scans, but he had some tumor residue left after the surgery in August. If no growth seen at the 12-month mark, he said he would recommend yearly MRIs after that. We did not discuss how many years we would continue the yearly MRIs, but I got the impression that it would be indefinately, for a long period.

matti

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Re: Frequency of scans post op
« Reply #7 on: January 11, 2006, 03:10:39 pm »
I had 2 scans my first year and then one the second year and have had one every other year and I am 7 1/2 years post op. I think my doctor intends to stop at the 10 year mark. I had my surgery at Stanford and was told that I was a case study and I think that is why I am having them until the 10 year mark, normally they stop at 5 years.

matti
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Larry

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Re: Frequency of scans post op
« Reply #8 on: January 11, 2006, 04:28:49 pm »
I had the middle fossa approach which, from my readings, seem to have a bigger occurrence of regrowth than translab. I had annual MRI's for two years post op since my op 3 and a bit years ago and then about 7-8 mths ago, felt like something was not right. So I organised for an MRI and yep, it had returned. I had another one 2 months ago and it had not grown any more.

What I have found through experience of various health issues, not just this, is that you need to research yourself and get second opinions, regardless of how wonderful you think your Dr is.

I made a huge mistake when I had my op done. I was very ignorant of options and went into it on the recomendation of my ENT and have sufferred significantly since (headaches mainly). It is only through this message board that I have learned about the other options available, the drugs and ongoing therapy that people are adopting. It has been fantastic. The posts thus far about MRI's seem to be a little inconclusive as to how long to have them. I'm fortunate, in Sydney my out of pocket expense for an MRI is about $200. Thats pretty good peace of mind for me.

Just on MRI's, another thing that I learned, and this may explain why some posters have growths that are bigger than their MRI's show at time of op, is that not all MRI's have the same strength. It pays to check out the comparitives between hospitals as to their strength and age. The machines are getting better and the software is improving to reduce the length of time in that horrible chamber. My last MRI took about 15 minutes compared to my first one 3 years ago which was 40 minutes.

Personally, i will be having annual MRI's till at least the 10 year mark.


Larry
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Pembo

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Re: Frequency of scans post op
« Reply #9 on: January 11, 2006, 04:42:32 pm »
I had one 24 hours post op, then not again until my one year anniversary. There was no sign of anything but the dr did say I would have them yearly for 5 years.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

jcinma

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Re: Frequency of scans post op
« Reply #10 on: January 11, 2006, 04:59:07 pm »
I had retrosigmoid surgery for a 1 cm. AN back in 1996. Back then I was told to do MRIs at the 1 year mark and another in 5 years. Had an MRI 1 1/2 yrs. later and it was clear.  In 2004 an MRI showed a 3.2 cm. reccurrence.  Had retrosigmoid surgery (again) in Feb. 2005 to debulk and followed up with FSR April 2005 for the residual tumor. Just had an MRI in Dec. 2005 and the tumor has not changed. I have been advised to do annual MRIs for at quite a while. To all, whether you have chosen surgery or radiation, please be vigilant and have annual MRIs. If by some real slim chance there is a reccurrence it can be caught early.
Jane 
1cm AN removed (lost hearing) 11/96
3cm reccurrence debulked to preserve facial function 2/05
FSR 4/05
Mass General Hosp. Boston MA

debora

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Re: Frequency of scans post op
« Reply #11 on: January 11, 2006, 06:37:02 pm »
I was told to have an MRI ever year for the first 5 years, and then everyother year until 10 years.  I can't remember after that how many years inbetween scans but the Doctors at the Mayo told me that monitoring this tumor will be for the rest of my life.   I had radiation which doesn't remove the tumor, maybe that is why.

luv2teachsped

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Re: Frequency of scans post op
« Reply #12 on: January 11, 2006, 08:26:34 pm »
Hi everyone:
     I had 2.5cm tumor removed trans lab on May 18, 2005. My dr. says about the same as everyone else.  A MRI every year for five years, plus vestibular and hearing test at 5 year mark. If everythings ok, I'm done! luv2teachsped
3cmx3cm/translab 5/05
University of Michigan
Dr.Telian and Dr.Thompson

BAHA implant-4/07, processor on 8/07