Author Topic: Hate to be back.  (Read 1042 times)

robynabc

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Hate to be back.
« on: September 26, 2017, 02:31:01 pm »
Hi,

Well,  my son who had a very good outcome considering his enormous tumor at 18 and just had his ten year anniversary. He has been having MRI's every year at first and now every 3 years.  Last one was 4 years because he had braces.   

They have been telling him for 9 years that his MRI shows either scar tissue or piece of the tumor is still there.  They keep checking for growth to decide which it is.  The good news is that they have a much better MRI machine now.  The bad news is that it is not a scar it is a tumor that was left.  They think it has grown 1mm in 10 years. I am not even sure they are sure because the previous mri is so much more murky.   

 The doctors had two different reactions.  He has two of them.  One said that they had a new GK procedure they would use if it does grow more and the other said due to his age he does not feel comfortable with the radiation in such a young person and would want to surgically take it out. We were  a bit  devastated to even think about brain surgery again.  The worst time of all our lives.  We always believed that he would have GK if there were ever an issue again.  They also don't feel the need to see him again for 3 years. 

If anyone has any opinions it would be greatly appreciated.
« Last Edit: September 26, 2017, 02:36:24 pm by robynabc »
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.

v357139

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Re: Hate to be back.
« Reply #1 on: September 26, 2017, 07:38:25 pm »
Robyn,
Sorry for your news.  Did you say 1mm in 10 years?  That is very slow growth.    So I know it's a real downer to find there is tumor left.  But 1mm in 10 years is really slow growth, almost no growth.  So perhaps it will not grow any more.  The fact that they don't want to see him for 3 years means they are not that concerned.  You will have time to weigh this.  You certainly do not need to decide between GK and surgery for quite a while.  In this case you might also consider wait and watch, which you will be doing for the next 3 years anyway.

My advice is to take some time and consider the positives.  Very slow growth, and nothing needs to be done right away.  After some time passes, you can start to slowly weigh the pros and cons.  You will definitely find different doctors have different opinions.

Keep in touch,
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

robynabc

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Re: Hate to be back.
« Reply #2 on: September 26, 2017, 08:18:16 pm »
Hi Rich,

I am still processing all this and have some more questions for the doctor.  My ex and I are still pretty traumatized by the first surgery not to mention my son.  I am sure you understand that.    My son still has coughing problems and a paralyzed vocal cord.  This is a definite issue for him but I never imagined that there was the slightest possibility that he would have another brain surgery.  (Keep in mind his was very big and pushing on his brain stem, he had to have surgery really fast). 

Yes,  I realize that the fact that they believe we don't have to come back for 3 years is good.  The one doctor (I love him dearly,  he saved my son's life and facial nerve)  but his bedside manner is terrifying and he always goes to worst case.  Once again,  he is a very gifted surgeon it just threw us.  I never thought there was any chance of a surgery.   My son still has a bit of high blood pressure from the first one and I worry about the effect of a second one.  The fact that he is so young has always been a worry because these treatments can manifest into other conditions over 40 to 50 years compared to 20 years for someone older.    I would like to prevent it from growing and saw some of this aspirin therapy.  Would be interested in any info on that.

I really appreciate your comment and support.  I hope it does not grow.  I think the 1mm was in the last 4 years.  And the size is 7mm x  3mm I just hope he can go the rest of his life with no growth.
« Last Edit: September 26, 2017, 08:20:18 pm by robynabc »
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.

ANSydney

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Re: Hate to be back.
« Reply #3 on: September 27, 2017, 09:40:02 pm »
Hi robyn,

Sorry to hear about the rough ride for your son and at such an early age.

With a current size of 0.7 x 0.3 cm at age 28, even if growth continued at 1 mm every 10 years, at age 100 he would have a ... 1.7 x 1.3 cm tumor. This is still considered small and not likely to introduce more problems than surgery.

As v357139 has said, what has been reported is very slow growth.

The fact that your doctor has recommended the next MRI in 3 years is a good sign.

Why not use those 3 years to increase your knowledge (there are great studies referenced in this forum and www.pubmed.com is great) and get a good growth profile with time. If after 1.5 years you get another MRI and then the one at 3 years, you'll not only know it's growth rate, but how it varies with time. Yearly would be even better.



robynabc

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Re: Hate to be back.
« Reply #4 on: September 28, 2017, 04:58:21 pm »
Thank you so much for your insight.  We need to process this then go from there.  Information is power and after I get some questions answered I believe that will help.  :) 

Robyn
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.

v357139

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Re: Hate to be back.
« Reply #5 on: October 07, 2017, 07:19:13 pm »
Robyn - Focus on what you can control.  You can educate yourself on the various options.  This will put you in the driver's seat.  Let us know if there is any specific information you have trouble finding.  I am willing to share anything I have.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

 


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