Eric's Followup MRI If interested

[robynabc]

HI,

Eric went in for his follow up MRI on Thursday.  They said it looked good but are watching a little "thing" that they said looks like scar tissue.  It has been there since the surgery MRI and hasnt changed but they said they'll have to "watch" it.  I hope it is just scar tissue.   THe rest of everything was fantastic.  Of course we are to wait and see what happens with the throat nerve issue.  We didn't see the ENT so not much to know about that nerve except that the vocal cord is still not moving.  They told him again that Eric is thier "star" patient.   The number of surgeries they have been doing has gone through the roof.  Maybe because they are posted on this site.  But they said that Eric has done the best of them all and Dr.  Lillehei said that his case is the kind that end up in medical books.  He said that Eric's is what clinical Case studies are made of.  So,  we are grateful.  Even with the other problem.  Eric was in great shape just a couple of weeks after the surgery.  We know it should (not a good word, lets say could ) have taken months.  Some things never went away, like balance it got better than before the surgery almost immediately. And his face was perfect.

Just for those who want to know what we did.

We researched and listened to our intuition.  Found the best docs out there. We would not settle for anything less. I called all ENT surgeons in Colorado and asked them who they would go to.  Picking the right doctors and making a decision like that was really the hardest part.  There is so much info out there and trying to feel that you are making the best decision was really hard.  ( read my posts from that time}
Then after we made the decision, we did not read any horror stories. Don't freak yourself out.
We (I) looked up every single "good" outcome  of large tumors and focused only on those. Stayed away from any negativity.   And Eric really is the type of guy to not worry too much. ( I have to say the day before the surgery was the toughest.  Even worse than the day of)  We also didn't tell the school too much.  We didn't want others feeling sorry for him because of the negative energy surrounding some others who we hardly know who use us to feel better about themselves and making Eric a poster child.  IT makes you feel like it really is bad.  I don't know if that makes sense.
We did Reiki twice a week.
We asked everyone we knew that went to church to ask the whole church to pray for Eric. Any denomination. And the Reiki guy put him on a Reiki master site with Reiki people praying for him.
And we stayed as positive as possible and would not even consider that it would turn out badly.
A little feng Shui helped too. Along with all the great people on this site.


It worked for us.  Was it luck?  I don't know but I tend to believe it was a measure of both luck and doing the right things.  Eric really thought the Reiki helped alot.  He also had Reiki after the surgery.  Our Reiki guy also said when he had a stroke all his Reiki friends were at the hospital doing Reiki and he recovered faster than they thought too. 


Peace and Love. 

You guys really are strong people and I really am in awe of you all for going through this and getting to the other side.  I really believe there are no accidents.  There is a reason for everything and you know what? Just think,  if you hadn't had this happen,  we wouldn't have gotten to know each other. 

P.S.  One other bit of information from our Surgeon that I asked about, and this is good information.  When we talked to house they were adamant about doing Translab on Eric. Dr Brackman went so far as to say he didn't agree with our surgeon for using retro.  I asked the doc what the difference was and he said that they are both okay it depends on the surgeons preference.  I think Dr. Brackman believes it is easier to save the facial nerve with the T/L.  When I asked Lilliehei he said retro was his preference and retro has less chance of CFS leaks.  I had heard you could have more headache problems with that method and he didn't think that was true.  But when I heard less CFS leaks with that method I was sold on it.  I also think that it is better to save the bones of the hearing canal even if they will most likely lose hearing.  Just my opinion,  I am not a DR.   It might be something to ask the doc about when making a decision.

[HeadCase2]

robynabc,
  Glad to hear that Eric is doing well.  My last MRI also mentioned a spot that is probably scar tissue, so that may not be unusual.
Regards,
  Rob

[Omaschwannoma]

Thank you for sharing your son's story.  I'm so pleased to hear he is well, interesting regarding the Reiki therapy also.  Once again, the treatments, approaches to surgery, and size/placement of your son's tumor reminds us our AN's are unique as the individual.  Glad his outcome is moving forward!  With AN's there are no "wrong" choices.

[robynabc]

Thank you for well wishes.  Just trying to get all information out there.   Like Jim,  I feel like I just want to see others benenfit from good experienced doctors so less and less nightmare  complications happen from docs that should not be doing this surgery. I personally think that unversity settings or House is the way to go.  Just my humble opinion. Everyone knows best what is right for them.   I know that our docs do not experience great results with every surgery. 

Rob,  thanks for letting me know about the scar tissue.  Much more reassured by that.  Do you know if scar tissue can grow again?

I don't want anyone to think they have done the wrong thing if things are not as good.  I just want to help pre surgery patients as much as possible.  Things change all the time and they get better and better at this surgery.  The thing I hate to see is poor results only because a doctor is doing a surgery he or she shouldn't do.  It still is brain surgery along with nerves. 

And as a 43 year old we all know that the young ones get through this stuff easier.  Oh to be 18 again.  They do recover faster because of age. 

Have a great day.

Robyn

[HeadCase2]

Robyn,
  I don't know if scar tissue can begin to grow into AN or not.  The radiologists reading the MRI may not be able to tell the difference between scar tissue and residual AN, which is probably why they tell us that they want to monitor with periodic MRIs.  I would think that an AN also needs a blood supply to grow, and treatment would disrupt the AN's blood supply, so hopefully even if there is some tiny residual tumor it won't begin to grow.
Regards,
  Rob

[satman]

Sounds as if Eric is on the downside of things ,HOORAY !

[jerseygirl]

Robyn,

Unfortunately, the scar tissue can begin to grow but it happens over the years to a small percentage of cases. This happens more frequently to young people, especially females. Nobody can predict what is going to happen to it if anything, so they just monitor it over a person's lifetime in case it does grow. That is what I learned about my scar tissue that eventually regrew and I had second surgery the same day as Eric when I was 44 year old. Congratulations to Eric but it is also wonderful to have a mother! Congratulations to you, too!

It is funny when you mentioned the age. I could not handwrite after my both my surgeries but at 25 I could handwrite with my left (non-dominant) hand which I could not do at 44 as I found out. I remember filling out long applications with my left hand back then. 18 is a good age, I will take it. But 25? I will pass! It was my worst birthday so far. You don't want to know what AN surgeries were then.

                    Eve

[sgerrard]

Robyn,

It sounds like a good MRI result to me. I hope something develops with that throat nerve, that seems to be the main remaining hurdle for Eric.

I would not worry about the scar tissue, which is what it most likely is. It would take some time to start regrowing, if it ever does; and even then, maybe a little zap of radiation would finish it off. It is very unlikely to become a big deal. OMG16's son, who has had plenty to worry about at his young age, told her one time "No sense in worrying until you have something to worry about."

I agree with your comment about university settings, the academic world is a good place for medicine, with lots of good minds, and lots of cross-checking and paying attention to details. They can be busy and hectic, but the care is as good as it gets.

Best wishes to you and Eric,

Steve