General Category => AN Issues => Topic started by: jerseygirl on January 03, 2009, 08:24:05 pm
Title: Clean MRI!
Post by: jerseygirl on January 03, 2009, 08:24:05 pm
Hi, everybody,
I just want to share the good (no, great!) news. My MRI just came out clean. The radiologist report says "No change from the previous one and no evidence of residual/recurrent tumor". This is incredibly encouraging. This is the second time in my life my MRI does not show anything; before, it always showed something which was always taken as a "scar tissue" until it actually started growing and became a tumor. This MRI was at a year and a half after the second surgery to remove the residual AN. I now can say that the surgery was very successful: no tumor, smile kept and no pain.Thanks to this wonderful forum for all the support and information you provide. I wouldn't have made the decision to go to SBI otherwise and who knows what would have happened.
I got the report in the mail and opened the letter with shaking hands as prayed for good results and realized that I have absolutely no energy whatsoever to deal with another growing AN. Whew, what a relief! My next MRI will be in two years.
Eve
Title: Re: Clean MRI!
Post by: nteeman on January 03, 2009, 08:49:19 pm
Wow, it is nice to read good news like that. Happy New Year and congrats!
:)
Neal
Title: Re: Clean MRI!
Post by: leapyrtwins on January 03, 2009, 08:51:10 pm
Eve -
fantastic news! I'm so thrilled for you ;D
Congratulations!
Jan
Title: Re: Clean MRI!
Post by: wendysig on January 03, 2009, 09:01:03 pm
Hi Eve!
What a fantastic way to start the New Year! Congtatulations on getting such wonderful news!!!
Hugs, Wendy
Title: Re: Clean MRI!
Post by: mimoore on January 03, 2009, 09:09:16 pm
YAHOOOOOOOOOOOOOOOOOOO!!!!!!
THAT IS AWESOME, GREAT, FANTASTIC NEWS!
Title: Re: Clean MRI!
Post by: MAlegant on January 03, 2009, 11:12:27 pm
Eve, That's great news! I'm happy for you and wish you a wonderful new year. Marci
Title: Re: Clean MRI!
Post by: Jim Scott on January 03, 2009, 11:35:01 pm
Eve:
I'm typing this message with a big smile on my face as I offer my congratulations and sincere wishes for unending 'clear' MRI reports. :)
Jim
Title: Re: Clean MRI!
Post by: sgerrard on January 04, 2009, 12:59:40 pm
Wonderful news! Congratulations, Eve. Have a great year.
Steve
Title: Re: Clean MRI!
Post by: jerseygirl on January 04, 2009, 01:44:49 pm
Thanks to everybody who responded! I am also grateful to those who posted their stories, doctors and outcomes. It was immensely helpful to me as I was able to search for the "right" doctor who could take care of my difficult situation. At the end, I am a happy camper.
I had my first AN surgery in 1988 and the forum did not exist. I found out somehow about ANA after my surgery (what did we do in those days without Internet?) and spoke on the phone with its founder. However, it was nothing comparing to what we have now. What a difference! Thanks again to those who contributes to this forum and keeps it alive.
Eve
Title: Re: Clean MRI!
Post by: mimoore on January 04, 2009, 02:50:17 pm
What is sbi? Did they leave some tumour behind the first surgery? Did you lose your hearing or have any facial issues? Why did you choose to do the surgery again instead of radiation? Thanks Eve, we newbies can learn from you! Michelle ;D
Title: Re: Clean MRI!
Post by: Patti on January 04, 2009, 03:03:00 pm
that is just awesome!!!!!!!!!!! patti
Title: Re: Clean MRI!
Post by: jerseygirl on January 04, 2009, 05:15:19 pm
Michelle,
SBI stands for Skull Base Institute. It is located in California and they do minimally invasive surgery where an endoscope is inserted into a small burr hole to remove a tumor. Instead of an electronic microscope, the surgeon peers into a computer screen where the image of what he is doing is highly magnified. The surgery takes much less time than conventional one, so less chance to have complications and less anesthesia are an added bonus. The scar is only 8-9 stitches.
I did lose my hearing in my first surgery but my facial nerve was saved. I had post-steroid facial weakness which completely cleared up after 2 years. The worst part post-op was pain which lasted for 10 years. Anybody who has those headaches knows what I am talking about and how interrupting they can be to one's life. I am not sure what I was afraid more of the second time around - facial paralysis or pain. Potential for no pain was what attracted me to the endoscopic method because if the surgeon goes through the existing metal plate with which my original hole in the head is covered up , then the body does not feel any pain because it is the bone, muscle and nerves hurt, not metal. I was right on that one, thank God! There was no pain whatsoever, I did not take morphine after surgery and not even Tylenol.
The reason I refused radiation is because radiation was not really easier than surgery, just different. No matter what I did, I was a complicated case. I decided to go with surgery this time and save radiation for later if the tumor recurs again many years later.
The tumor regrew because it was not all taken out originally but I was told after the surgery that it was. There was a piece left because, as my original neurosurgeon finally said, "it was hard to reach and extremely friable". No tumor is hard to reach with an endoscope and all neurosurgeons nowadays have access to gels and substances that control bleeding. The remaining piece was treated as a scar tissue when it finally started growing. It was monitored for 9 years and then taken out. You can read my story at http://thebraingang.wordpress.com/2008/10/01/eve-kotovich/ Scott, a member of this group, created this website to hold the stories from other members in the hopes of helping others.
Good luck to you, Michelle. I hope all your issues resolve. In my case they finally do but they sure take their time.
Eve
Title: Re: Clean MRI!
Post by: Jwh on January 04, 2009, 05:29:24 pm
that is wonderful news! I'm soooo happy for you!! Congrats...
Title: Re: Clean MRI!
Post by: jerseygirl on January 04, 2009, 05:43:53 pm
Thanks, Jen. I was just in the process to wish you the best of luck with your upcoming surgery when I saw this post. Hope you sail through that one! I know waiting before surgery is tough, probably the toughest part of the entire experience. I certainly have been there and can relate. I will be eagerly waiting for the news. I am pretty sure they will be great! Can anyone in your family update us as soon as possible?
Eve
Title: Re: Clean MRI!
Post by: mimoore on January 04, 2009, 06:08:53 pm
Thanks Eve,
I do appreciate your response. I am so happy to hear your good news, it is so fabulous!!!
After surgery I was faced with facial paralysis, hearing loss in my AN ear, and some tumour left behind (attached to facial nerve). My 6 month MRI showed no regrowth which is great, but I cannot help thinking I may have to deal with this again in the future. When my husband told me they left some tumour I cried thinking I can't do this every 10 years. And here you did and you are fine. The thought of sugery again makes me want to cry, just get my face moving again and lose it again. Chances are higher that it would reoccur again.
It was interesting to hear your story and how you dealt with it... not sure what I would do next time IF I need to. I am getting stronger everyday and back to work full time tomorrow (kindergarten teacher). I am happy to report that my facial issues are improving, if only the eye would blink I would be golden!
Anyway life is good and I need to focus on the positive, my great family and friends and know the greater universe is taking care of me.
Hugs Michelle ;D
Title: Re: Clean MRI!
Post by: leapyrtwins on January 04, 2009, 06:17:36 pm
Thanks again to those who contributes to this forum and keeps it alive.
Eve
Thanks to you too, Eve - since you're one of us who contributes and keeps the forum alive ;D
Jan
Title: Re: Clean MRI!
Post by: jerseygirl on January 04, 2009, 07:17:59 pm
Thanks, Jan! ;D ;D ;D
Michelle, when my "scar tissue" was officially declared a regrowth, I also did not know what to do. If somebody told me that 10 years later I would have another surgery thousands of miles away from where I live that would be totally pain-free, I would never believe it in a million years. However, this is what actually happened. Chances are very good that you will never have to do anything about your AN in your lifetime. However, if you have to in another 10 years, neurosurgery and radiation will be even more advanced and better than now. Chances are great that you will keep your facial nerve. Think positive! And enjoy your life!
Eve
Title: Re: Clean MRI!
Post by: mimoore on January 04, 2009, 08:31:03 pm
Thanks Eve! I am so glad things turned out so well for you. I am happy for this forum and the knowledge it brings. Each and everyone has something to give and for that I am grateful. It helps to keep us all informed and in the know. Michelle ;D
Title: Re: Clean MRI!
Post by: waypoint on January 04, 2009, 09:25:23 pm
Eve, That is wonderful news. I am estatic that your results came out clean. What an inspiration. I pray that my next MRI comes out clean also.
Title: Re: Clean MRI!
Post by: Tumbleweed on January 04, 2009, 10:34:25 pm
Eve, I'm late in reading this post but want to add my congratulations and well wishes. Yours is terrific news. I am so happy for you. Thanks for sharing this with us all. It's so great to hear about a successful outcome. It gives us all hope. And we're always happy when "one of our own" comes through okay like you have.
Best wishes, Tumbleweed
Title: Re: Clean MRI!
Post by: Debbi on January 06, 2009, 09:35:21 am
Eve-
I have been away from the Forum for a few days - so imagine my joy when I read your post this morning!! Now we have yet another thing to celebrate this Saturday!! I can't wait to see you Saturday and give you a big hug!
Debbi
Title: Re: Clean MRI!
Post by: jerseygirl on January 06, 2009, 02:39:53 pm
Thanks! I cannot wait to see everybody on Saturday! Sounds like it will be a big celebration!
Eve
Title: Re: Clean MRI!
Post by: hruss on January 06, 2009, 04:36:53 pm
your news really made my day!! Big congratulations, Eve!!