ANA Discussion Forum
General Category => AN Issues => Topic started by: Jwh on July 08, 2008, 06:17:57 am
-
Well went yesterday for my MRI on my regrowth after having Retro surgery in 2001. I found out in 2007 that in fact I had a regrowth now I've been waiting and watching. Doc said yesterday it's time to do something about it once again as my MRI has shown growth. My tumor is now approx. 1 cm and kissing the brain.
I'll probably go in for Translab at NYU in October. I can't believe I have to do this once again. Wishing there was a magic pill to get rid of this thing once and for all!
Thanks for listening.
Jen
-
Jen,
Just read your post this a.m. and want you to know how unhappy this makes me feel. I'm so sorry you have to face this again. I'm sure it's very upsetting and frustrating for you. Was the first AN difficult to remove--what size was it? If it's any consolation, I have heard the second time around for treatment isn't as bad as the first. I hope you can find some kind of peace during this time. Any thoughts on what your treatment will be? Again, very sorry to hear this news.
-
Jen -
I can't believe you have to do this once again either and I'm sorry that you do :( If there were a magic pill, believe me I'd give it to you in a heartbeat.
The odds of regrowth are only 1-2%, so you certainly are a "rare" patient. There is another member of the forum, ironically named "onceagain" that just had a second surgery due to regrowth. You might find his posts helpful.
We are here to support you in any way we can. Please keep us updated and let us known when you have a surgery date.
Hang in there,
Jan
-
Jen
I also was told, at the end of March, that my AN had regrown after 12 years. The first surgery was at the end of March in 1996. I had never been told that I needed to moniter my AN with follw up MRIs. Needless to say the floor fell out from under me. The regrowth (3.5cm) was bigger than the first(1cm). I had surgery on 6/4/08 and am so far recovering well with only(so far) minor post surgery symptoms(novocaine face). I am to go back for an MRI in Aug. The An is still wrapped around my facial nerve but DRs feel that I am a good candidate for watch and wait rather than radiation as originaly planned. I am not sure what I am going to do at this point, all that I do know is that I want it GONE. I don,'t think that I can stand being told that it is growing again( I also understand that there are no guarentees even if I do radiation now). I wish you the best of luck and Drs as you deal with this ONCEAGAIN
Onceagain
Thom
-
Jen:
I too am sorry to hear about your unhappy news about regrowth. Hopefully, someone will discover that magic pill soon. I had my surgery in April 2007 and they had to leave a small piece of the tumor to preserve my facial nerve. I have my one year MRI scheuled next month and I'm nervous about regrowth.
Linda
-
Hi, Jen:
I'm so sorry to learn of your re-growth, which is every AN patient's fear. Although the odds of re-growth are quite small, statistics don't mean much when it happens to you. You seem to be handling it well and of course, we all hope and will pray for a successful surgery, no complications and absolutely no re-growth, this time. If you get a firm surgery date, please enter it on our 'treatment calendar'. http://my.calendars.net/AN_Treatments
If you prefer, PM me and I'll be glad to enter it for you.
I had the surgery/radiation treatment that, to date, has proven to be very effective. The AN is debulked (hollowed out) via surgery then zapped with successive low-dose radiation (26 30-minute sessions). So far, so good. My neurosurgeon has said this will be the preferred treatment in the future for large ANs, based on it's success. We'll see.
Jim
-
Jen-
I am SO sorry to hear about the regrowth. Please let us know when you're going back in. Also, since I just had translab at NYU - who are your docs?
Prayers coming to you.
Debbi
-
Thanks for your replies and support! :)
Arushi to answer your questions my AN was 1.3 CM when I had it removed in 2001. It was a very clear cut case as I was told by the docs and they were sure they removed the whole tumor. The surgical reports says the tumor peeled right off.
At this point in time I've been told a cell must have been left behind. Lucky me!
Regards, Jen
-
Jen, I will only speak for myself, but that has to be one of the biggest "fears" during an AN journey.... chance of regrowth. Although rare, we know that it can happen... and for me... truly... one of my fears during this journey we didn't ask to partake.
I send hugglez.... and wishes... and wish I could do more... but I'm cheering you on as you endure the next path.
Continued wellness wishes.
Phyl
-
Didn't Carrie just have a "onceagain" surgery? I know she has a thread going. Sorry to hear about the regrowth - just curious why you are opting for translab this time?
Best wishes,
Tammy
-
Hi Jen
I too am sorry that you have to go through it again. I know what one in a lifetime is like -- I can't even imagine considering it again. Has anyone suggested radiology as an option?
And yes, in answer to Tammy's question, Carrie did have two surgeries.
Best wishes,
David
-
Jen,
I responded to your other post before realiizing you are dealing with a regrowth. I'm so sorry--as Jim so aptly put it, knowing a regrowth is rare doesn't help a bit when you're the unlucky statistic.
I just had a regrowth removed (1.8 cm in feb of this year, 5 cm in 1989), and was told EXACTLY what you were--total removal then, must have been a stray cell left behind.
Did you have balance issues/loss of hearing or other post-op issues after your first surgery? The good news is that you may "get off easier" this time because your brain has already compensated for any nerves previously damaged/sacrificed. Even though I'm very achy and fatigued (16 days post op), since I don't have to deal with the balance/facial palsy issues , I can feel that I'm healing at the speed of light compared with last time around...
Please feel to PM me if you have any questions, and best wishes to you!
Carrie
-
:D Hi JWL,
I also had a 1 CM (RT AN) removed retro in Jan of 2001 (supposedly total removal) but re-growth was confirmed in 2006 to about the orig 1 CM size--mine was intracanicular. I had 30 FSR at Mass Gen last Fall--will have my one-year MRI Oct 8--have you considered radiation?? I know you mentioned it was "kissing" your brain--I can only speak for myself, but I am so glad that surgery wasn't my only option--I am hopeful this Fall my MRI will show no growth and/or shrinkage.
Just wondering if you and/your MD discussed radiation at all...
I am sure you will make the decision you are most comfortable with...
FYI--Ted Kennedy is having radiation at Mass General and it's either the Proton Beam or LINEAC... (I had LINEAC)..
Best wishes, Mary from MA (one of the Maxwell Silverman's Brunch Bunch!) ::)
-
Jen,
Big HUG from Oregon State- being sent your way.
Daisy Head Mazy
-
Jen,
Don't know if you remember me - Al from Queens. I haven't been on the website for quite a while. Just had my 2 year check-up with Drs. G & R.
Write back to me to talk.
Al
-
Oh Jen my heart goes out to you. This sucks!! This is my worst fear as they had to leave some tumour behind. I understand when you say you don't want to go through it again. Why are you chosing a different approach for surgery? Is it because you may have lost your hearing and this gives the facial nerve a better chance? Just curious.
I wish you well on your journey - you are strong and got through this once you can do it again. Warm fuzzy hugs.
Michelle ;D
-
Jan,
I'm so sorry to hear about your regrowth. I can't say that I blame you for opting for surgery again but why translab? I'll guess the first time around the doc was able to save a lot of your hearing and this time it's gone down so much it's the only thing that makes sense but that' s just my guess. Whatever the reason, I wish you luck. Keep us posted as to what's going on and how you are.
Best wishes,
Wendy
-
I am sorry to hear for your regrowth Jen! I am in the process of choosing doctors for another time and i know how you feel!
it is very tiring and exhausting for sure!
since i had retro two times they offer me translab this time. Why did you focus on traslab? how big is the regrowth?
Hrissy
Jim,
having 26 sessions of FSR can you have any other radio treatment of anything else of your body till the rest of your life? are beams diiferent for AN and for something else let's say cancerous formation? I know that human body can have a certain amount of radiation and i wonder did you have the ultimate possible?
Onceagain (Thom),catflower (Linda) and cmp (Carrie),
i have almost as big as yours residual in my head and I wonder which your doctors were? I am considering HEI in LA, Dr John House. Do you have facial paralysis because of the AN surgery? how much did your surgeries cost? I don;t have an American insurance and i have to pay it by myself, which makes things very hard! :'(
Hope to hear from you soon,
Thank you and all the best,
Hrissy
-
Jen, Thom,
I can't believe you have to go through it again either. I can't imagine. But, if we survived it once we can survive again. If I have to do this again I'm going to ask for more drugs.
With all best thoughts,
Marci