ANA Discussion Forum
General Category => AN Issues => Topic started by: cheza on May 07, 2009, 08:16:44 am
-
Hey all,
Well I can't quite believe it yet, the sunken feeling in the pit of my stomache, the numbness as I left the hospital, just when I thought things were gettiing better WHAM!!! I've been hit with the bulldozer affect.
It would seem that my small enhancing area is growing, its 8.25 x 8.9 x 7.65 mm last year it was 6.25 x 8.05 x 6.20. it has only been 18 months since my surgery I didn't expect any regrowth and espescially a regrowth so soon.
I cannot believe I have a regrowth I thought it was over, done, finished, I thought I could get on with my life.......it seems life has other plans.
Everyone has been saying how well I look and how well I'm doing, starting to be myself again, but now out comes the brave face again and I'd only just put it away.
My doctor has mentioned radiotherapy but only briefly, he has said I won't need to start it for a couple of years maybe and to be honest thhey don't like young people having it because they don't quite know about the long term affects it will now all depend on my next MRI which will be March 2010.
Looks like I'll be joining the watch & wait guys.
Take care everyone, please pray for me I think I need all the help I can get, i don't think god wants to listen to me.
Cheryl XxX :'(
-
Cheryl ~
I'm so sorry to learn about the re-growth of your AN. I'm certain that God does listen to you but often His plans for our lives are not necessarily our plans. We don't live our mortal lives in paradise and bad things can and do happen to good people. Please know that you'll be in the thoughts and prayers of many, many people until your next MRI. I hope that scan finds the AN either shrunk or at least 'stable' (no growth). Meanwhile, keep that brave face - and strong spirit.
Jim
-
to be honest they don't like young people having it because they don't quite know about the long term affects
I think they are surgeons and don't want to know about the long term effects. There have been quite a lot of studies, spanning 20 years now, and every single indication is that long term effects, if any, are very minimal. At this point, the statistical chance of there turning out to be some big effect is virtually zero.
I am sorry to hear about this regrowth. When the time comes, I would go get it zapped and be done with it. Meanwhile, get on with your life and don't fret over this.
Steve
-
Sorry to hear about the regrowth Cheza. I'm in the same boat, but I had radiosurgery the 1st time around now I'm going for surgery. I'm not a very religious guy but maybe its all part of the plan. I wouldn't be doing some of the things I'm doing today (one of them being the founding of a charitable event) if it weren't for the fact that I have a AN. I know all too well how hard this has hit you. Put on your best brave face and go out and dance.
-
Hi thank you for your responses your all very kind.
Since posting I have had time to think, and I have just one question, for now at least.
My regrowth is from the bit of tumour left behind which happens to be on the facial nerve, has anyone else had a regrowth on the facial nerve and if so has it affected your, I say this loosely, hearing, i.e. tinnitus on your deaf side, feeling in your tongue and finally has it hindered or worsened your paralysis recovery ?
Thanks Cheryl XxX ???
-
Cheza
I'm really sorry to hear of your regrowth particularly so soon after surgery; that's a tough blow. The strength you obviously had to get through it the first time round I am sure will hold you in good stead for a second round.
Kimbo
-
Hi Cheryl from the other Cheryl. I am not the typical ANer at all as I have NF2 but I had an actual facial neuroma after already having an AN on the same side. So mine was not a regrowth. I was already deaf but I am guessing that the type of surgery you would probably have would be translab. I do not know this for sure. My dr warned me ahead that if he severed the nerve than he would take some nerve from my ear and graft in. This did happen. My recovery was like regular AN but yes the facial paraysis was there. I was told that it would be a good 8 mos before start to see improvement and that was right on. I am not ever going to be normal but my eye cllosed in time and I look ok with face at rest. I do not have complete movement but some. You can see by my profile that I don't look too bad. I think how a dr would work with the facial nerve varies by their abiltiy. I felt I had good results considering from this. You could end up with any of the usual post op possibilities. I have never had any facial or tongue numbness. I have a numb ear area which is much less now than at first. There is the possibilty of removal of tumor from the facial nerve and it not being severed. You would have to talk to your dr and see if he has done this. Mine was 2 cm.
I am sorry you are having to go thru this now and have such a worry. Good luck. Cheryl R
-
Oh Cheryl,
I read the title of your post and my heart sank. This is so not fair, just when you were starting to feel like your life was getting back on track.
I am having my one year MRI on May 11th and I am so teary about it. I feel like I will have regrowth, I hate to say it and jinx myself but I feel like it is going to happen. The surgeon left some tumour to save my facial nerve. It all started with one crazy cell.....
Lean on us, we are here for you. You are a fighter, a surviour! You are not alone!
Hugs Michelle :-* :'(
-
Cheza,
I'm so sorry to hear about your regrowth -- it is every ANers greatest fear. I hope W&W is as far as it goes.
Wendy
-
gawd am so sorry too hear that , I have a tiny piece left on my facial nerve as they tried tried to remove it but it was stuck on, i really worry about his kind of thing happening my next scan is due in oct. this year, Cheryl did they say why this would happen? i will be saying a prayer for youx
-
Cheryl,
There is actually more and more talk about using radiation after surgery when a small part of the tumor could not be removed without damaging the facial nerve. Have you talked to any GK/CK centers yet? If it were me, I'd attack this BEFORE it gets much bigger. Symptoms only increase as the tumor grows, and your 2 MRI's show it IS growing. Watch and Wait is a gamble, but it works for some people who, for some reason, the tumor just doesn't grow.
I will pray for you doubly since this is round 2. I don't believe that God has abandoned you. Look what his only son had to go through so that all of us could have eternal life! Perhaps this will send you on a new path, and if nothing else, will make you a person others look to for strength when regrowth occurs.
Ernie
-
cheryl!!!!!!!!!!!! :-*
I'm at a loss... I'm sorry to hear this update...... truly! Hugglez to you!!!!!!
I have to agree with Steve and others about doing radio on the regrowth. Age should not be a factor at all and sometimes it is used as a "scare tactic" by those not all that familiar with AN radio treatments. Actually, the smaller the growth, the easier it is to treat with radio... I've seen Drs Medbery and Spunberg talk about it on the CK forums.
I don't know how to help that sunken feeling in the pit of your stomach, but know that, as always, I'm cheering you on and sending the wellness wishes. Will look for the updates and ... please hang in there.
Phyl
-
Maybe you could kill it or keep it under control with low dose FRST (fractionated stereotactic radiotherapy) with much fewer side effects than from surgery. Dr. Gil Lederman does ithis in NYC. It is still small. I emailed the doc with a few questions and he answered me (within 6 hours) on his Blackberry!
-
Well, this is NOT what you wanted to hear from the MRI report! I am so sorry for the regrowth. We all know it is a possibility,and always have that worry lurking at the back of our thoughts. I would definitely look into a low dose radiation type of thing. I think there are people on the forum who have done that. Facial nerve......hmm-m-m-m-m. Wonder how that will work....
Priscilla
-
regrowth
Hi and thank you everyone so much for you kind thoughts and prayers.
Firstly the radiotherapy thing, I am unsure what is available here in the UK on the NHS, I feel that not much was said to me the other day (Thursday) at the hospital one because to be honest nothing much is ever said to you when your on the NHS and also because what ever I have done on the NHS costs ££££££s so their not so quick to give it away, unless absolutely necessary. Talk of GK or CK don't even come into it most of the time you don't get options just recommendations, Unless of course you go private which depending on the answers I get next week, will be under consideration. I intend on calling my Doctors next week, since Thursday questions, questions, questions are popping into my head, I need answers, answers, answers.
For example: why such a sudden regrowth, how common is this with patients who have tumour left after surgery, what size was the tumour after surgery, what are my options for radio therapy, why do I have to wait for radio therapy, why can't they just zap it now, what are the side affects, will it make me infertile.......the list goes on and on.
I need to thank you all again, I know god hasn't deserted me I just wanted someone to blame, I do wonder what it was that I did that was so wrong in my life that it means I'm now being punished, but then I get a grip and try not to think so negatively. Fait has its plan and this must be mine.
Take care guys and I'll keep you posted.
One last thing "Learn from yesterday, Live for today, and Hope for tomorrow"
Cheryl XxX :-*
-
One last thing "Learn from yesterday, Live for today, and Hope for tomorrow"
I love that part Cheryl. Hugs Michelle ;)
-
so sorry for you, how can this be so sudden? god hasn't desserted you.I believe it really helps to have others thaughts and prayers on your side and God doesn't put in front of you things you cannot handle.
-
Cheryl,
I think "Learn from yesterday, Live for today, and Hope for tomorrow" is the most encouraging words I have read in a long time. Many hugs and kisses from Canada. :-* :-* :-*
The best to you,
Anne Marie
-
I'm sorry to hear about your regrowth. :-[ I'll pray for you. My Drs. also left a smidge of tumor on my facial nerve so your situation speaks loud to me. God hears you.
-
Cheryl, How are you today? I am so sorry too, hearing about your regrowth.
I can't understand how you must feel about this since i am in W & W.
But the more i go along on this journey, the more i am thinking i need to do something sooner rather than later, before things change too radically.
I would get answers to the radiosurgery. I am considering this myself and always wonder - should i wait or just go for it now? ???
Some people seem to have less side effects when treated and the AN is smaller, though this is not always the case.
My thoughts and prayers are with you, too.
Keep us posted - we are there for you.
Sincerely,
Sue
-
Maybe you could kill it or keep it under control with low dose FRST (fractionated stereotactic radiotherapy) with much fewer side effects than from surgery. Dr. Gil Lederman does ithis in NYC. It is still
Cheryl -
tuning in late here, but want to add my support to what the others have already given you.
While I'm sorry about the regrowth, I'm hopeful that watch and wait or radiation might provide a solution in your case.
Nicole -
I don't want to open a can of worms here, but I thought there was some kind of controversy related to Dr. Gil Lederman. I don't remember the specifics, but if you search the forum you'll probably find the thread.
Jan
-
Hello Cheryl,
I'm so sorry to hear the you are having regrowth. My 20 year old daughter is dealing with that also. She had surgery on a very large tumor in summer '06 followed by 28 days of radiotherapy. They were only able to remove 70% of the tumor as it is in a critical area and said to be hard as a rock. We were all hoping the radiotherapy would stop the growth, but in Jan. '09 an MRI confirmed its growing. She will be going in for surgery again on June 1. This time they will do it trans-lab since she is deaf in that ear. Surgeon said he would have a better view of the facial nerve.
I have to agree with some of the others here that your situation is a good one for radio-surgery. It is worth looking into. Although Chelsea's treatments failed, it seems that the most are successful.
I will keep you in my thoughts.
Take Care,
Michelle
-
Hi Michelle,
I feel very much for your daughter, I was 30 when I was diagnosed and thought I was young, as any medical statistics that I have seen show AN patients to be in their later years of life i.e. 50 - 60s. I'd love to know where they get those statistics from??? If I'm not mistaken there was a thread on here not to long ago asking how many AN Patients were around the age of 30, ( there was a lot) Anyway age isn't really the issue, but the fact that she is only 20 means that she should recover well, as I have, until now that is.
I had trans lab 18 months ago, I came out of the surgery fine my face was normal I was speaking to the nurses the only thing was I could not stop shaking but that was the affects of the anisetic. about 2 hours later I had a strange feeling like pins and needles in the left side of my face and quick as a flash my face just dropped, within about 30 minutes I'd gone from normal to a grade 6 facial palsy, I was a little shocked at the time because I was so pleased that my facial nerve (I thought) was clearly undamaged.
I'm a grade 4 now and getting better all the time, although I do wonder if that’s all about to change with the tumour that was left on the facial nerve now growing.
I hope everything goes well for your daughter, I will keep her and you in my thoughts, as a patient it’s sometimes easy to forget that those closest to you are fighting their own private battle.
Take care and wish your daughter well.
Cheryl XxX :-*
-
Cheryl,
I'm so sorry to hear about this. I hope that whatever you decide to do, it will be the last thing you ever have to do about this. Stay strong.
Marci
-
Cheryl,
Just a thought.. if radio is an option that you are willing to consider, I can note that Gamma Knife and now, Cyberknife, are offered in London (if you can get there). I know there is a fairly new Cyberknife Center at Harley Ave in C. London.... by fractioning the treatment, it should be easier on you, since you've been through so much. I'm just tossing this out as a potential option.... no biggie.
xo
Phyl
-
Hey phyl,
My doctor has told me that GK is available at sheffield and this has been open since 1985 and was the third one to be opened in the world, so I'm kinda hoping they know what their doinh by now.
Thankfully Sheffield is only 1 hour drive away.