MRI results show regrowth

[mimoore]

One last thing   "Learn from yesterday, Live for today, and Hope for tomorrow"


I love that part Cheryl. Hugs Michelle 

[Dismas72]

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. 

[yardtick]

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

[anissa]

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.

[suboo73]

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

[leapyrtwins]

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

[chelsmom]

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

[cheza]

 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    

[MAlegant]

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

[ppearl214]

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

[cheza]

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.