surgery - no choice ---

[DeniseSmith]

Sorry, I have not responded sooner.  I only have access to the internet through work.

My dr. said the tumor and facial nerve were like speghetti and it was impossible to get the whole thing without cutting the nerve. He did this to remove the whole tumor. He said he had not seen a tumor this big in about 8 yrs.  I had been having symptoms for a couple years, but brushed them off as something else. Headaches from stress and using the computer at work. Dizziness because I didn't eat a good breakfast before working out.  Actually, when I really think about it I have had the dizziness issues for many years. I wish I had paid attention and gone to the dr. sooner, but from reading some of the entries here, they still might not have diagnosed AN for a few years. 

I go back to see him in May for and MRI and one year check up.  I am really worried, that it will somehow come back.  Also, I wonder what are the chances I will get one on my right side??  Maybe i shouldn't think about it.  Maybe I will only end up with more gray hair. HA HA!!

I have been reading some of the other responses, and you know, when I was 12-13, and in 7th grade, I had a mild concussion and was in the hospital overnight for observation. Now I wonder if that might have been the start of all of this.  I wish I knew.

But on a positive note.... at least in some sense of the meaning.... a good friend of mine told one of her friends about me and she was experiencing some similar symptoms, went to the dr. right away and they found a mengioma tumor. So she is in the wait and see phase of her tumor.  I am glad my experience helped to someone not postpone going to the Dr.

Denise

[Sanddollar]

Denise,

I am sorry to read about how difficult your experience has been.  I did want to offer one bit of comfort, however.  In your last post you mentioned that you were concerned about getting an AN on the other side.  When I was first diagnosed that thought occurred to me as well.  I asked about this and learned that unless you have a rare condition that causes tumors to grow on the cranial nerves in general, you have next to no risk of having an AN grow on the other side.  It is that random and rare.

I have yet to have surgery - mine is scheduled for late January - so I may yet share in some of your journey.  I can tell you that when I was first diagnosed and scared out of my wits that I found great comfort here on the site.  There is always someone here that shares in some aspect of your situation and can provide perspective.  Stay tuned, as we will to follow your progress.

Sanddollar

[DeniseSmith]

Thank you, Sanddollar!

I  wish you the best in January, I hope you have minimal obstacles to overcome or none at all, once your surgery is complete. 

Be Safe,
Denise

[Sanddollar]

Denise,

Thanks so much for the well-wishes.  I am hopeful that my outcome will be positive, but with nerves you just never know.  Such tricky, delicate things!  Once the surgery is complete and I can function well enough to get online I will start a thread with my experiences, so watch for it in early Feb.  I have gained so much from what I have learned here, I feel the need to contribute what I can. 

Best wishes for the new year!

Sanddollar

[msuscottie]

Denise,

You're not alone. My situation was very similar to yours. I cut my head last summer, went in for stitches, they did a CT-Scan for the hell of it and eventually found a 3.5cm AN (No Symptoms at all), They didn't give a choice, it had to be surgery because it was embedded in my brainstem, smashing some of the other nerves and so on. After stage 1 in which they removed the embedded portion from my brainstem by brain swelled and compressed the stem which kept me in the hospital for 31 days, I lost my whole left side, very weak and uncoordinated in addition to the hearing, balance, facial numbness, eye problems, blah, blah, blah. This was last October and now on Feb 1st I go in to have the residual tumor removed. How exciting, huh?

Dr's told me that I am a case study, will be written about in text books and cases like mine only come around once every 10-20 years. Because of my issues, they have now started putting shunts in to some folks prior to surgery, thus, proactively anticipating swelling. I think it sucks too. Everyone says I'm "brave," and "strong" and that's nice, but I still can't get past people calling me "lucky" or saying that "it could be worse." I try to keep a good attitude about it, but I understand your frustration. You're not alone ... I have a full account of my story, if anyone is interested just email me at sryan@villagegreen.com

[Crazycat]

Hey Scottie....

             Just read your post and it scared the hell out of me. I had a gargantuan tumor and didn't go through what you did. They did, however install a shunt before taking the tumor out.
The neurosurgeon told me I had two problems between the fluid build-up and the tumor.
You gotta see the MRI photo of this thing at 5cm x 5cm. I'd like to post the scan i did but need some pointers on how to do it. That "insert picture" icon above isn't doing much for me.

Paul

[DeniseSmith]

Good Luck in February, Scottie....
please let me know how your're doing.
I agree, if one more person says how lucky I am, I just might explode!!  I also have poor coordination on my left side, and I am just starting to get the hot/cold feeling back on my right side, and I am also, starting to feel pain on my right side.  It is very weird, I take a hot shower and the left side is nice, and the right side of my body it feels room temperture.  My surgeon calls it a "brain stem insult", that while they were removing the tumor they tapped my brain stem.  They should be more careful!!!!


Good Luck in Feb.
Denise