ANA Discussion Forum
Archive => Archives => Topic started by: Crazycat on May 04, 2006, 08:24:34 pm
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My M.R.I. scans...Hope this works!.....Paul
(http://www.mustangmods.com/ims/u/948/1254/51450.jpg)
(http://www.mustangmods.com/ims/u/948/1254/51451.jpg)
(http://www.mustangmods.com/ims/u/948/1254/51452.jpg)
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Paul those scare me every time I see them. Here's my fluffy ice cream cone of 3.1 cm:
(http://image1.frappr.com/pix1/i/20060407/a/8/7/a87ac5640eb457b8209d33674f9e8f640)
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Mr. Cat
You are lucky to be alive--musta been the rock 'n' roll! I've seen MRI's on the web of large ANs your's takes the cake! Bravo to your surgeon.
Captain Deb 8)
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WOW :o ÂÂ
What were your symptoms? did you have headaches? Ditto what Capt. Deb said, bravo to your surgeon!
Gennysmom - It does look like a fluffy ice cream cone. Very symmetrical (must be that virgo thing again)
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I'll say it again Paul, WOW. I can't believe the size of that tumor. I hope things continue to improve for you!
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It IS a Virgo thing!!!! see the three nicely formed scoops? That would be peanut butter and chocolate, cookie dough, and moose tracks. All my favorite flavors.
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WOW Paul, You win! What we're not sure LOL You had some awesome docs working on you!
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Raydean and Chet, do you have photos to share? I'd love to see them. And everyone else....I'm finding I'm fascinated by MRI slides.
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Wow is right. I still can't believe it when I look at those scans!!
  No Matti, I never really had much in the headache dept. My big problem was equilibrium and double vision, especially toward the end - and of course increasing deafness which I started noticing since 1999. I remember in January, 2002, the double vision started and I lived with that with no problem, even though I knew something was terribly wrong with me. Working as a musician 4-5 nights a week I figured that it was all ear related and had even come to the conclusion in my internet searching that I had an acoustic neuroma. But I needed the proof that only an MRI could provide.
 The average night at work went like this: I'd show up at the venue looped; feeling like I was on the verge of coming down with the flu, almost feverish and achy and always lightheaded. Yet, when it came time to work, to move gear and exert myself, I felt fine. By the end of the night at 2:00am I'd feel almost normal. This went on for two years or so. I was also jogging 5 miles a day during this period and when I'd complain about my symptoms, my friends would quip, "You're not jogging enough!" I thought at times I was hypoglycemic. I had friends that had type II diabetes. Several times they'd test my blood sugar with the kits that they carried around with them and my readings were always normal. They'd say, "whatever it is that's bothering you it's not that!"
 It wasn't until Feb. 2005 that my equilibrium really went on me. I couldn't even walk downhill without having to grab hold of something to break my forward momentum. I was staggering around like a drunk. I began to think I had either M.S.or a brain tumor. There were a few times the soles of my feet were burning. I remembered reading that Montel Williams, the tv talk show host and former Navy Seal that has M.S. reported having the same symptoms. Also, my handwriting was deteriorating.
 There were several moments that I remember as being especially powerful that I'll never forget. Moments that demonstrated to me very clearly that I was in deep trouble and something had to be done about it because there wasn't much time left.
 The first moment came when I drove out to a place where I used to run alot - a huge cranberry bog. I walked out to the path to begin and I just couldn't do it. I couldn't even take the first step. I knew I was done. The next moment came when I was trying to run, or let's just say, walk, at this point, down a trail in the woods - very hilly terrain. This was in March, 2005. I could not even remain upright going downhill. I ended up on my ass and crawiing down the hill and it was cold and rainy that day. I went to see my family doctor who always saw me as as an extremely fit and healthy person. At one point, during the exam, he looked down at his paperwork and declared, "I'm sorry.......You're sick, I feel bad". It was at that point things started happening in the way of treatment.
 After that MRI, the doctors were kind of looking at me like a freak of nature. They couldn't believe that I had gone as long as I had.
I was lucky to have the people working on me that I had. The neurological staff at Mass General and Mass Eye & Ear are top notch.
  I had problems with fluid as well. Still have the shunt in.
These days I'm doing well and back to my old routines but I still have more healing to do. I really haven't had to take so much as an aspirin since October! I have another MRI coming up next Thursday.
            Paul
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Paul,
I can only say OMG! and I am so happy you made it through. Phyl says you look fabulous and that you would never know you even had the surgery. I am jealous! ha ha!
I am happy you made it, I am happy to be your AN friend, you are much appreciated by me!!!!
Denise
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As with everyone else I am amazed at the MRIs. Obviously, your general overall physical conditioning was a contributing factor in your coming through in so well. Good for You! I thought I was doing great but I sure didn't have that to contend with. Keep up the great attitude and don't neglect that physical conditioning. Do what you can. I'm only 3 weeks post surgery but have started (at least to attempt) to jog again. Keep us up on your progress....Man, I am so impressed. Your doctor's were great.
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now, having seen these MRI films up close and personal.. trust me, seeing them on a computer monitor does not do them justice. BUT, the sucker was big, CrazyRockerDude is doing fabulous and you'd never know that he had this sucker in his head nor went through surgery in the past year. He looks, sounds, acts (ok for the most part!) normal! :) Does say a great deal about medical care in Boston... gawd, does that sound biased or what? ;) (go BoSox!)
Paul, I commend you hun and I feel another coffee run in our near future! :)
xoxo
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wow, appears slightly bigger then mine :o
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Thanks for all the kind words and inspiration everyone!! I'm so happy to have found this forum and be able to communicate with all of you!
And yes Phyl, it's almost coffee time again!
Paul
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works for me Paul... Need to find an all-night coffee house so we don't get kicked out again! :)
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I'd have to have my more computer smart then me daughter help me with the scanning part.
I'll see what I can do
Boy, Paul looking at your MRI brings back alot of memories. We haven't look at the films in at least 4 years. Last time was when my grandson was 4 and needed to bring something to school beginning with a an X. (They were learning the ABC"s) We dug into our MRI file and had him take the healed broken ankle scan. Was a big hit with the pre school set.
I'd like to add when I see Paul's MRI and see his positive outcome, as well as Tom's I am amazed, and truly grateful for their positive example. With giant tumors the list of possibilities (risks and outcomes) grow far beyond what you would normally associate with a Acoustic Neuroma . If having a giant brain tumor wasn't enough to scare you, the giant list of "we have to tell you these things might happen" definitely will. Some of the issues are quality of life issues. Pretty scary place to be.
What Paul and Tom both had in common is an medical team with vast experienced in the treatment of AN's. I know I sound like a broken record, but it's so critical, especially with giant AN's and makes such a difference in the quality of life issues. For the best possible outcome it's important to have the best of the best. Paul is living proof of this!!!!
Paul, thanks for sharing and for your positve example.
Raydean
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Wow! How big was your tumor? I am so happy that you have had such a positive outcome! Hoping your recovery continues to be a success!
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Shoegirl,
The size was reported as 5cm x 5cm but it appears to be much bigger than that on the MRI scans. I really haven't had time since Friday afternoon to sit down at the computer - it's been a busy weekend!
This allergy season is ridiculous! Talk about a double whammy. Living with the after-effects of surgery, i.e.: dry-eye and equilibrium problems now compounded with itching, burning eyes and sinuses!! Lots of fun.
Just woke up from a two hour nap.
My recovery has been good so far though - thankfully. I have a follow-up MRI scheduled for Thursday morning with a return visit to the neurosurgeon on the 18th. I will try to aquisition a copy of the new scans.
Also, I feel the need for a coffee run with Phyl this week!
Paul
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Paul,
Hope you are feeling better. I have been taking allergy meds this spring. I didn't realize I had any allergies. Hope all is well.
Tomorrow is my 1 yr mri and appointment with my surgeon. I am both anxious and a little scared. i keep thinking what if they see regrowth, even though they cut my facial nerve to "get it all". My BF, Darren, says i am to stop dwelling, that I am only freaking myself out. He's probably right, but i can't stop thinking about it.
Denise
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Hi Denise,
I know what you mean. They left a very small amount of the tumor in me to avoid cutting the facial nerve. So, there's probably more of a chance it will come back in my case, even though, the doctors have said it is, nonethless, a very small chance. If it does start to come back it will be cyberknife time!! God, I hope not. Phyl is a great person to confer with in that regard.
I once asked my doctor how long I'd have to worry about this thing growing back. He said, "How long do you plan on being around?"
He then went on to say there was one person that didn't have any regrowth until ten years after surgery! So it looks like this is something we're going to have to be vigilant of the rest of our lives!
Take care, Paul
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Thought I'd move this post up to the forefront before it gets lost in the shuffle. It should be seen. Thanks to the highly skilled and experienced doctors at Mass General in Boston, I got through with shining colors!
Paul.