ANA Discussion Forum
General Category => AN Issues => Topic started by: Denisex2boys on March 22, 2009, 06:28:16 pm
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.... Well, that inevitable day is almost here ..... this Tuesday I have my 1st follow-up MRI since my Oct. '08 surgery. I then go for another Neuro. visit in April. I am so nervous about it - this is my 3rd MRI throughout this process and they don't get any easier ..... this one they tell me can last up to 2 hours! Why, I wonder?
I am just hoping that there is nothing of the tumour left - - they were very confident after my surgery and the CT scan that followed - I know I am in sure a FAR better place than some and I am so very thankful for that ...... I have a very close friend going thru cancer right now - so I really need to 'kick' myself sometimes and tell myself how lucky I really am!
I seem though to be at a stand still with recovery - - still, tip and side of tongue and facial numbness, headaches (albiet not as bad as they were), balance issues, and still no tears on the left nor saliva .... my face looks 'normal' other than a slight crooked smile and one eye slightly bigger than the other but to most - - no one notices - my residual effects all seem to be internal which is interesting in itself - one gal I have become quite close with does have very noticiable facial weakness but no internal facial, tongue or throat numbness - - - It relly is interesting how all our experiences are all so similar yet different .... BUT after all is said and done - - I am doing ok (Ok ... I mean excellent) and my hair is now about 1.5 inches long ......
......AND thus far I have raised $1,025. in sponsorships for the '5K Spring Spring' for the Brain Tumour Foundation of Canada .... so I am very proud of that :) I would encourage you all to participate in your local runs - - or sponsor someone you know!
I am working 5 days a week now - - 3 days from 8:30-2:30 and 2 from 8:30 - 5:00 - - fatigue is not as bad ....... I am walking approx. 3 miles on my lunch break - - I do find that if I do not keep up the walking for the vestibular rehab - that my balance issues get worse. I am also starting 'body boot camp' this Wednesday, so we'll see how that goes :O
I am also looking into either a BAHA or CROS for my deaf ear - I find this really exasperating now that I am back in the 'real world' with work and driving - I know it will take time to get used to - but it really knocks my equalibrium off kilter.
Anyway .... please keep your fingers crossed this Tuesday - - I know it's only an MRI - but YIKS! it is so confining! :O
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Denise~
Sounds like you are doing GREAT!! Good luck with your MRI!!
K
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Congratulations on raising over 1K for your charity so far! That's just awesome!
I have to wonder why an MRI would last 2 hours as well. Mine was 45 minutes (only had one so far), and that was because it was done both without and with contrast. Maybe they just want you to plan for that long just in case? Like if there is a wait or something? I don't know.
In any case, here's praying that your MRI comes out clean!
Ernie
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Hi, Denise ~
Thanks for the update. Your progress is commendable. Even if you're not totally satisfied, you seem to realize that you're doing very well. Your observation that AN patients tend to have similar but yet sometimes quite different experiences is dead-on, and I agree. Your charity fund-raising work is exemplary and I wish you continued success with it, as well as a rapidly continuing recovery. The first follow-up MRI is usually a bit daunting and can stir emotions and give rise to our fears but I trust you'll come through it with flying colors. :) Be sure to let us know the MRI results.
Jim
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Hi Denise,
Best wishes for a clear MRI. You'll be in our thoughts.
Rich & Scarlett (SML)
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Hi Denise.
I'll cross my fingers ;)
Kenneth
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I wish you luck with your MRI. I have my first post surgery MRI coming up on 4/22 and I am a little anxious as well. I don't have any real issues other than SSD and an occasional dull headache but I am nervous none the less.
I look foward to reading your results and I wish you the best of luck.
Cheers
Neal
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Hi,
I'm almost 2 months post op, and it's helpful to see your progress and what you're still dealing with at 5 months post op. I have facial weakness / numbness as well, but none of the 'internal mouth' issues you were talking about. I thought what looked weird about me was my smile, but I just saw a few picutes of me and what looks weird is my eye. My 'good' eye looks like my bad eye. My 'bad' eye just sits there open, while my good eye is in more of a squint (I think it's tired from doing all the work?).
For some reason, I had a half dozen either MRI's or CT's at the hospital. 1 each before surgery. An MRI after surgery. Then a combination of either MRI or CT for the next 2 or 3 nights (in the middle of the night - the 'tube' was too busy during the day!). Half the time I was freezing, but I guess I got used to them. I just don't open my eyes and try to stay still so as to not prolong it. I was pretty out of it anyway. I don't feel so nervous about them any more. The first time I was.
Glad to hear you're making progress. Nice to meet you (I'm sort of new, and havne't seen you before)!
Keri
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Here are a couple of 'post noggin' MRI pics from the 24th of March '09 .....
I will be visiting my Neuro on the 17th of this month - so I still do not know if there is residual tumor or not ..... here's to keeping everything xxxx'd!
No more 'round' noggin ..... the 'spot' where the AN was removed ...
(http://i22.photobucket.com/albums/b333/Denisex2boys/head1after.jpg)
You can see the 'bands' in my brain as well as the plate on my skull ....
(http://i22.photobucket.com/albums/b333/Denisex2boys/head2after.jpg)
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Hi Denise,
Was the MRI really 2 hours? I can't imagine being in there that long.
Hope you're still doing well. I think it's great that you can work and get out and exercise at lunch! Wow.
So you won't know the results for sure until mid April or so? We hope all is well. Let us know.
I think it's great that you did the 5K for the brain tumor charity as well. I should do that sometime. I run a lot of races but have only done a few for a cause.
Keri
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Thanks Keri ....
Actually the MRI was only an hour - LONG ENOUGH for me! She told me my head was small and really had me all wedged in - that is the part I hate - I took a Gravol before I went and it relaxed me ..... No, I know nothing - - My hibby was a little miffed that I looked at the scans on cd - by know means do I even know what to look for - but did see some 'glowing' spots with the contrast portion - hopefully these are nothing as I am sure they aren't.
I go to LHSC where I had my surgery on the 17th - I am sure I will get a clean bill of health ..... may suggest though the possibility of the Baha or Cros .....
I have not run the 5K yet - it is on May 9th .... right now I am in first place for ONLINE donations - if I get the most online pledges then I will win a trip for two! So not to 'toot' my own horn - but if anyone (especially fellow Canucks) wants to sponsor me - I can run in all our names! http://my.e2rm.com/personalPage.aspx?registrationID=599851&LangPref=en-CA
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Denise, Good Luck on your followup. We pray all is well. Have you met with the Doctors? what was the outcome.
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Hi Denise-
Oh, your brain is so photogenic!! :D Actually,it is really nice to see a brain without a big white blob in it. I did see some whitish spots in my first MRI (4 months) but the surgeons told me that it was just some of the fat showing up. I am getting ready for my 1 year at the end of this month and am really anxious to see what it looks like. Fortunately, I get the MRI and results all in the same day so I won't have to go through the agony of waiting and wondering and trying to decipher the MRI myself.
As always, Denise, I'm sending big hugs your way! See you on Facebook....
Debbi
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Ok, Denise.. your nose is straighter than mine! Mine completely bends off to the right! (dang diviated septum!) :)
Congrats on the fund raising and for the BT support you are doing! MAJOR kudos! :-* :-* :-*
Will look for the updates to see how the appt goes...... unless I missed it here already ..... if that is the case, then shame on me!
Hang in there and congrats on great news thus far... and for ALL you are doing for BT patients! Truly!
Phyl :)
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YEAH!!!!! It appears I am tumor FREE! My Neurosurgeon noted that there were a few areas of enhancement but is quite confident that this is scar tissue and I am to have another MRI in a year when things are more settled. I do have some pretty cool ARTIFACTS though! Weird reflections and such .....
At 6 months out my Dr.'s Assistant said I was doing terrifically and could tell that I was really working on rehab - - the residual issues - - numbness on tongue, side of face, no tears, etc may or may not come back but she did stress that recovery can take a couple of years. But you know .... I am ok with that - and even if I do not get the full coordination, balance, etc. back - there are a whole lot of people in a lot worse place than me and I am so thankful that this was not a malignant tumor, I did get him check the 'cave-in' on my neck though - which I am told is normal .... anyone else have this?
...... SO HERE ARE THE LATEST and greatest ....... - - my noggin WITH hair - -
The hair on the crown on the back was not shaved off (so right after surgery I looked like Moe from the Three Stooges) - - but I have since had this cut shorter to 'mush' in with the new hair growth....
(http://i22.photobucket.com/albums/b333/Denisex2boys/IMG_0959.jpg)
Still a 'chunk' missing and the new hair is growing in fuller and in all different directions - - it is hard to even tell that I was shaved bald back here .....
(http://i22.photobucket.com/albums/b333/Denisex2boys/IMG_0961.jpg)
'Strike a pose big mama' - REASON TO SMILE
(http://i22.photobucket.com/albums/b333/Denisex2boys/IMG_0958.jpg)
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hello,
i had surgery around the same time as you. had severe dry eye, they stitched it partially closed for a while. my eye function is back and now my eye tears when i eat sometimes, same with my nose runs sometimes too. my hair has also grown back, yay..... i too have a dent behind my ear(lack of bone)??? and it's still tender.
My smile is not the same, small droop on left side, hoping it will someday be more back to normal.\kelly
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Hi, Denise ~
It's good to see you post - and with positive news as well as photos! I'm certainly no expert but your hair looks fine to me. :) I also have an indentation near the base of my skull where the incision was made but even with my relatively short (mans) haircut, it isn't noticeable. I can tell you're doing great and I can also assure you, as a 3-year post-op AN surgery patient , it just gets better. Although I felt good and was quite functional at 6 months out, I'm much better, today. My balance improved with use (I walked a lot and challenged myself) and what few issues did not totally resolve over time, I simply adjusted to, i.e. a small 'numb spot' on the side of my tongue, very slight, occasional 'dry eye' and of course SSD. Your smile appears to be symmetrical and I seriously doubt anyone would know from looking at you in that 'V for victory' photo, that you underwent brain surgery six months ago. Well done, Denise! :)
Jim
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Denise, you look great! So glad to see things going well for you! I have a long way to go before I have my first post-op MRI (March 2010).
Love the great attitude, keep it up!
Ernie
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was just looking for this thread!
Denise!!!! Look at you!!!!!!! Great haircut, btw! (the hairdresser in me had to note that!) Can't tell a thing and OMG! You look fabulous! Congrats!!!!!!!!!
Continued wellness wishes to you! You know it!
xo
Phyl