Recent Posts

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91
Physicians / Re: Seeking advice for finding surgical teams
« Last post by donjehle on April 14, 2024, 06:50:44 pm »
I had my second MRI and initial consultation at Emory.  They have a good reputation.  I sought out a second opinion at the Mayo Clinic as I highly respect the acoustic neuroma team they have there.  The Mayo Clinic offers a video consultation at no charge -- so it does not hurt to touch base with them.  In my case, the doctors at Mayo completely agreed with what the doctor at Emory told me.  And that gave me a lot of comfort knowing everyone was in harmony.

Best wishes for your daughter as she continues along this journey!
Don
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Inquiries / Re: Should I be concerned
« Last post by donjehle on April 14, 2024, 06:44:12 pm »
Well, it's about time!  But that news was worth waiting for!  Congratulations!
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Hello my friend, I am aware this is a scary time for you. Hopefully you have had your surgery by now and everything is going as well as expected. That being said I know this is a whole new world for you and much adjusting to your new life and normal if indeed it has resulted in the right sided facial paralysis as expected. I also had a large/aggressive AN that resulted in right sided facial paralysis and right sided deafness. Long story short, in the end I had to have had to have: 1 original surgery, followed by a 2nd because of aggressive regrowth, followed by 28 rounds of max dose radiation, unfortunately that did not do it as what was originally thought to be the normal “swelling process/dying” of remaining tumor tissue ended up being regrown once again requiring a 3rd surgery. Although this is an extremely rare event and I do wish you all the best, I completely understand there will be new normals for you. Some things I have learned that may be helpful to you knowing sooner than I did was 1- eye care: lacrilube type stuff, punctal plugs, eye weight ect all unfortunately did not work for me personally but what is called a “ mini scleral lense” was a game changer. In combination with other things in regards to eye care but the mini scleral was an important one! If there is anything I could possibly answer for you or any issues I could help with I am more than happy to help if I can. Just an fyi, this journey started in 2014, it has been 10 yrs, I am an LPN by trade and have gotten myself back to work part time(because of chouce options at my particular hospital) with minor adjustments, a little bit more difficulty than I realized but not too an extent of being undoable👍🏻I am also from Canada, this site just seemed to have more information options than the Canadian version. All the best to you my friend, you’ve got this 🙌
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Eye Issues / Re: LacriLube Eye Ointment
« Last post by Jill Marie on April 12, 2024, 09:22:14 pm »
Hi! I know exactly how you are feeling, I use ointment 24/7 also and have since 1992.  I'm also left side deaf, dry eye and some paralysis.  I have experienced the no more eye ointment issues as well, discontinued, changed ingredients (new ones burn eye), increased price a lot and my favorite, temporarily out of stock while we change the design on the tube!  I have a HUGE stock of it now, to avoid future panic.  I use Bausch and Lomb Soothe PM.  I also wear an Acuvue Oasys w/Hydraluxe daily lens. It's a soft lens that I put in first thing in the morning and wear all day.  The lens cost just over $1.00 a day. It's worth it, before I got the lens I wanted my eye removed because I couldn't stand the pain anymore despite using 3 to 4 tubes of ointment a day.  I hope this helps!  Jill :)
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Eye Issues / Re: Any other cycclists out there???
« Last post by annwn on April 10, 2024, 07:28:03 pm »
I bikejor, so preferably most of my biking is done in cold temps, the colder the better. I wear ski goggles now all the time when bikejoring to keep my eyes moist and unfrozen.
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Inquiries / Re: Should I be concerned
« Last post by DanFouratt on April 10, 2024, 03:05:24 pm »
GREAT NEWS!
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Pre-Treatment Options / Re: Newbie without diagnosis...yet
« Last post by DanFouratt on April 10, 2024, 03:04:28 pm »
I cannot speak about your issues.  For me the MRI is done, hour at most, with contrast.  I then get in the car and drive 5 miles down to road to the doctor's office and we review them.  I am not affected at all from the MRI.
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Pre-Treatment Options / Re: Newbie without diagnosis...yet
« Last post by Angela330 on April 10, 2024, 12:04:00 pm »
 I just had my 7th MRI.  They last about an hour without & with contrast. They will put an IV in your arm.  First part will be without contrast & 1/2 way thru they will pull you out & put the contrast in your IV.   They will put headphone on & let you listen to music.  The machine will bang around a lot.  After it's done they will remove the IV & you are free to go.  I usually have the MRI that same day as I see my Dr.  I think the hardest part is the not knowing the results  I wish you the best.  I understand how scary all this can be. 
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Pre-Treatment Options / Re: Newbie without diagnosis...yet
« Last post by Greece Lover on April 10, 2024, 11:05:49 am »
They put the contrast dye into your arm, sort of like drawing blood. 
there's no recovery from the MRI. you're just done and leave. (at least that was my experience.)
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Inquiries / Re: Should I be concerned
« Last post by Laura B on April 10, 2024, 11:03:58 am »
Just wanted to provide an update before I leave.

Got results of my MRI today seven months after my actual MRI and all completely clear. :)
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