ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: LADavid on August 03, 2008, 10:49:29 am
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Looks to be an active week.
First up on Tuesday, Jackie (from Beaverton -- home of Nike -- near Portland) gets the results of her MRI and audiology tests. Jackie here's hoping that there is no more growth and the the thing has actually been shrinking.
Also on Tuesday, Windy heads to my old hometown of Pittsburgh for a GK at UMPC. Windy, best wishes for a very successful procedure. And while you are there, enjoy Pittsburgh. Since you'll be so close by, make sure to visit the Carnegie Museum.
And finally for Tuesday, it looks like I have something to do. I'm heading down the road to St Vincents for an MRI because my surgeon said something wasn't right. Hmmm.
Then on Wednesday, Sue L is having an AN surgery in Lebanon NH. Best wishes and much success Sue.
And finally, on Saturday, Joef is celebrating the third anniversary of his AN surgery. Way to go Joef!!!
Hopefully I didn't miss anyone. But as a reminder to all of you with upcoming surgeries, procedures, tests, anniversaries, birthdays, achievements, new puppies and all the other exciting AN things, please note them on the calendar (link below on my signature line) so we can all be there for you. It's a pretty simple process. Even as a techno-challenged type, I actually managed it.
That's it for this week. But just wanted to say, looking back on July, there were a lot of great successes. It really has been a blessing for all of us and for all of you who are on-deck, hopefully an inspiration.
Have a great week everyone.
David
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I believe Jackie is in for more diagnosis on her situation; she has a small AN on one side, and a small meningioma on the other side, according to the last round. Here is hoping that the situation becomes clearer with this new MRI, and that good options are available, should treatment be indicated.
Sue L, I am sorry to say that I don't have a pair of bunny slippers for you, you will have to settle for a virtual pair. Just pretend your socks have ears! Best wishes for a good surgery and a smooth recovery.
Windy, have a good zap at Pittsburgh, you are with one of the best there. Hoping for a great outcome for you.
Nancy L (NL), a friend of Kathleen, is also having surgery this week, I think on Wed., but it hasn't been posted on the calendar. Best wishes for a duplicate of Kathleen's successful surgery.
I agree, David, July was a very good month. Hopefully August will follow suit.
Steve
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Hello David,
Thank-you for your uplifting well wishes, and may I say that I hope your news is good news too! My results will hopefully determine if there has been any growth of the first AN I was diagnosed with, and determine whether or not I have a second AN or if it is a Meningioma (also a slow growing non-cancerous tumor) and exactly where it is located. The experts disagree, for now! I'll keep you all posted! May all of you continue your healing and I wish you all many blessings!
Jackie
Oh, David, obviously you've been to my part of the world! It's pretty nice here in the Pacific Northwest, huh!!!
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Jackie
I used to go to Portland frequently on business back in the 80's. I love it there. I even have a Jake's cookbook that I occasionally pull off the shelf and whip up a dinner to remind me of one of my favorite restaurants. Of course there are a lot of great restaurants there. And of course in the spring, you have one of the most beautiful airports in the country -- at least when I was last there in about 1990. And of course, Portland reminds me a lot of my hometown, Pittsburgh because of the rivers and hills.
Best wishes for this week.
David
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Jackie and David -
after reading your posts, you've got me thinking I should book a trip to Portland soon - it sounds like a lovely place.
Best wishes to both of you - I hope your MRIs shed some light on your "situations".
Sue L and Nancy L best wishes for smooth surgeries and fast, uneventful recoveries, and Windy good luck with the GK. Keep in mind that everyone's different and everyone's AN journey is different. We did have some excellent treatment results in July, but focus on your own recoveries, not on trying to live up to someone else's.
Joef, congratulations on your 3rd anniversary! and thanks once again for your encouragement and help with all my BAHA questions prior to my implant surgery.
Almost forgot - wonderfully worded post, David. You sure have a way with words ;)
Jan
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Thank you to everyone for your well wishes. Since I've been getting all of my resources on this forum for 1 1/2 years I'm very confident that I will come through with flying colors. If not, with time, I will be OK. It was a long 1 1/2 years of worrying, but now it's time.
Steve, no bunny slippers.......shame on you....I'm going to cry!! :(
My daughter from Arizona is arriving tomorrow and staying for 2 weeks. My daughter from New York will meet us Tuesday night for dinner and we're going to party, at least till midnight, that's when I have to be good. Wednesday at 6am I report to the hospital. My surgery should be around 8:30am. Is there an email or something that my daughter can send to update you on my surgeryl. I have made her a group contact for friends and family but don't know what to give her so all of you can receive updates. Please let me know. I do have Katie Bonner's email but she's leaving for vacation...
To the rest of you who are having test etc.....good luck and we shall all conquer this...... :)
SueL/NH
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Sue L -
I'd love to say you can email me, but I'll be out of town also and I'd hate to have our fellow forumites waiting on me.
Any volunteers? David? Lori? Debbi? Kaybo?
Jan
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Jan and Katie out of town??? What are you guys doing? Taking a vacation? Debbi is the go-to for follow-up. Debbi, you're not going out of town, are you? Debbi?
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Jan and Steve,
Thanks so much for the good wishes!
David,
It took me a while, but now it's official - I'm on the calendar!
Sue L,
I'm so glad your daughters will be coming in to town to stay with you - and to party with you first! I'm not having surgery until the afternoon, so I will still be "awake" at 8:30 am and will be sending lots of positive thoughts your way!
Thanks to everyone again for all the support,
Nancy L.
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Hey Sue! :-* Been ages since we spoke. I'm assuming you'll be at Dartmouth/Hitchcock? Wellness wishes to you and you KNOW I'll be cheering you on!!!!
As for everyone else this week.... my continued wishes for good health... dead head boogers... and onward and upward! Hang tough!
Phyl
Thank you to everyone for your well wishes. Since I've been getting all of my resources on this forum for 1 1/2 years I'm very confident that I will come through with flying colors. If not, with time, I will be OK. It was a long 1 1/2 years of worrying, but now it's time.
Steve, no bunny slippers.......shame on you....I'm going to cry!! :(
My daughter from Arizona is arriving tomorrow and staying for 2 weeks. My daughter from New York will meet us Tuesday night for dinner and we're going to party, at least till midnight, that's when I have to be good. Wednesday at 6am I report to the hospital. My surgery should be around 8:30am. Is there an email or something that my daughter can send to update you on my surgeryl. I have made her a group contact for friends and family but don't know what to give her so all of you can receive updates. Please let me know. I do have Katie Bonner's email but she's leaving for vacation...
To the rest of you who are having test etc.....good luck and we shall all conquer this...... :)
SueL/NH
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Nancy -
I'm glad you figured out the AN Calendar and "booked" you surgery. Now you are official ;)
David -
I think Press Secretary Debbi is an excellent choice. Maybe one of us should point out to her that we are nominating her?
I am going on a vacation of sorts - I'm working at our annual convention. It's in Minnesota this year, and although it's a lot of work, it also gives me time to spend with grownups and I get a hotel room all to myself. No one calls me mom - at least if I have my cell phone turned off :D
Jan
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Hi All-
Press Secretary to the AN Stars checking in! Sue, I'll send you a PM with my email address so you can have your daughter put me on her list and I'll update everyone here on the forum.
Jackie and David - sending you tons of good thoughts for your MRIs this week. And, David, an extra hug coming your way!
Windy - good luck this week with your GK. Can we expect pictures???
Joef - happy anniversary!!
We've had a great couple of weeks of AN treatment results, which will hopefully continue, unabated, this week...
Debbi
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Good Luck to everyone - been out of town so this is a little late...
David~
I have you in my thoughts & prayers for Wednesday - sorry you are having to go through this - I am sure the waiting is the worst part.
K
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Just heard that Nancy L will be having a Retro through House this week. Nancy's a local LAer 8) -- not too far from me. She's having her surgery on Wednesday. Looks like Kathleen and Nancy and I are all converging on House at the same time. Best wishes Nancy for a very successful surgery. Will someone keep us posted or do I need to come down there on Wednesday to get the information first-hand? And if you're having your pre-surgery physical tomorrow -- I'll be in Dr Stefan's office at 1:00.
By the way, thank you all for the well-wishes on tomorrows MRI. I had a pretty wobbly walk this morning and I'm axious to get to the bottom of it. And Kay, the waiting isn't really the hardest part for me -- it's getting shoved into the Cylinder of Doom and having my brain boomed, banged, and pinged that I don't like :-\
David
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David~
Could you please just think of me and how I actually LIKE MRI's because it is the few "peaceful" minutes that I have ALL to myself. All the banging is actually rhythmic...I'll let you do this one long distance for me because I sure could use a little break...please????
K
PS - Good luck TOMORROW, not Wednesday!
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David-
Not to cast to dark a pall on the MRI - but I have a friend from South America who believes that the MRI "sucks the spirits" from your body... And, that, my friends, is why God allowed someone to invent Valium!!! It is actually a demon-spirit-sucking shield...
David, sending you LOTS of good wishes tomorrow!!!
Debbi
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You like MRIs, Kay :o? I guess that is a different perspective. I have all the peace I want (at least when the neighbors are quiet). And maybe I should look into this valium thing. I was thinking a shot of brandy would do the trick. But I'm guessing St Vincents radiology department would frown on that.
But now I am really concerned, a spirit sucking tube? Thanks for the warning Debbie. I'll mention that to the radiologist and see what he can do about it.
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OMG, a spirit-sucking tube :o I hope this comment didn't freak you out David.
And, I'd vote for brandy over valium any time. Or maybe rum would be a little more appropriate in light of the whole "pirate thing" ;)
Best of luck tomorrow. I'll be thinking about you.
Jan
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Well here I am at the Norwich Inn in Vermont which is just 5 mi from the Darthmouth-Hitchcock Medical Center in Lebanon, NH where I will have my surgery at 6am in the morning. My daughter from AZ is here with me and were checking our email etc... while waiting for my daughter from NY to arrive.
I'm very calm, and I know it's because I know all my information from all of you.......I will be coming out of this with flying colors. We are going to have a nice dinner together here at the Inn. Maybe kill that bottle of wine!!!! ;)
Steve will be updating you as soon as my daughter gets the email out to everyone. Take care!
Nancy, good luck to you, I will be praying for you while I'm under, I'll have plenty of time........
SueL/NH
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Good Luck Sue - you are in my thoughts and prayers! Peace to you and your family!
K
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Sue L. -
I wish you a totally successful surgery and a flawless recovery. My prayers go with you..
Jim
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Hi Everyone,
Results are in and I am still trying to figure out what's going on! My MRI shows virtually very minute difference in the growth of the An on the right side, and the 5MM mass is not in the IAC, hasn't changed either, which is all the good news but now they have found an Anuerysm in the middle of my brain. So now I am back to research, and quite frankly don't know what to do. I am to monitor all of it, have no symptoms of the Aneuysm, as of yet. So that's it for now, good news followed by bad news! So now I think my tagline needs to be Watch and wait and what's next???? I really am tired of the surprises!!!
Jackie
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Jackie!
Oh my goodness - you are definitely in my thoughts and prayers.
K
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David,
How was your appt with Dr.Stephan today?
I take it your spirits are still intact afte the MRI. Keeping fingers crossed and wondering what the heck they mean by something isn't right.
Jackie,
I don't know much about aneurysms. Is that something they just wait and watch?
It sounds like the AN isn't changing much. Did you know that you can get a written copy of the radiologists report in the medical records department of the hospital? I always get a copy for my records.
Kate
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Jackie and David -
after reading your posts, you've got me thinking I should book a trip to Portland soon - it sounds like a lovely place.
Jan,
I've not been to Portland yet so I can't add to that one, but if you do a Pacific NW trip include Vancouver (Canada) and Seattle.
Kate
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Kate
I totally concur. Seattle and Vancouver are fantastic. It's funny though, when I think of trips to the Northwest I think of mist and the best salmon I've ever eaten. Just like I think of pizza when I think of Chicago. After 25 years of travelling, it's amazing what sticks with you.
And everybody who wanted to know
The MRI tube of gloom was OK. Although I did try to understand how Kay found it an escape. I do think when you do it the second time, it isn't as bad cuz you know what to expect. So I did the spirit sucking thing and I hustled across the street to see Dr Stefan. I had my films for Dr Slattery with me and Dr Stefan took a look at them and saw nothing. Dr Slattery will be the final judge on this one but it seems like there is nothing physically wrong with my brain, I'm just crazy. Of course there is my daughter's diagnosis -- my brain just didn't like getting messed with and didn't take kindly to it -- so it's getting back at me and went into pout mode.
But I had the greatest afternoon in a long time. I went back across the street to meet Kathleen and her husband. She looks fantastic. Not long after that, Nancy (NL) joined us. She had a pre-op meeting with Dr Stefan. Her Retro is tomorrow. Wow, it was very cool. After reading about how all you got together in the Northeast and Texas, we west-coasters bonded. (Lainie, you're in on the next get together -- maybe when Nancy is freed from captivity). It was the first time I met a real ANer in person. So now I'm rethinking my ethnic based theory. I'm now thinking that ANs are caused by the really beautiful people gene that comes from the heart. Nancy got some pictures. I'm hoping that she posts them as a postie. Wishing you the best tomorrow, Nancy. Wow, what a day!
David
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Kate -
thanks for the travel tip - I'm dying to see Seattle also. While I know I'll be sad when the kids go off to college - still about 6 years away - I'm looking forward to some "me" time where I can travel ;D
David -
sounds like you've got your own little support group going. Good for you - and all the others who joined you.
Glad the spirit sucking tube adventure is over, but I'm puzzled by the results. With the issues you are having, it seems logical that there should be something behind them. Maybe your daughter is right about the pout mode.
Jackie -
The good news is definitely good, but I'm sorry you had bad news also. I'm not sure what to say other than hang in there. Like Kate, I don't know much about aneurysms. Is monitoring it your only option? And how does one monitor an aneurysm if one doesn't have any symptoms?
Sue -
your calmness and your wonderful positive attitude will be great assets tomorrow and in the days and weeks to come.
Best wishes for a swift surgery and uneventful recovery. I'll be anxiously awaiting Steve's post telling us you are in postie land :)
Jan
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Hi Jackie, Good to hear about no change in the tumors but of course scary to hear of the aneurysm. That may be a wait and watch also but will depend on the size and its location also. Sometimes surgery is done and the artery/vein is clipped off so that it does not burst and cause bleeding. It is a major in the brain surgery but can be fine past recovery.
I had a sister in law just a year before my first AN surgery did have one burst and had to have immediate surgery. Her father had had one also but am not sure how he did as was before we even knew her. She did recover well but took some time. She had no idea that she even had one and think it was fairly big. Her daughter has since had an MRI to see if she has one and does not.
I know it is not fun to have to be concerned about one more thing and know we get more and more MRI's.
Good luck with this. Cheryl R
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David:
I'm pleased to learn that you survived the dreaded MRI spirit-sucker experience . If it's any consolation, I've undergone eight MRI scans in 26 months and my spirit is still intact. ;) I'm even more pleased to learn that the MRI showed no real problem. Whew! You had us worried there, for awhile.
It was great that you were able to meet Kathleen and her husband as well as Nancy L. Having attended one of Phyl's New England-area brunches, meeting other ANers as well as enjoying good food and conversation in the bargain, I can understand your positive impressions.
Thanks for sharing your great day with us. :)
Jim
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David- So glad you got to meet Kathleen and Nancy L! I really enjoyed meeting some of my fellow-ANers face to face reacently and am commited to doing it again, and again, and again. You're right - the common denominator must be that we are all really great people!
Very good news about your MRI!
Jackie - I hope you'll find out more about this aneurysm thing - I don't know much about them either, except that they aren't good. Keeping you in my prayers...
Debbi
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David, glad your MRI results were positive, or were they negative? At any rate, good news that there appears to be nothing there that shouldn't be. Know it was great to meet some fellow AN'ers. I had such a great time meeting Phyl (& hubbie) and Bruce when she was down here. Glad you were able to see Kathleen and report that she looked good - I was wondering about her today as I hadn't seen a recent update.
Jackie, sure hope they can give you an answer on your situation sooner rather than later. You know we will be thinking of you. Keep us posted.
Sure I've missed something/someone??? I am really having a hard time keeping up w/ everything and everyone around here lately. Think I need to start some sort of flow chart or log book or family tree...
Cindy
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Hi Cheryl R, Debbie, Jan and Gang,
You might say I was really bumbed about finding out about the Aneurysm. Now I have three things in my brain! What ever happened to 2 is company 3 is a crowd?? Well, I am in the process of researching the Aneurysm, it is 7MM in the middle of my head. Not sure what the course of action is, the scary thing is, that the course of action could casue the problem that they would be trying to alleviate, ie, stroke, bleeding, death. You know at 61(Birthday is next monday) I am not having any fun! I so admire all of you uplifting positive wonderful people, and used to be just like you! I really want o be again, if all of these downers would quit getting heaped on me!
I remember my very first post to this forum was"When does the crying stop?" I am still waitng?? First an Acoustic neuroma, then a meningioma now an aneurysm and in the course of a year and a half! My cup runneth over!!! During all of this I lost my Mother, who was my best girlfriend! So like all of you I am ready for the good times to roll! Sorry for the venting!!! I know alot of you can relate!
Jackie
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Jackie -
IMO with all the things you've been through, if all you are saying is that you're "bummed", your attitude is very positive and also commendable (Jim Scott word) ;)
Keep the faith and hang in there. I'm confident there is a light at the end of your tunnel.
Jan
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Wow, Jackie. I am really sorry to hear about all that is going on -- and on top of everything -- losing your mom. I can only echo what Jan said, with your positive attitude I would never have guessed that you were dealing with all that. My thoughts and prayers are with you. And of course, an early happy birthday -- you're out a head of me by 7 months.
David
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Jackie - please let us know what your course of action will be, if any. You are in my prayers. I have thought to myself lately that at least we all probably won't be surprised by any "brain things" with all the MRIs we'll be getting the rest of our lives. Maybe without the MRI, you might not have known about it until it was a huge problem....it is probably better to know about it now, if that makes you feel any better.
David, glad you're in the clear at this point, and also glad you've retained your soul. Good stuff.
Also, you asked how I'm doing...mostly good. Balance and all the vestibular stuff is fine - I only notice abnormalities rarely. I actually went on a spinning ride on Sunday, and felt fine (it was a pretty slow, "wimpy" ride, but still!) My biggest problem is still the lack of tears in my AN eye, which is a pain in the, well, eye! My face is s..l..o..w..l..y coming back, I think. I'm managing a Mona Lisa smile, but that's about it. As long as I don't talk, or eat, or smile, I look relatively normal.
I'll try to keep track of everyone, but I know I'll miss some somewhere..
Tammy
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Hey Tammy
I do know -- if I don't talk or eat or smile, I look relatively normal. As far as the eye is concerned, my eye started to get better about three or four months. I still use Systane occasioanlly but it is nothing like that gooped up mess last winter. BTW, something that helped me -- a suggestion from my opthomalogist -- take a very thin piece of clear tape and run it along your lower eye-lid then pull it up in the outside corner pulling the lower lid closer to the top. It helped me. And I seriously doubt that I could handle even a wimpy slow spinning ride even at this point -- so it sounds like your on the recovery trail. Keep it up!
David
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Hey Tammy
if I don't talk or eat or smile, I look relatively normal.
If I don't talk or eat or smile, I look pretty grumpy. ;)
Steve
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Jackie:
I was so sorry to learn of your just-discovered brain aneurysm. Your forbearance and emotional stability has surely been tested recently. The fact that you're not mired in bitterness or self-pity is a testament to your inherent strength of character. I'm sure you would rather not have these problems (duh!) and the attendant stress they bring but the fact that you've come through the AN and the meningioma episodes without giving in to despair is admirable and bodes well for your emotional stability as you deal with the aneurysm.
Jackie, if anyone has earned the right to vent, its you. Don't apologize. Many folks are praying for you. You're not alone. I hope and pray that soon, the 'crying will stop' and you'll see better days.
Jim
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Now I have three things in my brain!
Hi Jackie,
My sympathies to a fellow Portland ANA member. Well at least they are all small things. Now that you have a balanced set, your brain's feng shui should be in good harmony.
I really have no idea of what the aneurysm has in store for you, or if 7mm is even considered small or not. It sounds like it will probably be the first thing to get addressed. Know that we are all here to support you and help in any way we can.
Steve
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Hello Jim and Steve,
Thank-you for the kind words. I really wish I was of strong character, but I am not really! I guess I put up a good front at times! My mission is to find out all I can about an aneurysm and whether or not Dr.'s Brackmann and Dr. Chang will assess my total situation now that we have 3 different growths taking place. Wow, I was really bumbed about the first two, but this aneurysm is really scary. Sure doesn't make me anxious to have the next MRI in 6 months because i just can't take anymore surprises! Modern technology has gotten too good!
Wishing all of the surgical patients speedy recoveries, and I'll keep you all in my prayers!!! Thanks to all of you for your continued and much appreciated support!!
Jackie
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Jackie,
Take care of yourself and know there are lots of us on this forum praying for you.
Anne Marie
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Jackie, I'm so sorry you are having to go through this. I'm wishing you all good things, hang in there, your journey is just longer but you'll still get there.
Marci
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I got the results of my MRI back. It was clean. So I guess the only logical explanation for the wonky-head-disorietation-balance mess I've been dealing with is that my brain didn't like being messed with and is throwing a tantrum. Either that or I am being poisoned by the AN witch. I can think of no other reason.
David
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Glad to hear your clear, David...tantrum explanation sounds reasonable to me. Hope it calms itself down soon.
Jackie, how are you doing?