new and old, checking in

[krashleen]

Hi there..been so long since I was here, and now re-upping for the system..want to use this thread to say (if we have to)who we are, and that we are back?

I'm still me, but haven't found my avatar with the girl yet. So I will be looking.

Marilyn? Are you around? I sent you an email a month or so back.

Liz?? I see you are already here.

Roz too..

A few more that were fairly frequent posters I would love to see back here and see how they are doing.

[LIZARD]

Yo, Krash-baby!!! :D How you be??

I'm LIZARD, mom born with hydrocephalus comin' up on 40 :eek: years. I am also mom to Caren, 15, mostly typical :rolleyes:, and Drew, 12, dx'ed with autism at 2 1/2 and a 13 mm ACM I at 5 1/2. So far, minimal (if any) classic symptoms, no decompression. We watch and wait...



LIZARD :)

[maridane]

To be missed and to miss is really a wonderful thing. Means to me anyway that I can feel, something, anything.

Kathy, didn't get your email, curious as to where it went! So good to be back even though time here will be very limited. I am as well as can be expected, praying that all is well with you and wondering how you are feeling and how recovery is going. Please do tell...

Liz, wonderful to see you back as well, have missed everyone so much.

Roz, good to see you here too.....

Ok, got to run, as I said time will be very limited but will be back tomorrow to post and check on folks......

God Bless you all and God BLess J.L. Thank you John, for everything you do.
Love to all, Marilyn

[Hooked_on_BTC]

Glad BT is back. Thanks sooooo much John Lester for all your hard work and dedication. Was mostly a lurker, posted a couple of times under a different name. I've learned so much from you guys and appreciate it so very much. Thanks for all your sharing/caring and for the information that you provide. I would've been lost without it.

[razzle51]

Hi Marilyn good to see you back on the boards . Hope all is well with you. Go Hogs!!!!

[krashleen]

There are a few of us that just won't go away eh??

Lizzy baby! nice to "see" you..how are you and the kids? Recovery is slow, as to be expected. Had my five(instead of six month)month check back in NY and things look pretty good. Some scar tissue build up, and Dr Pinkshasova(sp)thought it might be "pooling" of fluid, but then Dr B looked and said he thought it was scar tissue.

Maridane..I will look back in my emails and see where I sent it to..I dunno right now. How are you? I have been thinking of you and Tonya and wondering how things are going, whether you are going to get to TCI next year?? Whats up? You know I always wish you the best.

Roz, you and I still are on ASAP so I think I am up to speed with ya. I missed this place.
Such knowledgable people...I do miss the info that we had posted here. Dang.

[Keigwyn]

Hi-
I'm completely brand-new, I followed a link from the ASAP message board posted by razzle51. I've got ACM1 w/ syringo, decompressed in 2004, and I'm fighting to have better care since my symptoms are coming back like gangbusters. :rolleyes:

I've avoided all chiari-related info for so long because I have Post Traumatic Stress Disorder associated with medical scenarios and pain which makes me avoid and dissociate from anything that reminds me of pain (which is hard when you are in pain!), but I'm working on it and working hard to educated myself better and reach out to others and actually TALK about what is going on with me. :)

It looks like this community was once thriving, and I hope it comes back again!

Cheers-
Keigwyn

[maridane]

I don't know if I had a chance to tell you that my computer crashed and burned badly. Lost everything I had on it. I have worried about you incessantly about your recouperation and how it was going. I knew it would be slow, but have prayed that things would be ok with you. I am so glad you got on back to NY and at least you know that scar tissue is an issue. Shoot Tonya can't find a neuro doc to even take a look at her. Even though one of the main ones in Salt Lake said he would do her follow up care, once she got back to Utah that went to **** in a handbasket.

Kathy to be honest with you I am not doing well at all. Going down hill and fast. Scared to death and just trying to hold it together, it is the best that I can do right now. I am going to send you a private message with my email addy just in case it isn't the same one you used. Had to transfer a lot of my regular email stuff like the wacma group to the new email addy as netscape is being a butt and not letting me in to my old email on that browser. Don't know what the heck is going on... but oh well.... Hang in there hon, it is all that we can do.... Missing you terribly.
Love Marilyn

[LIZARD]

Kathy to be honest with you I am not doing well at all. Going down hill and fast. Scared to death and just trying to hold it together, it is the best that I can do right now.

:( :( :( Fill me in, hon'.


((((((((((((((((((((((((((HUGS)))))))))))))))))))) ))))))))))),

LIZARD :(

[Brainab]

:D Guys... it is good to be back here at BT. Thank you John for your diligence! That "other" site, although very helpful by most posters, and I am sure well intentioned by the creators and upkeepers was giving me a bad vibe, and really made me miss this place. WELCOME BACK TO ALL OF US!

[Galadriel]

...private messages!

[krashleen]

Aw Marilyn...

here's a BIG hug!
((((marilyn)))))

I hope you can get things together and get your surgery done, I pray that some good comes your way. You deserve it..is Tonya still having problems? I am sorry to hear that too.

We had the same thing with comcast, wouldn't let me into my own emails, and it was disastrous! I cannot remember which addy I used, but I have rec'd both PM's and will PM you back.

Miss you! Glad your here!

[Nikki_Poohs Mom]

Once upon a time...I was a fairly regular poster here. although, I haven't posted much in awhile, I still managed to read when I could. Very happy that BT is back in action. I sure have missed it!

Marilyn, Are you still waiting for surgery? I'm so sorry to hear that things are still not looking up for you. :( How is your daughter doing after her surgery? I pray there is a resolution very soon to end your suffering.

We are awaiting the arrival of our precious "Lacie Marie" Nikki's baby girl that is due soon!

http://bd.lilypie.com/KnPum4/.png

[sweettartgirl23]

YAY! I'm glad to have at least heard from everyone...even if it is that you're not doing so well. I've kept everyone here from BT in my prayers since the boards been down so it's good to get an update. I've been on that other site so have kept in contact with a few of you, but for others i'm 7 1/2 months into my fusion/decompression recovery and TCI was very impressed with my range of motion at my 6 month visit. Unfortunatley, I'm now stuck in the middle with hte new tethered cord issues and Dr.B says i definatley have it as all tests were positive. BUT, WONDERFUL news is i'm back in school full time as a senior! yay! so please forgive me if i don't post as much :D
I'll keep you all in my prayers! Now, back to writing an epic...yes I did say an epic...ahh the joys of high school :rolleyes:
Laura

[krashleen]

welcome back Laura...yes its good to be back here.

I hope I can participate in your senior project. That would be cool!

Glad to see the folks here!

[dcook60]

this is dianne, in spokane, WA (the vast wasteland for help....) i'm thrilled that braintalk is back, since i've been reading it ever since i got on the internet at the public library system here, 9 years ago.......when it was connected with harvard and was called a couple of other things. i've missed it.

krash, howdy do. i'm sorry your recovery isn't as fast as you wanted it. i'm the impatient sort, too, and i imagine ALL OF US want better results from surgery than we sometimes get. the body has been through a lot! i had my throat cut a year ago, (discectomy and fusion of C3-4) and i was mighty impatient.

dianne

[maridane]

NINA!!!!!!!!!!! Where have you been my friend. The last I heard was a post or two that I read on the hydro forum that our little Nikki was married and then pregnant and then having all these difficulties and I was worried sick that she may lose the baby.... I am so thankful that she is still hanging in there. Did she find a good high risk baby doc?

Please when you get the chance, fill me in... I have missed you so much.


Lizard, have sent you a PM trying to fill you in on all that seems to be screwing up, lol.....

Laura, how wonderful to hear that you are doing as well as you are. Tethered cord eh? Seems like if it isn't one thing it is another... Am praying that all goes well and isn't Dr. B. just the sweetest? Laura I am so proud of you and all that you have accomplished. A senior now, wow that is just awesome. You go girl.

Dianne, good to hear from you as well.... Was wondering where you had gotten off to. I had fusion on C5, C6 for cervical spondylosis, as well as having the right front scalene muscle removed due to atrophy. I must say that I couldn't get over what a breeze that surgery was but about 6 months after I started having all this horrible pain in the right scapula that I ended up having to have numerous trigger point injections for. Not only was the pain really bad but that entire area was freezing up... The trigger point injections did the trick though. They have lasted for some time now but I can tell that I am going to have to go back for more sometime in the near future.

Brainab, I agree with you 100 % that it is so good to be back and also, I did go to that other site you speak of and visited one time. I did not feel comfortable at all. It seemed to me that instead of trying to help people all they wanted to do there was bash J.L.; this site, the mods, the posters and whatever else they could come up with to whine about. I felt very uneasy there and decided that I didn't care to go back. Biding my time until J.L. could get braintalk back up was well worth the wait other than listening to those who felt John Lester seemed to owe them something. Seems to me those were the ones who did the most griping on that other site. This may be rude of me but I feel like if they liked the way it was over at the other site so much then maybe they should have stayed there and not bothered coming back here at all. Especially when they have nothing kind, decent or good to say and offer no help to anyone. But enough about that, I have had my say and now that subject will never be brought up again. Not by me anyway. Good to be back, good to have everyone back so far and can't wait to see more regulars heading back this way soon...... God Bless...


The update on Tonya is that she is feeling like the elephants are not sitting on her shoulders anymore and that the headaches are not quite as bad as they were before but she is still not able to return to work and time on the computer is very limited. She is struggling but she is a fighter and a survivor just like her mother.... lol...... She should be hearing something on her disability hearing soon. Praying that all goes well......

Ok, must go for now, can't hold my eyes open any longer and the desire to lay down is so strong that I cannot fight it anymore.... God Bless to all and thank you for asking after my Tonya.. My love to everyone.
Marilyn

((((((((((GROUP HUG))))))))))

[LIZARD]

The update on Tonya is that she is feeling like the elephants are not sitting on her shoulders anymore and that the headaches are not quite as bad as they were before but she is still not able to return to work and time on the computer is very limited. She is struggling but she is a fighter and a survivor just like her mother.... lol...... She should be hearing something on her disability hearing soon. Praying that all goes well......

Dang. :( That was the one thing I hadn't asked you in my reply, and I was hoping to get better news. I'm sorry. :( Please give her a careful hug and tell her I'm thinkin' of her.

((((((((((((((((((((HUGS)))))))))))))))))))))),

LIZARD :)

[krashleen]

I am also applying for disability, as time goes on, things keep on the same track. I am awaiting paperwork from TCI from the ASAP site..to hopefully "streamline" things.

Howdy Diane! Its good to see you..I so totally understand your impatience too. My PT says that just fusion alone can take over a year and up to two years.

and to think NL's and NSG's don't think our symptoms can cause us this much pain, and have so many symptoms in common.

[GinaMarie]

Howdy all, :)
I've checked in a few times but guess I havent posted yet.. lol I cant remember. :rolleyes: . My two younger boys have Chiari. My 11 yr old more than my 9 yr old. I was suppose to get a copy of thier MRI's when they saw thier neurosurgeon last month. He told me to ask the front desk but with my memory problems I forgot :rolleyes: :( . NOW to get them I might have to wait til I drive all the way to Sacramento again and request them... UNLESS I try to email thier neurosurgeon and see if he will pull them for me and send them... I HOPE.. Im seeing a new neuro (3rd one) on the 4th and Im going to ask him if I possibly have chiari. It would explain a lot of my headaches, bladder/bowel problems, and MULTIPLE other stuff going on. My last neuro had to leave the country til Feb and he doesnt take my state Medi-cal anyway.

Its good to see familiar faces and new ones also.

Well Im falling asleep and feeling another headache trying to come on.
Talk to you all soon.
HUGS
Gina Marie