Roll Call

[Braindrain]

Hi, everybody! Now that Braintalk is back up, let's see who else is here!:D

[Shown]

I am here and glad to be back

Shown

[Braindrain]

Hi, Shown! Good to see you!:)

[Shown]

Nice to have the forums back! I know Mr. Lester has worked really hard to get things back up and going. Computers are great when they are working right but sure are a pain when they go down, never a quick fix or unfrustrating one. But hey he did it and we are back.

Shown

[Spiritgal]

Hi guys! Nice to see you all again! Hurrah, our little home is back! Have to try and see if we can get the others across ok. Hope everyone is reasonably well! :)

[Braindrain]

I'm doing okay and I hope that everyone else is, too.:) I'm looking
forward to seeing everyone back on the boards again!:) :)

[MegNJaxMom]

We're here! I changed my user name though... I used to be hedda.

I hope everyone finds their way back. :)

[LIZARD]

YAY!!!!!!!!!!!!!!!!!!!!! :D

John, THANK YOU SO MUCH for everything you have done to get the site back up, and to help many of us (including me!) get back in after the apparent glitch that had shut us out and prevented us from posting. We all owe you so much for all you do to help us all stay connected and able to support each other. :) Thank you, thank you, thank you, thank you!!!!!!!!!!!!!!!!!! :D

So...how is everybody??!! Some of us have been hangin' out on other sites, but I know many others were in limbo and hoped we'd eventually be back. Well, we're here!!

I am trying to kick a cruddy throat congestion/allergy thing at the moment (been about a week), but aside from that, life is good. The kids have good teachers this year, and I especially like Drew's teacher. This'll be a great year for him, and it's about time he was challenged.

NNNNEEEEEEE***XXTTTTTTT....


LIZARD, who missed y'all so much!!!!!! :D

[gossame1]

Liz,

I'm here on this site as well, read about it on Escoboard. See you on the others as well!

BTC

[canadianlistener]

Robert in Canada is here and still have spina bifida, hydrocephalus, scoliosis, syringomyelia, and chiari malformation and still getting nowhere with doctors. The neurosurgeon doesn't want to believe that the pain I am experiencing is neuro-related to the point where I had my 3rd colonoscopy in 6 years. The doctor that did the test is so fed up with my neurosurgeon that he still hasn't given me the results of this test.....a month later.

Other than that, things are ok. The VP shunt is working. I am still working.....but my employer knows I am in a whole lot of pain and wants me to go out on long-term disability. I am being stubborn and not going to do it.....yet.

I know one thing.....it is good to be back on here. Welcome home everyone!

Robert

[CathyE]

How fitting. I am having the best day I've had in AGES, and Braintalk is back up!!!
It's been lovely & sunny all day, but rain is on it's way for several days and that almost always means trouble for me lately.

Oh well, one day at a time!

Cathy in Toronto, Canada

[Austinsmom]

Hi I am here!!!
I hope to catch up with you all, Austin is in college doing OK and loving school
Glad BT is back
Love to each of you,
Deborah

[CoolAngel28]

Okay,I made it,but,changed user names...guess who?? (Kristin,you guys..)

[Suecr]

I am here, update on little Hayley later!

[cnewmann]

Hi everyone,

I'm new on here. Heard about you on Annie's Angels. I had a brain aneurysm four months ago and developed hydrocephalus. I have a shunt and seem to be doing fine.

I am back at work fulltime. Other than some mild headaches first thing when I wake up which do not last very long and a slight lightheadness when I first lay down, I guess the shunt is working.

Cnewmann

[GTF]

Finally

The weather in Florida is getting better.

GTF

[LIZARD]

Hi everyone,

I'm new on here. Heard about you on Annie's Angels. I had a brain aneurysm four months ago and developed hydrocephalus. I have a shunt and seem to be doing fine.

I am back at work fulltime. Other than some mild headaches first thing when I wake up which do not last very long and a slight lightheadness when I first lay down, I guess the shunt is working.

Cnewmann

Welcome to our happy, nutty family! :D I hope you find all the support, info, comfort, and friendship here that I have over the past 4 1/2 years.

It's great to hear you're doing so well. :) Just pace yourself carefully. There are likely to be good days, bad days, and everything in-between. I have always had hydro (comin' up on 40 years), and I live very well with it most of the time, but I also know that that can change at anytime, so I keep looking for any new info on it, especially for the--uh--middle-aged.

Make yourself comfortable, and please ask any questions you have at anytime. We'll do our best with 'em. :) We're glad to have you with us!


LIZARD :)

[DystoniaGal]

Finally

The weather in Florida is getting better.

GTF


George are you saying you don't like the heat and humidity. It is nice that it is finally cooling off?

Did you ever find a house, that was reasonable enough for you?

[LIZARD]

George are you saying you don't like the heat and humidity. It is nice that it is finally cooling off?

I don't know how anyone tolerates the heat and humidity in the deep south, especially with hydro. I lived in SC for 3 years, and if I couldn't be in AC, I felt like I was dying. It did a number on my sz control, too. :(



LIZARD, who rarely experiences such a problem now, way up nawth! :D

[jennifer]

How is everyone?

[ian]

Yay! we are back in bussiness .. hehe just thought i would pop in to say i made it! :)

[GTF]

Dystonia, for some strange reason I can live with the heat.
I must stay out of direct strong sun though.
As for the humidity. That's easy!
3 showers a day.
I've had to go out and buy extra underware.
The past 2 months are the worst time of the year.
5 minutes in the garage and your drenched.
Starting today though the humidity is going down.
I don't go out in the direct sunlight.

Yes we bought a house. Now I'm back to yard work.
But with my head I only get a few hours at most before I have to go inside and rest my sore head. Picking weeds hard.
Bending over even for 5 minutes is a real brain killer.
Leaves me very "HIGH" and spacy.
The neighbors don't notice I wander around like I'm drunk.
But it hurts.
It pays to live at the end of the block.

George

[monicad1974]

:) Monica ...in NC
aquired hydro from brain tumor in the ceribellium attached to the brain stem, no meds to keep swelling down shunted 9 days layer, 3 eye surgeries to fix crossing from pressure, radiation and psycal therepy (had to learn to walk again at 8y/o). 95 scar tissue removed; 02 scar tissue and distal clipped, tried to repair distal. Another hopsital took out shunt put another in 4 days later, 14 months faulty shunt;03 new neuro new revision, July 06 vp switched to va CSF not draining.

[laurensmom]

I made it, glad to be back and see all the family!!!!

Love ya guys,

Debi

[GTF]

Monica,
The pink is kewl. But it sure is difficult to read.
Much to light for these old eyes.

George

[Nikki_Poohs Mom]

It's so good to be back! We are anxiously awaiting the arrival of our newest blessing "Laci Marie," Nikki's baby. During her pregnancy we had one big shunt failure scare, early on. Thankfully, it was only a scare! The last trimester and after delivery there is still a 6 month mark postpartum time frame that there is a high chance of shunt failure. But we are staying optimistic :)

She is still taking the zofran to control the nausea/vomiting. She has been having a lot of braxton hicks and lower pressure for the past couple of weeks. She's here with me today and having them again as I type. So we'll wait to see if they turn out to be the "Real Deal" :D

I'm really enjoying being able to share in all of this with my daughter. Such a very special time.

Hugs ~

Nina

[Nick,Brian,andJon'sMom]

Jonathan is now in 2nd grade and loving school. He is doing very well shunt wise. Still dealing with the headaches and an occasionaly seizure but overall is doing great.

I am very happy to have Braintalk back.

Marcie

PS: Where was the Braintalk 2 board that people are talking about. I didn't know that one existed.

[sofiebest]

Happy to se the room in function again, a big hello to all.
Our son had hydry dx and first shunt 6 months old in 1969, shunt replaced many times until he was 19, doing well since, a computer specialist and father of 3.
Hereditary neuromuscular disorder,cmt, runs in family, that is another story for another forum.
Hoping lowtide will soon be back too.
Per, Norway

[KathiDG]

Hey, it's Kathi here...glad to see everyone made it back to the original.. :) (Thanks JL btw!!)

I'm doing GREAT with the programmable shunt now. Still some neck soreness/stiffness. When I came out of surgery, I had at least 5 marks/cuts on my neck where they were working on getting the distal end where it should be...I'm still sore in the neck a lot of the time, I think because of that. I feel a pulling sensation in the neck, which I'm sure is the new tube.

Other than that, if you all remember I was having the chronic headache issue that wasn't responding to any type of drugs OR caffeine...the neurologist had said that if the headaches were SHUNT RELATED, caffeine would NOT help. So, on Aug 18th, I had a Medtronic Strata valve put in. Not sure why my surgeon didn't go with the Codman, but...I haven't had a headaches since surgery, other than these headaches that seem to come when it rains or storms out...I guess that's kinda normal for some hydro's anyway? Never had it before. Other than that - SWEET RELIEF...I am actually my old self now...

Now, to find a job again.....I lost my job because of all the headache issues pretty much....my dept got shut down, but I was qualified to go into sales (my numbers were high enough), BUT due to the medical issues, I believe they just let me go...Oh well....other than that, I'm doing AWESOME.... :) :D

[mybaboo]

Hi everyone! We're glad to be back! Molly had a rough summer, but finally got out of the hospital in late August. I don't know if you'll remember us but she had cortical resection for seizure control in May which resulted in hydrocephalus and meningitis (which eventually formed into a brain abcess) and spent the summer in the PICU on antibiotics with EVD's awaiting a shunt. She has been seizure free following her resection--well after the fevers subsided. She FINALLY got her shunt in early August and was doing great until last week when a bad cold turned into pneumonia and landed us back in the PICU.....only in a different hospital 2 states away. After fending off the ns team here who seemed to actually "hope" something was wrong with the shunt, they have cleared Molly and we hope to get her weaned from O2 and home this week. Whew, that was a "mouthful". :)

I really missed this outlet!

[Braindrain]

I was just about to post and ask when Nikki was due, and that's when
I saw the ticker at the bottom of your post.;) I hope she's doing okay
and I can't wait to see the baby pictures!:) :D

[hunterjjumper]

Hi! I am some what new to this site. Some of you know me, my daughter Helen is 5 and has hydro, VP shunt placed at 3 mos, seizures, CP, and currently waiting results of an MRI to see what else may be going on (I am so not looking forward to learning more medical jargon).

I am so glad that this site is back up, as I expect to be posting more, for the first 5 years we didn't really seem to have any problems aside from the occasional seizure, and shunt failure scare, but now we seem to be ramping up to problems. I think I have used up my fair share of prayers from my friends, and often they just don't completely understand. It is nice to be in a place were people get it!

Tammy, Mom to Helen 5 yo, Jill 10 yo seizure disorder, Evan 13 and a smart alec, and one big black lab. Married to Ron for 20 years, WOW!

[Brandon's Mom]

Welcome Back Hydrocephalus Family

My kids are doing much better than I am, thankfully.

Brandon doesn't have any Hydro related issues right now, but we are still dealing with his Cerebral Palsy issues- more specifically, the tightness in his left arm/elbow. I kept him in High School, despite his "class" graduating last year, and he is working at another restaurant this semester folding silverware in napkiins.

Brittany is still having recurrent pain in her back as well as her chest but she is an adult now and I can't make the stubborn girl (gee, where could she have gotten that trait from? ;) ) go to the doctor. She will let me know when she can't stand the pain anymore and I'll get her in to the Dr. She is a full-time college student in her first semester and working part-time as well and seems to be enjoying both although she doesn't like the fact that she's too busy to do any community service/volunteering at this time.

Andrew's soccer season starts soon so they are already doing conditioning and he'll find out in a couple of weeks whether he will be playing JV or Varsity this year. He is the Sophomore Class Vice President at his high school so he's very busy with Student Council activities (barely saw the kid last week because of Homecoming week).

I won't even get into my health :mad: :( I'll just say I'm not doing well. :rolleyes:

Glad to see the new names and the old friends and I hope more of our family finds their way back to us to give us updates.

[Lemontree]

Hi Everyone,
I'm so glad this is back up...Even though I don't post a whole lot, this site has been so informative and so insightful, I used to go here on a reg. basis just to check to see how everyone is doing.

I'm allright..schools fine. I had some eye issues a few months back but I'm being monitored and things seem to be fine.

Welcome back everyone!

Lemontree
age 38
congenital hydro diagnosed in 1968

PS...my VP shunt will be 29 in November!!!!

[hydrohugger]

Hello to old friends as well as new ones!!
I'm so glad BT is back!! Alrhough I didn't post much here, U did develop friendships here and am glad to know that all my friends are doing relatively well.
Since the last time BT was here, I have moved from the "land of toys and candy" to the "Volunteer" state...Tennessee. Things are not as accessible here as they were in my dream home in Ohio, but I like it here. Everything I am interested in doing is about 2 miles away, so, it is good that I am in better shape to walk now. I hope to find a good hospital and good doctors here. It has been almost 14 years since my last surgery, but, you never know.... I went nearly 18 years with NO problems and then the bottom fell out, so I am not taking anything for granted!
Just wanted to "pop" in and say HI and welcome back!!!! to everyone...
BTW, Li'l Sis, I have NO long distance carrier right now and the 10-10s don't work anymore, so YOU will have to call ME until further notice!!!

((((((((((WELCOME BACK hugs to all !!!!!)))))))))))
Dar

[Braindrain]

Lemontree: I'm glad that school's going well for you.:) Sorry to hear
about the eye problems, but I'm glad that you're being monitored on a
regular basis. Congratulations in advance on your shunt birthday!:)

Dar: Congratulations on your move! I hope you're able to find doctors
and a hospital that you like.

((((((((Lemontree)))))))) ((((((((Dar))))))))

[ninaem]

Hello all! I'm so glad BT is back!

Hope everyone is well. I'm good. Can't wait to catch up on everyone.

[LIZARD]

Hello to old friends as well as new ones!!
I'm so glad BT is back!! Alrhough I didn't post much here, U did develop friendships here and am glad to know that all my friends are doing relatively well.
Since the last time BT was here, I have moved from the "land of toys and candy" to the "Volunteer" state...Tennessee. Things are not as accessible here as they were in my dream home in Ohio, but I like it here. Everything I am interested in doing is about 2 miles away, so, it is good that I am in better shape to walk now. I hope to find a good hospital and good doctors here. It has been almost 14 years since my last surgery, but, you never know.... I went nearly 18 years with NO problems and then the bottom fell out, so I am not taking anything for granted!
Just wanted to "pop" in and say HI and welcome back!!!! to everyone...
BTW, Li'l Sis, I have NO long distance carrier right now and the 10-10s don't work anymore, so YOU will have to call ME until further notice!!!

((((((((((WELCOME BACK hugs to all !!!!!)))))))))))
Dar

Still the same #, right?? I think it's still in my caller ID. I'll letcha know if it's not. :)


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

Li'l Sis LIZARD :)

[knowamiracle]

Hello, Aggie here formerly noah'sgrandma, we are doing great, development for Noah is slow but steady, nothing major is a problem , knock on wood!!!

[southernlady]

I actually belong here to as the spouse of someone with NPH. We chased the diagnoses, thinking he had other problems for ages. We ended up at the Medical College of Ohio last November with his neuro (at the time, he was his new neuro) and that one saw the markers on the MRI that everyone else missed.

He had his shunt surgery in late Feb this year. He is doing well but sometimes he still has a few issues from before. His memory is NOT what it was 3 years ago but it IS better than one year ago.

Anyway, I'll be popping in and out of here too along with the forums for all MY ailments. Liz

[ConnersMom]

I had to re-register but here I am. Conner is doing great. Started Kindergarten this year and is playing soccer again. I need to update my profile and get an avatar... glad to see Braintalk back up.

Missed all my online hydro/child neuro friends! Karen

[mister]

Still kicking and screaming with hydro after 51 years. My first shunt was placed 51 years ago this month. Be well all and stay free from trouble

[DiverDownAz]

http://planetsmilies.net/party-smiley-551.gif

The forum is back, Finally!!!

Went to see my opthamologist for a routine check up, found out I have hemoraging of the fovea.:( Was able to get an mri and appointment to see Dr Rekate last friday. He says that everything looks normal, smaller ventricles, taped the shunt checked pressure everything is good.;) So now we have to find out whats causing the eye problems. :(

I have missed the forum. even though I am not a routine poster I do (did) check in most days.

Steve

[lisajean]

Just checking in. I missed you guys. Hannah and I will be traveling to Mayo for further evaluation on 10/21. keep us in your prayers.
love you all,
Lisa

[Lee Cook]

What a busy summer!! My Hydro and headaches are doing GREAT. Gall bladder surgery went very well and left me feeling better than I have in two years!:)

I graduated with my Master's degree in business in May!

Work is busy, and my son is driving us CRAZY but is otherwise doing great.

Otherwise, we had a fairly uneventful summer. I missed you all, and I hope to stay in touch.

Thank you,
Lee

[LIZARD]

Welcome back, Lee! :)

I'm so glad to hear how well you're doing. :)




LIZARD :)

[Coaster Crazy]

It's amazing how much we miss BT when it's not available!!!!!! I was wondering about all the kiddos here all summer!! Even the big kiddos too!:) Take Care Everyone. Stacy.

[momtwoboys]

Hi everyone,
I have lurked but never posted before. I am Chris and have a 5 yr old son with Hydro. He was diagnosed at 12 months and shunted at 14 months. He had a good run with that shunt up until this August when it malfunctioned. He was taken by ambulance and placed into Ped ICU until his revision. After the revision the new shunt developed a clot and another revision was performed two days after the first.We were discharged shortly after that revision only to return a few days later. He had developed an infection and was externalized for a few weeks. Another VP shunt was then placed on the left side. The others were always on the right. And, this time they shaved his entire head.These steps were taken to reduce the chance of infection. It worked! He started kindergarten and is doing fantastic!!! I am just in awe at how incredibly strong he can be. Children are just amazing!

Chris

[LIZARD]

Hi everyone,
I have lurked but never posted before. I am Chris and have a 5 yr old son with Hydro. He was diagnosed at 12 months and shunted at 14 months. He had a good run with that shunt up until this August when it malfunctioned. He was taken by ambulance and placed into Ped ICU until his revision. After the revision the new shunt developed a clot and another revision was performed two days after the first.We were discharged shortly after that revision only to return a few days later. He had developed an infection and was externalized for a few weeks. Another VP shunt was then placed on the left side. The others were always on the right. And, this time they shaved his entire head.These steps were taken to reduce the chance of infection. It worked! He started kindergarten and is doing fantastic!!! I am just in awe at how incredibly strong he can be. Children are just amazing!

Chris

Hey, Chris. :)

Welcome to our family! :) Your little guy's hydro history sounds a lot like mine. I was dx'ed at 3 weeks, but I had much the same surg history 'til 13, when I had what has so far been my last surgery. (I'm 40 next month!! :D )

Please get comfortable and join in anytime with any questions or comments. We're glad you're with us!


LIZARD :)

[georgia]

Hello to everyone, glad Lester has things up and running so to speak.
I sincerely hope, pray everyone is coping in spite of all we have been through and worry about!
Georgia