Roll call, everyone...check in

[CathyE]

Wow, we used to do these frquently! I see the last one was March '07 - depending on my search criteria of course!
I copied CoolAngel's format :D

Well, Laruen asked me how I'm doing. I honestly don't know what's going on with my shunt, but I'm doing better lately except for the odd pretty bad day, so I won't complain. I still can't be up a whole day tho.

I had my setting on my Strata lowered from the highest to the 2nd highest on April 4th. I might have had a partial blockage or ? as I drained like crazy the 2 days after. I could even feel my anti siphon device "click in" :eek:

At least now I know it works!
I had a bit of a rough go for maybe 5 weeks, almost gave up a few times, but boy am I glad I "hung in" ! (I had frequent spells of nausea and headache that required me to lie flat in bed for some time).

Anyway, I finally quit smoking thanks to Hydrogramma telling me about laser treatment to quit! Plus she warned me you really have to want to quit, so I did a lot of self talk both before and after!
I wonder if it will have an affect on what pressure setting I need? I did sometimes feel like it did something bad to my brain, sort of a "wooziness"?

Also I am glad the cold weather is over so I can get outside and walk! and
enjoy our neighbours' flower gardens!

Cathy
diagnosed at age 50 and shunted 8 months later on Sept. 27, 2001

O.K. Who's next? ...

[Jess]

I haven't been able to go back to work yet with all of the problems i have been having. This has allowed me to spend more time with my family, which has been nice. I am going in for hopefully, my last surgery for a while July 21. Then, i can continue getting on with the rest of my life. I am anxious for this next surgery, because i have been in a lot of pain in the last month. I am hopeful that everything will work out like Dr. R says this time around. Next?

[Brandon's Mom]

Brandon has fully recovered from the revision he had last month and keeps busy playing Wii bowling, watching movies, swimming in our pool and going out on weekends with his respite group. Nearly everything is done INDOORS because it has been over 110 degrees consistentnly for weeks now.

Brittany had an MRI last month that showed her ventricles are still kind of large and her chiari seems slightly worse (those things are measured in mm anyway). She goes to see the NS again later this month to discuss whether or not she wants to try a revision because she's been having some problems that she would like corrected before her fall semester of college starts. Today she got her driver's license- something we weren't sure if she would ever be able to obtain because of her difficulties. She also received yet another $1000 scholarship today too so she's one happy chick.

I hope you all have a happy and safe 4th. We are staying in town for it this year, but going over to Southern California next week to visit my brother and take the "kids" to the beach with their cousin who is coming from IL to stay with us.

Me? Hehe, someone always asks about how my health is so I might as well update now---- not good, seeing a pelvic pain specialist next month to see if there is anything that can be done to help with the chronic pain I've had since my hysterectomy last year. My other issues with the dizziness, balance, nausea and such are stable and persistent but thankfully the Vertigo attacks are rare as are the horrible migraines (although I am on the 3rd day of one right now).

Andrew and Mike are healthy and busy with the usual.

[CoolAngel28]

Cathy-I love it!Great choice of title!! :D

I'm doing great..Pain-free,and working--loving every minute of it.Enjoying movies/tv shows on this side.. Take care,everyone!! Love,Kristin

[LIZARD]

Hey, Good Peoples. :)

Been running around like a chicken with my head cut off since hubby's surgery, but he can get his eye open about 2/3-3/4 of the way (if he has to), and he thinks he's okay to drive (since he doesn't really use that eye much, anyway, as it has basically just peripheral vision), but we go back to the doc again Mon and will see then.

Aside from being exhausted, I am doing well. :) The Gluten free eating is slowly getting easier, and I'm getting better steadily. :) Caren is driving everywhere :rolleyes:, and Drew is trying to keep up with it all. :)

Neeexttt...:D


LIZARD :)

[lisajean]

Hi everyone,
Still fighting the battle here. For a short sweet time Hannah seemed to be improving. We were working on baby-steps with home health, trips out of the house, counseling etc.... In fact it was so good I was able to take her down to Disneyland and SoCal for a mini vacation this spring (with the obvious accomodations ie: wheelchair, lots of down time etc). Four days after we got home we went to a KT Tunsdall concert. Life seemed so sweet.
Then came the crash of 08. We increased pain meds, changed meds, decreased meds, had a shuntogram, changed her shunt setting down and then back up. Nothing thus far has helped a bit although dropping her shunt setting made her worse. I guess this means the darn thing works???
Local NS (small town, not big University Hospital) finally offered to change out Hannahs shunt to a Codman, but told us it was a long shot. Said he had no idea if it would help but that he doesn't like Medtronics shunts.
We also saw a new PM doc who was the biggest arse ever. He told us that children who dealt with chronic illness had mothers who were "very involved and were very knowledgable about their childrens conditions and therefore presented a unique challenge in moving on towards independence". Can I tell you how PO'd I was. Then he proceeded to ask me in great detail about all the meds, procedures etc that Hannah had been thru in the past 6 years. When I couldn't answer in detail he looked at me like I was an idiot. GRRR.
Ummmmm, should I be educated or not?????
OMG, I could go on but really I just want to go watch TV with Hannah. So I will leave you with our saga to be continued.............
much love,
Lisa

[Nat Hyland]

still motoring on :D!

Doing my first week of clinical placement at a local hospital and am finding it a great challenge! I got to do my first injections yesterday (on a real patient :D), and it was somewhat nervewracking - particularly as my first patient jumped as I put the needle in her buttock. causing me to jump too! I was put in charge of the care for two patients for the first time yesterday, which was great, but a lot to be aware of!

Still trying to get over a minor cold though, which has been around for about a week and is a bit of a nuisance. I really shouldn't be doing my placement while I'm sick, but I can't afford to make it up because I have another fortnight of placements straight after this one, and then I'm back at uni for second semester - the merry-go-round never stops :eek:! I told the other students at the hospital with me that I will probably drop dead from exhaustion at the end of next year when I'm finished my degree!

Nat.

[MegNJaxMom]

We are here! Megs is being her typical self... very stubborn and I like it (most of the time). We have a busy month ahead of us. Friday our church is putting on a huge festival for the Fourth. The 10th Megs has her yearly MRI (not looking forward to it... just a 2 minute rapid scan though, so just 2 min. of h&!!) We get one week off and then head to MN the 21st for "vacation" and a checkup on the 23rd. Jack and I need to squeeze in an eye dr. appt. too. Then August will be here already... then it is time to get Jack's school supplies cause he thinks he should go to kindergarten!

Megan started something she loves... PT at the pool. It is a summer thing that her PT does (which I think he should go to school to learn how to communicate, but that's a whole 'nuther rant) at the public pool. She loves it... I had to drag her screaming when the time was up... I had to go back to work and my swimming suit is still on its way to me, otherwise I would have been fine staying. So, looks like we'll be spending as much time as possible at the pool.

The only thing we need to get figured out is some behavior issues we're having with Megan... but she has been weaned off a med and depakote has just recently been increased... but she is strong and mean! I think part of it is that she misses school.

That's my long winded update... who's next?

[Nathan]

I'm still around. I'm doing pretty well shunt wise. No major problems since January. Not doing much, just spending time with/helping out family and friends. Will be calling my NS soon, try to get an appointment. I'm coming up on my 6 month shuntaversary, and that's been the longest I've gone without a shunt problem since 2001, so a little nervous. I'm not aware of any problems, and not expecting anything, but would rather err on the side of caution. Well, not much else, so.....

Nathan

[GTF]

I'm still lurking around.
My head is pretty awful.
It hurts too much all the time.
It never stops hurting.

[Lauren88]

I'm pretty good, home from uni for the long hols finally, just taking it easy generally, enjoying getting more sleep! and trying to exercise - have started swimming once/twice weekly, which will bring benefits (I hope!) :D Tone is increasing which is annoying and my lymphoedema of feet doesn't help, but hopefully the swimming will help this and I might even lose some weight! ;)

coming up to my two-year ETV-aversary in Sept, which I still can't believe!

hugs to all that need them and good luck with appointments! have a good holiday weekend (for the Americans)!

take care

[Jordan]

Hi all,
Apologies for being so incredibly absent of late, but been dealing with a lot of major decisions and caught a virus, similar to the one that stopped my shunt working last year and resulted in a revision, so been laying low. Touch wood, the shunt is behaving, I'm hoping to start back to work very shortly (yay!) and starting to feel brighter emotionally after a very black time which is unusual for me (the black time, not feeling brighter!). Been checking in once in a while and hope everyone is doing well and if not, finding the strength and support to carry through.

xx

[Love My 7 GEMS]

I hope you all have a happy and safe 4th. We are staying in town for it this year, but going over to Southern California next week to visit my brother and take the "kids" to the beach with their cousin who is coming from IL to stay with us.

Me? Hehe, someone always asks about how my health is so I might as well update now---- not good, seeing a pelvic pain specialist next month to see if there is anything that can be done to help with the chronic pain I've had since my hysterectomy last year. My other issues with the dizziness, balance, nausea and such are stable and persistent but thankfully the Vertigo attacks are rare as are the horrible migraines (although I am on the 3rd day of one right now).



eeeeeew eeeeeeew eeeewwwwww (think HORSCHACK!)(or is that ooohhh oooooohhhhhhoooooohhhhhhhhhhhhhhhhhhhhhh)
YOU'RE coming to SO CAL????? OH OH OH OH OH....girl........ which beach? where???? Let me know.... This whale won't be caught dead in a swimsuit on a beach....but I'll drive south for you! :D Besides, NOTHING could be better for my mental health right now, than a few hours with my live laughing machine~ :D


As for roll call... Matthew is doing great, starting to eat more and more by mouth, and experimenting with different things. I hope by the end of the year we'll have him eating more by mouth than by tube...that would be ideal!

And as for me... this caregiver needs a break... period. Too much going on to get into, but just suffice it to say I'm tired. But, hopefully things will calm down soon. Next week should be much calmer for me... (unless I get to see JOY!) :D

Dori

[gill105]

Hi all,

Well we are still around, have been reading but not posting much sorry. Orlaith is doing well. As far as the hydro is concerned no problems (touch wood it stays that way). She is 22 months now and still not walking due to the low muscle tone in her pelvis and legs (they dont know if this has to do with the hydro or not) She is pulling herself up to standing and cruising around the furniture, and is a little bundle of joy. She has started to babble a lot and has a good few words now, knows most of her animal noises and can definitely shout for Mammy or Daddy if she wants us:):)

Still on a learning curve with her. We are going to a family sports day on thursday with IASBAH (irish assoc for spina bifida & hydrocephalus), well thats if she is ok as she woke up with spots this morning and the dr thinks it may be chicken pox:eek::eek:and we are heading on hols on saturday so fingers crossed it isnt:):)

Gillian

[Coaster Crazy]

Been lurking more than posting, but still check in with "all" of you! Tired of all the rain in Pennsylvania this summer, but our friends to the south haven't been as lucky.

Haven't been feeling so great following my big 5th shuntaversary in June. Been having shortness of breath, back spasms, catheter discomfort, extreme tiredness, and some general weakness. Following up with the Dr. end of the month. Perhaps its just "middle age" sneaking up on me!!!!!!!!!!!!!!

Hope everyone who went to Salt Lake had a nice time. Will be anxious to read the next newsletter from the Hydro Assoc. Keeping all those in need in my prayers! Stacy:)

[Penny W.]

Hi all. I am going OK I guess.

Still ignoring neurosurgical things until February as I resolved I can't do anything about them.

My eye is still the problem. Yesterday I called about the six month appointment I was told to have with Dr. H. It is on 21st August. That visit is to be routine. I hope I remember to ask about laser treatment and might also ask him about a neurologist to look after the stroke part of things. S/he might know why my face has the sensation on the same side as the stroke. I have vague ideas of getting the squint (worsened by the stroke) repaired.

Nothing much else except I have gone back to counselling, still addressing the deaths of my mother and father. I go there again tomorrow morning.
Two sessions were by phone and one has been face to face.

Regards,
Penny.

[jomama]

hi everyone! i kinda 'lurk' alot too, come and read but a lot of times i dont feel like i have things to contribute! roll call is a good idea though! we went to a cabin in the mountains for fourth, does altitude by itself mess with some of ya's? i got this meaaan ear infection now :(

[KathiDG]

I'm doing GREAT for the most part.....hydro is under control, Thank God....shunt feels great....enjoying my summer so far....only concern would be this weird hissing sound in my right ear that I posted about earlier this evening...well, THAT AND the wet weather we've had here in WI....really bothers the shunt....well...I'm not really sure if that's considered as bothering the SHUNT or not....but it doesn't do much good for the brain pressure (ICP) when it rains like it's been....

If it so much as storms DURING THE NIGHT when I'm sleeping....I toss & turn....even if I don't realize it rained or anything....and I have a headache the next day....other times on gloomy, cold, wet days, I so much as open my eyes and wake up and I can TELL if it's raining or gonna rain just by the way my head feels....kinda cool, but also kinda annoying at the same time.....

Still can't get over the fact that I have that problem with the new shunt and never had this issue with the old one....lol....maybe every other shunt?? LOL....next one might be better...which won't be for another *crossing fingers* 20 yrs (!!) or maybe more resonably 10 yrs...lol...remains to be seen.... :)

At any rate, I'm doing pretty well right now!! =)

Hugs to everyone!! :)

Kathi

[ian]

hi all
no major dramas for me so far only that the area around behind my ear can get abit achy at times , not sure it is because of the wet weather we are experiencing over here

good to see everyone checking in , stay safe!

[canadianlistener]

Shuntwise things have been ok since I had the Strata valve programmble put in last June. The only time I go crazy with pressure issues is during low-pressure systems outside. Low pressure outside=high pressure inside my brain. As usual, I call the neuro's office and he doesn't return calls. I've called him at least 4 times since last Sept with no responses. Gotta love Canada!

On another note, as most of you know, my father was diagnosed with lymphoma which went straight to his brain, with 4 large tumors. He completed his chemo and radiation treatments and was doing well until 2 weeks ago when he started to forget people, including my mother. He became very agitated so now they have started him on new meds and have him sedated pretty much all the time. Doctors say he likely will not live past September.

It's been a rough part of Life's Headache, but it's these times that make you stronger. So everyone, keep smiling!

Rob

[Austinsmom]

Sorry I have not been here much as of late.
Austin is OK, he really enjoyed the Hydro conference, he went to his Neuro doctor last week and due to increased paralyzing episodes the doctor doubled Austin's Parkinson's meds.
This is a great concern, to me, yet the meds already seems to be helping.
I will be here only once in a while due do I have to conserve my Mother due to her having Lewy body dementia with Parkinson’s. it is a terrible disorder and will only get worse, so my attention is towards her, yet my worries wane to Austin.
Austin was excepted in the Neurodiagnostic Technology certificate program at college only 25 enter and he is one.:) I am so very proud of Austin, he works so hard for his grades and is doing very good in college. Austin is the most Incredible person I know.
love to each of you
Deborah