How do people deal with fear surrounding hydro?

[Jordan]

Hi y'all.

I know that sounds like a bit of depressing title for a thread, but I'd read jmleanz's post about poor little Kyle and what the NS said, and it really hit home that many of us have to deal with real fear on sometimes a daily basis and just wondered if anyone has any coping strategies that they find really work to share? Fear is an odd emotion - I find it very different to feeling just nervous, or restless, or even anxious - it's very extreme so ways of coping with it are important.

I've become much more fearful regarding hydrocephalus since going through a bereavement recently - probably because it brings up your own possible mortality and especially if you have a condition like hydrocephalus - and nearly every night now I'm having nightmares and flashbacks regarding past hospital stays and surgeries, which is really affecting my sleep.

What's the answer? When we get scared by an experience/something that someone has said to us, should we seek help, try to forget it, talk it through with friends, just have a thrash out at the gym? I used to find talking to friends REALLY helped but recently I tend to NOT talk about things regarding my illness as I've been in hospital so much over the last 18 months I think others must be sick of it as well as me! :rolleyes: I used to go to counselling but as I had to drag up EVERY negative hospital experience I'd had and re-live it, I stopped going because I felt terrible after every session! Maybe just a bad counsellor?

Anyway, any sharing tips/advice would be welcomed from me and I'm sure from jmleanz - and anyone else who's been having a bit of a scary time recently!

Jordan xx

[gill105]

I live in constant fear that Orlaiths shunt is going to fail. Cant seem to get past it, so I would love to hear from people on how they cope.

Gillian

[Nathan]

I think this is a really good topic, as it is something I've struggled with for years. The first 3 surgeries that I can remember, I went from totally healthy to total shunt failure in a matter of hours. I developed an almost paralyzing fear. Eventually, that fear led to an anxiety disorder and panic attacks. I didn't know what to do, how to cope. It felt to me like I had a ticking time bomb in my head, and I was terrified that at any time, that bomb would explode.

For most of my life, I knew very little about hydro, and in 2005 I decided I wanted to know about this thing in my brain that was controlling my life and turned to the internet. I started researching hydro and also looked for support groups in my area. I didn't find any support groups anywhere close to me, but i did find support groups online and the were a sanity saver for me. The support and information I got from those sites were like a glass of water in the desert to me. I spent hours online every day. Knowing more about what I was dealing with, and knowing I had people I could talk to that knew what I was going through helped me immensely.

Other things that helped were taking time out when I start to feel overwhelmed. I also try to distract myself/direct my thoughts elsewhere when I start to dwell on things. With all the things I have mentioned, my fear and anxiety over the hydro have decreased significantly. It's still there, and I'm still aware that anything can happen, but now I'm able to control the fear, rather than the fear controlling me. Sorry this is so long. Thank you for listening. And thank you to everyone, I don't know where I'd be without you.

Nathan

[alizesmom]

My fear can be overwealming. We "have run out of places to put the shunt" with Alize. This one has been in for 10 months and I pray to God it lasts forever. I'm terrified when he sleeps too long since this is his usual presenting sign. Now, just thinking about it and I'm crying and I don't cry. Karen

[LIZARD]

My fear can be overwealming. We "have run out of places to put the shunt" with Alize.

(((((((((((Karen))))))))))))). :(

I can't even imagine how scary these words are for you. :(


*hug *hug *hug


LIZARD :(

[Jordan]

Actually I agree with Nathan that talking to people on here has been fantastic. The support and help you get is so comforting. My friend who has a shunt said she's just been for some hypnotherapy to help her deal with panic attacks she sometimes has when she's facing a surgery, or when she's just generally scared of shunt failures. She said so far, so good. It just helps her deal with the paralyzing fear she feels. I might give that one a try as I've heard from others that it's a good one to do.

[jmleanz]

Thanks, Jordan, for posting this. I do find so much comfort in this group between the support of everyone and the education from everyone's experiences. The only other thing that helps me a bit is time -- I already feel more calm now that Kyle has had 4 good healthy days since surgery. Whew!!!
Thanks!
Janice

[Nat Hyland]

I don't really have a fear about hydro. I figure what will be, will be, and I just get on with my life. I guess that was the way I was brought up. I have always been told since I was very young that I shouldn't rehash things, and I guess that's how I've managed to always get through.

I was actually asked whether I was afraid of having my 6th surgery by a nun who came to my hospital bed to give me holy communion before my operation. I told her I wasn't scared, and I really wasn't. I was more concerned about relieving the pain I was in, and if it meant I had to die in the process, well, so be it. I am not afraid of dying for that matter either. I have no commitments and no expectations for my own life, and because of that I feel I could die quite happily tomorrow.

It is a pity we can't all be in that situation.

Nat.

[Austinsmom]

My son Austin has had a shunt for 20 years on St patty’s day, 2 working shunts for over 5 years,
12 revisions and one fenestration later, Austin takes the attitude, you live with what you got, yet this is song is what he use to call his hydro song.
As for me the parent I have a deep seated fear, every flu, ever badly slurred word, and any complaints of headaches, put me into red alert, I will never feel my son is safe, I know what second guessing can do both good and bad…yet Austin has always just dealt with his Hydro open and just wanting to get on as if all is OK and It is OK
But my dear sweet boy is in college, living life ….
My advice is expect yourself to live a good life and as Austin says deal with the cards that are dealt to you as they come…..
We need to push for more research…there should be a better mouse trap..

http://www.youtube.com/watch?v=Dmc9qpqjIW4

Crawling

crawling in my skin
these wounds they will not heal
fear is how I fall
confusing what is real

there's something inside me that pulls beneath the surface
consuming/confusing
this lack of self-control I fear is never ending
controlling/I can't seem

to find myself again
my walls are closing in
(without a sense of confidence and I'm convinced that there's just too much pressure to take)
I've felt this way before
so insecure

crawling in my skin
these wounds they will not heal
fear is how I fall
confusing what is real

discomfort, endlessly has pulled itself upon me
distracting/reacting
against my will I stand beside my own reflection
it's haunting how I can't seem...

to find myself again
my walls are closing in
(without a sense of confidence and I'm convinced that there's just too much pressure to take)
I've felt this way before
so insecure

crawling in my skin
these wounds they will not heal
fear is how I fall
confusing what is real

crawling in my skin
these wounds they will not heal
fear is how I fall
confusing confusing what is real

there's something inside me that pulls beneath the surface
consuming/confusing what is real
this lack of self-control I fear is never ending
controlling/confusing what is real

singing loud rock helps me face fear and vent my anger:eek:

[CoolAngel28]

Every flu??!! You sound like my parents..especially my mom.

[MegNJaxMom]

Every flu??!! You sound like my parents..especially my mom.

Kristin.... it truly is a mom thing. My husband puts me in check most of the time... Mr. Positive, until the crap hits the fan and then he freaks like the rest of us. I totally understand the every flu thing... vomit sends me into high gear. Loss of balance sends me into high gear. That has been happening more lately and I don't know what to think of it.... seizures? shunt?

I try not to dwell on the fear.... if I did, I would lose out on so much with Megan. I must say that today she fell asleep on my lap and it was the most bonded I have ever felt to her.... and she woke up (and pottied on me cause we hadn't gotten a pull up on her yet :rolleyes: ) and then kissed my cheek.... it's those moments that make the fear less and the LIFE so much more.

[Austinsmom]

yeap...every flu.

[LIZARD]

she woke up...and then kissed my cheek....

Awww...that's "I'm really okay, Mommy. You can chill out now." :) Give her a kiss from me, too. :)


*hug *hug *hug


LIZARD :)

[LIZARD]

yeap...every flu.

Even though I don't have a kid with hydro, I get this. We generally know, as adults, whether we're headed for trouble or not, but this is two-fold: 1) As moms, we have no idea if it's really a flu or not (or if a flu will result in sz, as it does for some of us); and 2) watching your child suffer is a scary thing for any mom, but if the child has something chronic and potentially life-threatening, as we do, there's no room for complacency. Yes, it drives those of us who know better insane, especially when we do know better :D, but there are times when even we don't know, and as I have said many, many times, seeing a seizure is MUCH scarier than it is to have, because we know we'll be okay, but onlookers don't know that, or they're too scared to remember. Besides, we have no awareness or recollection of any of it.

Some years ago, I woke up with partials and knew it wasn't going to be a good day, but we had scheduled Drew's 3-year eval for services in Prov, so I had to get up and go. Hubby was going with me, so I just thought I'd be miserable until we could leave and I'd just go home and go to bed. Imagine my shock when one didn't stop! :( :o :eek: I came to in an exam room, and of course, I was told what had happened. (I already knew.) I was asked if I knew where I was, etc., and I did. I also remembered that there was a young couple in the waiting room with us along with their young son and thought, "OMG...I musta scared the holy $h!t out of 'em!"

The next day, about 90% back to myself, I called the center and talked with the receptionist, told her who I was, and that I was making sure the couple (and especially their little boy) were okay after witnessing that. (I had even turned purple from lack of oxygen for a few seconds. :eek: ) She actually choked up somewhat and said they all (including her) were just concerned about me. I assured her I knew I'd be okay, and that was that. :)

My mom always said I would understand when I became a mother myself (and I think she secretly hoped and prayed I would, even though she was shrouded in uncertainty about it), and I can tell you that I do. She trusts me to know when I need help because I have shown her I know when to get it. Besides, I have a good hubby to watch out for me. :) We just have to respect each other's fears and concerns, even if we can't truly empathize with them.


LIZARD :)

[Love My 7 GEMS]

For me, the fear is always in the back of my mind. Matthew has (so far) had only one revision at 2 months old, and is doing so very well, that it's almost hard to believe that when he was born over 1/3 or his brain was fluid! He has a CT scheduled for Tuesday and that will tell me even more, I hope...but...always in the back of my mind is that knowledge that the next time he starts gagging/retching, it could be "it". He has a terrible time with constant tummy issues, and it's a guessing game with him if it's just his food issues, or flu or if this is the time he will actually need to go see the NS. I just have to trust my own gut with him, and look for more than 'just' his tummy issues right now.
But... HIS fear is all too real. He is only two years old, and this poor guy has a true PANIC attack when we walk into ANY hospital or doctor's office, even if the appointment isn't for him. He HATES the doctors, all of them. He hates the nurses... all of them. He even cried when a cleaning lady walked into the exam room to change the trash bag. He has NO TRUST of anyone in the medical field. And he's ONLY two! What is going to happen when he is 3, 4, 5? His hydro is lifelong, his G-Tube issues are for at least the time being, and I have no idea when or if he will learn to eat by mouth again. His asthma is probably life long...so we are always going to see doctors about various issues, and it completely panics him each and every time. So, his is not a fear of 'hydro'...hell, he doesn't know he has it! But, we still have to see too many doctors, too many specialists, to many appointments, and just keep praying that his hydro DOES keep itself in check...because the day may come when I will just know beyond a shadow of a doubt that 'it's time'. And THEN my fears will kick in, I'm sure! I just keep praying that I can reason with Matthew by then, and that he will have a better understanding of why all this stuff has to happen. But then, do any of us understand the 'why's?' I don't think so! (But it helps to talk it out....yes, it DOES! Thanks for always being available!)

Dori

[LIZARD]

But... HIS fear is all too real. He is only two years old, and this poor guy has a true PANIC attack when we walk into ANY hospital or doctor's office, even if the appointment isn't for him. He HATES the doctors, all of them. He hates the nurses... all of them. He even cried when a cleaning lady walked into the exam room to change the trash bag. He has NO TRUST of anyone in the medical field. And he's ONLY two! What is going to happen when he is 3, 4, 5? His hydro is lifelong, his G-Tube issues are for at least the time being, and I have no idea when or if he will learn to eat by mouth again. His asthma is probably life long...so we are always going to see doctors about various issues, and it completely panics him each and every time.

There is no magic age, but he'll come to terms eventually. We all do. :) I know that sounds awful, but it's so much better than living in sheer fear and panic for life! It becomes part of life, and we handle it. I just started endo treatment for hypothyroid last summer, and each visit, I have to have a blood draw to check levels. I have only one vein left that anyone can see, so we use it. The tech always tells me to look away, and I laugh. I have always been a human pin cushion. Such things don't even make me blink anymore. :rolleyes: :o


LIZARD :)

[Austinsmom]

We always told Austin.. You have to live with what you got, and it seems to just be the way it is, because it is, the way it is, just like everyone else expect the best out of yourself and live life where your at, one day, one goal at a time, working towards your future. While knowing that surgeries are most likely in your future maybe many surgeries, but that also is just the way it is, strength, courage and the knowledge, experiences and resistance, awes most outsiders, but to have shunted hydrocephalus some how you brave souls just live life as it comes at you, strong, touched by the hand of God, teaching all of us the meaning of real character.
I salute all of you with Hydrocephalus!! I am proud to have gotten to know you, some of you have truly helped my life, and at times my weak mommies heart has caused me to have terrible fear and I came here and you all helped me through Austin’s many revisions, I thank many of you, some of you forever and I wish all of you well.
You all have shown me how to be brave, and I thank you for that and just knowing my Shunt puppie has made me a better person.
Fear is there…but living that where it’s at.
Hugs
Deborah

[MegNJaxMom]

After our surgeon appt. today (to remove a mole while they do tubes/adnoids/sinus irrigation) I remembered something that always keeps Megs at ease.... I tell her "I love you enough to help you through this" and I always tell her what they are doing/going to do. If I don't know, I let whomever know that she needs to know the step by steps... that has helped TREMENDOUSLY in the "fear of doctor" thing.... but Dori, Megs was just like that just a short year ago. Would SCREAM when anyone walked in the room. Would SCREAM "OUCH OUCH OUCH" when they touched her in anyway. I found out she really needs to know what's going on... and if they aren't willing to tell her, I let her kick the crap outta them! It is amazing how a good doc or nurse will respect that, because they see instant results. Good luck helping Matthew navigate a world that is pretty scary to a little one. I still remember the people that poked me the first times when I was diagnosed diabetic at age 8. The doctor that delivered the news is still practicing at the clinic we go to (family practice). I still don't like him to see me unless I am REALLY sick! But that was also back in the days of "sneak up and do it without talking about it".

WOW! That was longer than I intended!

[Heather]

I'm feeling higher than normal anxiety, at the moment, because we are about to have Aidan spend 13 days at a children's nursing facility, for sleep evaluation and incidental, but desperately needed respite. Sharing is one of my coping habits.
This thread reminds me of the difference betwen my current emotional state and FEAR.
I think what you describe could be PTSD. Exercise might help to burn some of the fear chemicals out of your system, but you might need more specific treatment.
Sometimes I worry I might be in denial. But, we went through so many false alarms, running to the ER every time Aidan threw up or screamed, for the first yr-18 mo, post shunt, that fear was finally dulled. We were like the "Boy Who Cried Wolf", until Doctors finally told us to stop bringing him in, unless the symptoms continued longer.
Aidan is watched so closely by me, we're virtually symbiotic. He's 4 1/2 and sleeping in our bed, between us! I moniter and fine tune everything about him and worry that it's absolutely necessary to maintaining his status. I know I'm a worrier, but I try and stay in the moment, on top of the little steps. Shunt failure is on a back burner. I know that most shunts eventually fail and Aidan has only had his for almost 3 years, but I tell myself we'll know if it happens and deal with it then.
Of course, I don't have the shunt in my own brain and can't imagine your personal fear.
If Aidan has any health crisis, let alone shunt failure, while he's in the facility, then, I will feel FEAR!
Aidan was very late getting his shunt in the first place at 21 mo. He had been suffering since 3-4 months after his premature birth at 26 weeks. No Doctor would believe he had hydro, or even acknowledge the pain I was insisting he felt. I had taken him for so many "second" opinions, by the time he was finally diagnosed, that I didn't want to be right. That felt like pure horror. The fear during surgery was more bearable, since I believed the Neurosurgeon was saving his life.
I think it's got to be useful to distinguish the difference between worry and fear. If either one is chronic, behavioral therapy or medications might help more than constantly reliving a traumatic experience. Maybe you should try another therapist?
I don't know if it could help, but I've been loving the Oprah online class with Erckhart Tolle, based on his newest book, A New Earth. It's free and available, recorded. I started reading the book and right away felt a growing sense of peace.