Adult with shunt and going to ER

[hydromom]

Hi

To those adults with shunts, I have a question. Does an adult with a suspected shunt problem get the same concern at the ER as a child would get? Do symptoms have to be really bad before you go?
I ask this question because Cathy seems to think that an adult with a suspected shunt failure will not get taken seriously unless vomiting, coma like state are apparant.
Would love some input.
Thanks
Marilou

[Nat Hyland]

I have experienced both extremes. The last time I had shunt failure and went to my regular hospital by ambulance, Miss M., my surgeon practically met me at the door, and I was in surgery in less than half an hour. No one questioned the existence or seriousness of my symptoms.

11 months earlier, my mother drove me to the hospital in the middle of the night (I had been celebrating my birthday, which had been two days earlier). Eventhough we had phoned my surgeon before we left home, and he knew we were coming in, when we arrived at the hospital, they stuck me in emergency and practically forgot about me, eventhough my mum had told them several times that Mr Klug was expecting us. On this occasion, I was unconscious before I was taken for scans.

I think ambulance is definitely the best way to go to the hospital if you are in shunt failure, because an ambulance will always receive priority treatment (ie be treated as an emergency), even if the ambulance drivers wouldn't even know what a blocked shunt was (which they didn't seem to, in my case).

I tend to wait until the situation gets really bad, even if I know what is happening. I know I shouldn't do this, but I don't like being in the hospital and try to put it off for as long as I can.

Whether you get taken seriously enough largely depends on your past history, the hospital you go to, how well you are known at that hospital, and how experienced those on duty are at diagnosing and treating hydro.

Nat.

[CathyE]

Thanks Marilou,

I just wish there were more Canadians in this group!

I know you are concerned about me. At least someone is!
My family doesn’t get my concern. I guess I have been scared and talked about it too many times in the past! So they figure I will be OK!

I attended our adult support group by phone last night, and my fears about ER were confirmed. (And I got too flared to stay on the phone after 1 hour, my brain sort of stopped working!)

The father of a young adult with a rare and bad form of Hydro, (not the X-linked, he seems fairly intelligent),
who usually has an 8 out of 10 HA, got worse, they took him to ER, and after 2 hours of waiting, his dad said he told him his pain had eased a bit and he wanted to go home! (he was still too bad to attend our meeting)

I commented “yes, sometimes you are too sick to be at the hospital !”

I do think it depends on the staff that happens to be there at the time!

But now I really have concerns about going to ER. After all, after I was diagnosed and not shunted I went and was told “you have your diagnosis, and this is not the place to come. It is between you and you Neurologist!
I was waiting for a 2nd opinion from a Neurosurgeon, since the Neurologist said my Hydro wasn’t bothering me and that I just had depression and anxiety!

I was there as it felt like heart problems – just like I experience now!

I have been at the highest setting or the Strata since 2002 or 3? -except for 3 months starting Dec.1/06. I feel like I am getting close to my pre shunt condition :(

I honestly don't know if I will regret going to London. I guess if it is just for a consultation adn doesn't go well, my NS will be none the wiser, and I'll have to stick with him or see another NS that makes you wait over 4 months!
(he uses the Strata).

Problem is VERY few adult NS's use programmables in Ontario and probably all of Canada! And my NS might be the only one in Toronto or Ontario who uses the Codman. (Yes I am seeing him even tho I currently have the Strata!)

As I posted, I am talking to my GP/PCP today to see about going to London, Ontario, for a 2nd opinion. After all, my current NS does not think my problems are Hydro related!
Plus he dislikes me – I have “shared” too many theories and “I read…” comments. So I have learned my lesson and I will be a “good girl” with my next NS, if and when I get one!

I'd still like comments re how to get taken seriously in ER !

AND if I call an ambulance, I will be taken to our local hospital which I don't even has a Neurosurgery Dept., so that's really not a good idea, since I don't really LOOK sick! just head pain & brain temporarily doesn't work.
Probably the adrenalin from ER will get it working just fine!

Sorry I got so chatty!
Cathy

[LIZARD]

Hey, Chatty Cathy (and Marilou, too ;) )! :D :p ;)

Actually, I only have one experience with this, thank God, but it was a good one. I was visiting my in-laws over Christmas more than 10 years ago when I woke up horribly sick--severe headache, nasty fever, chills, nausea, vomiting...the whole freakin' nine yards. I just knew I wasn't leaving my bed, ya know??

Anywho...I managed to have not just one, but for the first and (thank God) only time in my life, two GM szs, about four hours apart. My poor MIL (hubby's stop-mom), a RN, knew how I felt about having EMS called over a sz, but she figured since there were two, she'd better. (I later reassured her she had done the right thing.) Well, since the hosp staff learned I had hydro and a shunt, they sprang into action. I was tapped, cultured, pumped full of phenobarb...the whole shebang.

Strangely enough, we never did find out what it was. Looking back, I suspect it was complete immune failure, due to my severe and constant anxiety about Drew at the time. (He was dx'ed with autism a month later.)

This hosp was just a "community" hosp in Williamsburg, VA--not a hotshot hosp by any stretch--but they did all the right things (except send a neurologist in to give me a sermon :rolleyes: I told him to go away; I knew what to do! :D ). I have to applaud them. :)

LIZARD :)

[GTF]

I've been to the ER a few times myself.
The first time was shortly after receiving my first shunt and I didn't know they put a anti back flow valve into my abdomen.
That was until it clogged and the pressure in my head became grossly excessive.
I was looked after very quickly.The second time was because I developed an infection in my CSF. Lets just say I would of made Richard Pryor blush.
I received quick service then also.
The next few times I wasn't as vocal and I was looked after rather quickly.
When you pace back and forth looking like your going to explode they seem to move more rapidly. CT scan, neuro nurse practitioner exam, a few OxyCotin then they sent me home.
No vomiting and no coma like state and I still received rather quick service.

George

[Violet]

I've taken my husband to the ER several times when he thought there was trouble with his shunt. His main symptom was pain and their concern seemed to drop immediately when he told them he hadn't vomited. We've been to several hospitals trying to find one that will take him seriously but haven't succeeded yet.

[CathyE]

their concern seemed to drop immediately when he told them he hadn't vomited. We've been to several hospitals trying to find one that will take him seriously but haven't succeeded yet.

I am pretty sure I read a post from someone who realized that, so in order to get taken seriously, she said she had vomited! I don't like to lie, sometimes you have to do what you have to do for "survival" !

Actually, I don't know if I could pull it off as I have never been any good at lying !!! It must be written across my face, sort of a guilty look :D

Cathy

[CathyE]

Thanks for the info.
So, it really varies!

But maybe you could help me by telling me the best test request to make (if the new NS doesn't suggest doing any).
I am thinking a shunt flow study might be helpful now, as my symptoms of 5 years of over draining suddenly changed to frequent high pressure feelings, but sometimes, not often, & LATE in the day I can feel a bit of over draining start.

So obviously a cure for over draining is to have the setting set too high ;) :rolleyes
But I don't know that yet anyway.
Unfortunately my pre shunt symptoms are returning, but not full blown yet!

My memory and concentration get pretty darn bad now though :( Luckily I can "hyper focus" when I am determined to do something, well except when my brain sort of "freezes" on me. Then I can't process the words people are saying to me.

I had started to say my thoughts out loud to keep my concentration, even in front of my family, which REALLY irritated them. It was a very hard habit to break! So, effective as it was, I don't recommend doing it, even when alone, as that had been my plan :eek:

I just had my GP/PCP fax a request to a NS in a different city. I'm not looking forward to the travelling, but at least my sister and cousin live nearby and I can take the train in bad weather. If I get quite ill, I can still go to ER in Toronto area I'm sure. But I don't anticipate that happening since I'm still not as bad as I was pre-shunt. Meanwhile, I will try to determine which of the local hospitals is my best bet. Any ideas how I go about that?

Any more experiences to share?
I am sure I am not the only adult who is benefitting from this thread!

Thanks everyone,
Cathy

[Jordan]

I am pretty sure I read a post from someone who realized that, so in order to get taken seriously, she said she had vomited! I don't like to lie, sometimes you have to do what you have to do for "survival" !

That was me! :rolleyes: And I don't like to lie either but knowing how my hospital have been in the past (my local hospital without the neurology department) I had no choice. All they kept asking was 'have you vomited? Have you vomited?'. It's in my notes that even with severe high and low pressure I've never vomited but they ignored it. My ventricles collapsed that night while I was in ER but they still refused to do anything. In the end they said they'd only give me a CT scan if I became unconscious!! :eek: I pointed out to them that once I was unconscious I'd be in dangerous territory but they said I would be ok because I HADN'T FREAKIN' VOMITED!!! Sorry, but it still gets me mad today! I panicked because I felt so bad I seriously thought this might be it if they refused point blank to do anything or even get in touch with my NS, so i went to the bathroom with the help of my Mum and came back and said I'd vomited. Believe me at that point I was so ill and panicky I actually had no problem lying although I really hated the fact that I had to to get their attention. Bingo! CT scan done within half an hour, collapsed ventricles revealed, neurosurgeon contacted (who was FURIOUS it had been left so long when I was displaying all signs of shunt failure minus the vomiting) and an ambulance transfer to London, where I was operated on that night. In the past two shunt failures I've had this year my parents have driven me straight to the London hospital attached to the one where my NS is based and we've been admitted within minutes. Even though it's a two hour drive it saves time as they have all my scans on disk there and know me quite well! I haven't had to lie since. I don't really recommend it, but it's a good thing looking back I got things moving. Waiting until you're unconscious before they arrange a scan is just cutting it too fine!

[CathyE]

Hey Jordan! that's an important story. Could save a life! (maybe saved yours!)

That's why I said I don't like to lie, sometimes you have to do what you have to do for "survival" !


I would have done the same thing! And as sick as you were, even I probably could have been convincing (re my face usually gives it away!)

And I am also afraid that I will be too coherent to seem in trouble!
Once my adrenalin gets flowing, I get reserve energy, and pay for it later!

You know the "but you don't look sick" problem ! Well, last time, my family did tell me I was very pale! and I'm pale to start with!

Cathy

[jomama]

That was me! :rolleyes: And I don't like to lie either but knowing how my hospital have been in the past (my local hospital without the neurology department) I had no choice. All they kept asking was 'have you vomited? Have you vomited?'. It's in my notes that even with severe high and low pressure I've never vomited but they ignored it. My ventricles collapsed that night while I was in ER but they still refused to do anything. In the end they said they'd only give me a CT scan if I became unconscious!! :eek: I pointed out to them that once I was unconscious I'd be in dangerous territory but they said I would be ok because I HADN'T FREAKIN' VOMITED!!! Sorry, but it still gets me mad today! I panicked because I felt so bad I seriously thought this might be it if they refused point blank to do anything or even get in touch with my NS, so i went to the bathroom with the help of my Mum and came back and said I'd vomited. Believe me at that point I was so ill and panicky I actually had no problem lying although I really hated the fact that I had to to get their attention. Bingo! CT scan done within half an hour, collapsed ventricles revealed, neurosurgeon contacted (who was FURIOUS it had been left so long when I was displaying all signs of shunt failure minus the vomiting) and an ambulance transfer to London, where I was operated on that night. In the past two shunt failures I've had this year my parents have driven me straight to the London hospital attached to the one where my NS is based and we've been admitted within minutes. Even though it's a two hour drive it saves time as they have all my scans on disk there and know me quite well! I haven't had to lie since. I don't really recommend it, but it's a good thing looking back I got things moving. Waiting until you're unconscious before they arrange a scan is just cutting it too fine!


Jordan that's terrible! But too true :( I've had both sides of experience, from waiting forever and also now they seem to hurry me in most times, But the second failure I had was on a day I just had a mild headache all day, and my friends had to Beg me to go to ER when nothing made it go away throughout the day. I don't remember anything from that point on, I got in and then woke the next day to my NS saying that I was really lucky, that both my intake and outtake had stopped working, and they had to replace the shunt altogether. He said I was almost to the point of unconscious and that anytime I felt like that I needed to hurry to ER. I was like, 'but i just had a mild headache'

now that freaks me out sometimes, anytime i get a headache I try to lay down and hope it goes away, but in the back of my mind I know that's probably not smart.

[Nat Hyland]

you have to tell them which hospital to take you to. I was in the same situation in 2000. I lived just down the road from a small private hospital, and when the ambulance driver said he would take me there, I said "No, they won't be able to do anything for me there, they'll only have to transfer me if you take me there, take me to the Royal Melbourne, that's where my surgeon is". And that's where they took me.

You have to be quite firm in insisting on this, otherwise they WILL just take you to the closest hospital, whether or not they will be able to treat you there. If you are not able to tell them where to take you, have a letter written down that you can give them.

Nat.

[Lauren88]

I mainly agree with Nat - reception of potential problems in my experience depends on your history. When I had the first bad bout of shunt stuff that I can recall, I got the whole, but you don't look like someone with a shunt blockage etc etc, and many times after that but it was their experience of one problem after another that FINALLY made them do the d$mn tests - and I was right :rolleyes: I would definitely echo the idea that ambulances are the way to go though, even though I hate them (being backwards all the time exacerbates the dizziness I get.) You do get noticed and treated more seriously. I too like to be 'sure' that it's a shunt blockage though - with veins like mine I stay well away from doctors!

I think the difference between how kids and adults get treated (attitude as well as speed of treatment) is because kids (ideally) have parents there to speak up for them and say, 'my child needs x y and z' whereas as an adult you have to do that yourself and you're not always in a position to have the energy to repeat yourself, so you might be more likely to be brushed off.

In my experience my vision stuff has freaked NSs out more than the vomiting and as you guys know, VOMITING DOES NOT ALWAYS OCCUR, and even if someone has a history of vomiting with shunt blockage SYMPTOMS CAN CHANGE. Mine certainly did, I used to vomit repeatedly but when the shunt blocked in Sept I only vomited once and it was the vision stuff (nystagmus/squint, right eye eventually stopped reacting altogether) that made me, my mum and the NS think 'surgery NOW.'