jadiee-x
03-10-2009, 06:37 AM
So,
yes this is ANOTHER topic I've created here. I've posted a few posts on facebook, on Hydrocephalus and shunt groups about this and quite a few people have got back to me surprising saying they've experienced it and queried it, with different outcomes.
So heres the thing.
As many of you know from previous posts, I have an arachnoid cyst and had a VP shunt fitted at 13 months, revised at 4 years and then also at 16 years.
It was revised at 16 due to displaying chronic shunt malfunction shortly after being inserted with an ICP monitor.
Between the time of the insertion of 'the bolt' I experienced this horrible gripping pain which felt like someone was squeezing my shunt area as hard as they could with hands made from pins. This was the first time i had EVER experienced this.
Well i slowly went downhill with the symptoms and eventually into a coma. Thats when i was revised fully.
My valve was changed form a low pressure to a high pressure in that operation.
Then the story goes on, in and out of hospital with other distal problems and tests associating pain i got in my abdomen. A assistant NS informed us that i had a small brainbleed when i had my shunt revised before. Whether this was due to ICP bolt or the shunt malfunctioning, we havent been told.
During this time I got the occasional gripping pain, about once every 2 weeks, once a week maybe.
Then began getting slightly more frequent, up to about 3/4 times a week.
Well on 27th Feb, I was converted to a VA shunt to stop the abdominal pain.
I told my NS's assistant about the problems Ive faced since this shunt was put in which includes:
Eyes blacking out more than ever when rising (for a few seconds).
Headaches when i've been upright for quite a while, like when out shopping, traveling, at college.
A more imminent blacking out at times, where i feel very ill and shaky and the need to lie down to recover.
The gripping pain in my head.
&& of course at the time, the abdominal pain.
He planned a full revision because he suspected over drainage but had to go to my NS to get his permission, but after waking up from the operation, i had just been distally converted and still had the same shunt.
I still get all these symptoms, minus the abdominal pain. If anything, the pain in my head has got more intense and is more now like a thumping, but its pretty fierce, literally lasts a second or two, like someones squeezing it then lets go. But a few days ago, say 3 days i think it was, i was out shopping and this pain hit me atleast 30 times, and then also the next day i had it about that amount too, yesterday i got it alot, not quite as much. I must of had this pain almost a 100 times in the past week now.
Has anyone got any ideas as to what this may be?
From facebook groups, people have got back to me about their own experinces, saying:
Infection
Overdrainage
Nerves
Bleeding etc...
I see my NS at the end of this month for the usual post operation clinic appointment, should i contact him sooner and inform him that my head pain has been more frequent? or should i leave this until i see him?
yes this is ANOTHER topic I've created here. I've posted a few posts on facebook, on Hydrocephalus and shunt groups about this and quite a few people have got back to me surprising saying they've experienced it and queried it, with different outcomes.
So heres the thing.
As many of you know from previous posts, I have an arachnoid cyst and had a VP shunt fitted at 13 months, revised at 4 years and then also at 16 years.
It was revised at 16 due to displaying chronic shunt malfunction shortly after being inserted with an ICP monitor.
Between the time of the insertion of 'the bolt' I experienced this horrible gripping pain which felt like someone was squeezing my shunt area as hard as they could with hands made from pins. This was the first time i had EVER experienced this.
Well i slowly went downhill with the symptoms and eventually into a coma. Thats when i was revised fully.
My valve was changed form a low pressure to a high pressure in that operation.
Then the story goes on, in and out of hospital with other distal problems and tests associating pain i got in my abdomen. A assistant NS informed us that i had a small brainbleed when i had my shunt revised before. Whether this was due to ICP bolt or the shunt malfunctioning, we havent been told.
During this time I got the occasional gripping pain, about once every 2 weeks, once a week maybe.
Then began getting slightly more frequent, up to about 3/4 times a week.
Well on 27th Feb, I was converted to a VA shunt to stop the abdominal pain.
I told my NS's assistant about the problems Ive faced since this shunt was put in which includes:
Eyes blacking out more than ever when rising (for a few seconds).
Headaches when i've been upright for quite a while, like when out shopping, traveling, at college.
A more imminent blacking out at times, where i feel very ill and shaky and the need to lie down to recover.
The gripping pain in my head.
&& of course at the time, the abdominal pain.
He planned a full revision because he suspected over drainage but had to go to my NS to get his permission, but after waking up from the operation, i had just been distally converted and still had the same shunt.
I still get all these symptoms, minus the abdominal pain. If anything, the pain in my head has got more intense and is more now like a thumping, but its pretty fierce, literally lasts a second or two, like someones squeezing it then lets go. But a few days ago, say 3 days i think it was, i was out shopping and this pain hit me atleast 30 times, and then also the next day i had it about that amount too, yesterday i got it alot, not quite as much. I must of had this pain almost a 100 times in the past week now.
Has anyone got any ideas as to what this may be?
From facebook groups, people have got back to me about their own experinces, saying:
Infection
Overdrainage
Nerves
Bleeding etc...
I see my NS at the end of this month for the usual post operation clinic appointment, should i contact him sooner and inform him that my head pain has been more frequent? or should i leave this until i see him?