Anyone had or know someone who has had a subtemporal decompression? - HotUKDeals
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Anyone had or know someone who has had a subtemporal decompression?

dmissy13 Avatar
6y, 2m agoPosted 6 years, 2 months ago
I have been given 2 options for this surgery and i can't decide between the 2.
one is to remove a section of skull the size of a tennis ball or remove a larger section of skull but leave it in floating so to speak.
I have too much of the fluid that surrounds the brain and it causes my brain to swell, i have 2 shunts to remove the extra fluid but there isn't enough room for them to work this will hopefully give a bit more room for the fluid to free flow around the shunts so they can drain it out without blocking.

I know this is an odd place to ask this but i have been on my regular medical forums but i find they wind each other up into big hypochondriacs.
dmissy13 Avatar
6y, 2m agoPosted 6 years, 2 months ago
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Comments/page:
#1
What is ur cause of hydrocephalus?
#2
would it not be safer for you to cut the larger section but leave it floating - i assume if you get a tennis ball sized chunk taken out and get hit on the head hard enough your screwed?
#3
I really think this is a discussion only for the experts.
With such decisions you really need to make sure that your surgeon spends the time to talk it through properly with you. If you would feel more comfortable talking to the nursing staff, that's what they are there for. To give you the time to ask as many questions as you want to make confident choices.
Surely these medical forums are going to make people more nervous and confused than anything else?
Good luck btw :)
#4
keluar
What is ur cause of hydrocephalus?


Idiopathic started 6 years ago

andymack
would it not be safer for you to cut the larger section but leave it floating - i assume if you get a tennis ball sized chunk taken out and get hit on the head hard enough your screwed?


yeah i have to be careful but i have to be careful now anyway

MAIA
I really think this is a discussion only for the experts.
With such decisions you really need to make sure that your surgeon spends the time to talk it through properly with you. If you would feel more comfortable talking to the nursing staff, that's what they are there for. To give you the time to ask as many questions as you want to make confident choices.
Surely these medical forums are going to make people more nervous and confused than anything else?
Good luck btw :)


I have talked it all through with my Neuro many times would be nice to get opinions from people who have had one of them most of the medical forums are full of people still having problems when people get results they often don't use the forums anymore.

its a toss up between the 2
banned#5
this is the kind of thing you talk about with friends/family not randoms on the internet
#6
i have discussed it with them as i have all my previous surgeries but as my post says i am looking for someone who has experience of this who is not on the medical forums. believe me i am not just asking random strangers to tell me what to do i am just looking for more opinions
banned#7
dmissy13
i have discussed it with them as i have all my previous surgeries but as my post says i am looking for someone who has experience of this who is not on the medical forums. believe me i am not just asking random strangers to tell me what to do i am just looking for more opinions


Just report the troll.

Puberty is a difficult time for some member's.

Hope you feel better soon x x
banned#8
DLM
dmissy13
i have discussed it with them as i have all my previous surgeries but as my post says i am looking for someone who has experience of this who is not on the medical forums. believe me i am not just asking random strangers to tell me what to do i am just looking for more opinions


Just report the troll.

Puberty is a difficult time for some member's.

Hope you feel better soon x x

that's probably aimed at me
a) it's not trolling, you might want to google the word "troll" and find out what it actually means
b) i'm 25
#9
Hope all goes well whatever your choice xxx good luck!
#10
I've no idea, but it sounds frightening. Hope you settle on a decision soon, and get it sorted. :(
#11
thanks all x
1 Like #12
Had a quick look around and this is all I could find.

http://pa-in.facebook.com/topic.php?uid=33336654400&topic=10112

http://pa-in.facebook.com/topic.php?uid=33336654400&topic=10112


I wonder if HUKD is a big enought pool?

Good luck anyway.
#13
Plum
Had a quick look around and this is all I could find.


http://pa-in.facebook.com/topic.php?uid=33336654400&topic=10112



http://pa-in.facebook.com/topic.php?uid=33336654400&topic=10112



I wonder if HUKD is a big enought pool?

Good luck anyway.


thanks i have seen this but appreciate the time you took.

HUKD is a very small pool but i will try them all lol

Edited By: dmissy13 on Sep 08, 2010 14:20: .
#14
Is there no help group through the hospital?
#15
yeah been to them all over the years full of moaning old wingers in my experience i'd rather just get on with it rather than feel sorry for myself which is easy to do in that sort of company. i was hoping on the off chance to find someone with experience of this but isn't in the groups or on the forums i have been down that route already
banned#16
Toss a coin and let it decide which operation.
#17
DLM
Toss a coin and let it decide which operation.


it will probably come to that lol
banned 1 Like #18
dmissy13
DLM
Toss a coin and let it decide which operation.


it will probably come to that lol


The only thing I could think of doing :D

Good luck ;)
1 Like #19
I dont know anything at all about the condition you refer to.
But what I would do is research to ensure I was being treated by the best possible team, even if it meant travelling. Not all hospitals and doctors are the same.
If you are happy with your team I would listen to their advice.

Good luck in whatever you decide.

Edited By: WoolyM on Sep 08, 2010 18:05: edit
#20
thanks i was being treated by the Neurosurgeons in Oxford and they were really poop so i moved to Derbyshire so i could been seen by Mr McMullen in Sheffield he has the best reputation and has been amazing he operated on me 2 weeks after 1st seeing him agreeing things were not moving in Oxford and this will be the 4th operation with him in 2 years. He has been totally honest about the results etc and its not a common operation like my previous shunt operations i just need to decide between the 2 theres not much in it. appreciate your advice and i agree finding the right team is best for anyone with a serious medical condition i dread to think how bad i would be if i hadn't moved.
1 Like #21
I have worked in neurosurgery for 6 months. In general, leaving the skull in is favorable, However, it all depends on how bad the hydrocephalus is. There is a risk of bone ossification which may affect the effectiveness of relieving pressure. A friend of mine ( neurosurgeon ) is paying me a visit this weekend, I will have a chat with her and get back to you.
1 Like #22
Also, try google craniotomy and cranionectomy
#23
thanks, i know all the details from the medical side and have googled everything really just looking for inside knowledge from someone who has had it, find the pros and cons the surgeons don't know
1 Like #24
DaveLister
this is the kind of thing you talk about with friends/family not randoms on the internet


Quite frankly, it's up to the OP who they decide to discuss it with and none of your business. Your input was 100% unnecessary, which is probably why you got called a troll.

OP, whatever decision you make, good luck and I hope it all goes well.
#25
with the removal there is a strong muscle over the gap and its almost unheard of someone having an accident to cause damage but if anyone could fall on a spike sideways so it hits that spot it would be me lol

just been sent this on facebook i don't know how i would cope with this as a child http://www.ellesmereportpioneer.co.uk/ellesmere-port-news/local-ellesmere-port-news/2010/09/08/ellesmere-port-father-of-eight-year-old-girl-with-incurable-neurological-condition-fights-to-raise-the-profile-of-rare-disorder-55940-27219930/
#26
thank you but either my next life will be a breeze or i was a complete b**ch in my last life and i deserve it lol
1 Like #27
Personally I would look here Clinical Excellence Awards for indications of doctors or hospitals who were held in high esteem in any particular field. Yours is a particular specialist field.
It sounds as though you are happy with your team. Although they are questions that you may not really want answers to, I would be wondering about the people performing the roles. How many times they had performed it before and sucess rates.
At the back of my mind would always be the option to do nothing, whilst being aware of what that meant.
#28
WoolyM
Personally I would look here Clinical Excellence Awards for indications of doctors or hospitals who were held in high esteem in any particular field. Yours is a particular specialist field.
It sounds as though you are happy with your team. Although they are questions that you may not really want answers to, I would be wondering about the people performing the roles. How many times they had performed it before and sucess rates.
At the back of my mind would always be the option to do nothing, whilst being aware of what that meant.


i know all of that, the success rates by my team and nationally etc this is my 5th Neurosurgery there is nothing i don't want to hear or haven't heard i am so used to it the thought of brain surgery doesn't phase me i look forward to it because its a chance of some relief if it works. the only thing i am missing is getting info from people who have had it done to tell me things only they would know and on the medical site i find them all to get so moany all the time its like an episode of eastenders, all drama so thought it was worth a shot trying here and other forums i use. appreciate the advise though from everyone xxx
#29
For me, I would leave the skull in. To be honest, **** happens and I would not like to part with any of my body. Skull bone has many other purposes..
I am surprise your bilateral shunt is not quick enough to drain CSF.
#30
my VA shunt blocks straight away from lack of room and my LP shunt doesn't drain enough
#31
I have decided to go with the smaller section of skull being completely removed. thank you for everyones help here and via pm.
banned#32
When do you have the operation?
#33
dmissy13
I have decided to go with the smaller section of skull being completely removed.

Best of luck to you. Hope you feel better soon.








Edited By: Marina on Sep 24, 2010 11:38: .....
#34
thanks i go in a week on Sunday and i can't wait i'm like a kid before xmas lol
banned#35
dmissy13
thanks i go in a week on Sunday and i can't wait i'm like a kid before xmas lol


Hope you feel 10 years younger after the op.

Good luck x x
#36
Surgery got cancelled for emergencies hopefully re-booked soon
banned#37
dmissy13
Surgery got cancelled for emergencies hopefully re-booked soon


Oh no!

Have you had a new appointment yet?
#38
Had my surgery yesterday i went for the smaller section complete removal thanks for all the messages people has sent all is good and will haopeful have signs its working soon fingers crossed if not i will have one the other side
banned#39
Get well soon x x

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