Cerebral Venogram

[Defective]

hey all,
so while i've been less active on here i've been dealing with the fact i nearly went blind, may have to have a stent put in my brain and ohh a 4 day holiday in the RAH while scared out my wits about having a needle poked in between my vertebrae just so they can tell me i broke the hospital record for intracranial pressure (adult is 12-15...mine was 65 and they drained 55cm of fluid) asside from the fact i am overweight i'm perfectly healthy in every other way; blood presure, cholesterol, blood sugers.


so now they think there's a blockage and want to do the brain version of a angiogram called a 'cerebral venogram' and no the radio-opque dye is not veno!!!! just wondering if anyone on here also has rasied intracranial pressure (intracranial hypertension) and has had this investigation.? i want to be prepared, it sounds like they may also be sedating me as well!!!

 

[CrystalMoon]

I can offer nothing except for support and well wishes Chikki.... you certainly have had a time of it! I will be thinking of you
Crystal xxx

 

[Renenet]

I can offer nothing except for support and well wishes Chikki.... you certainly have had a time of it! I will be thinking of you
Crystal xxx

Same here, Lambert. I hope someone can help you.

 

[SteveNT]

Good luck cobber! Dont lose your humour and you'll get through it. Carry on champ.

 

[Smithers]

I'd be asking for the maximum dose of sedatives and maybe one extra just to make sure. Good luck Darl

 

[abnrmal91]

I had an extradural haematoma (blood clot between brain and skull) in 2003. Don't know what the pressure got to But the blood clot was the size of my fist. It had pushed my brain from it's mid line position and toward the back of the skull. About a 6hr operation 42 stiches and 4 titanium plates later. All good but left with 11 1/2 inch scar. I will give you a tip don't let a nuero surgeon give you a haircut. Not good. But the whole thing makes for an interesting CT scan lol. Hope everything goes well, best of luck.

 

[junglepython2]

Do they think you have Pseudotumour Cerebri?

 

[Squinty]

We have just been through a horrific experience as a family. On the 10th of May my 27 year old step sister had an unknown AVM in her brain rupture. She had t gone to work as had a huge headache and knew something was wrong so called 000. While she was on the phone it ruptured and she was screaming down the phone 'Help me my brain just exploded!'They had to break into her house and get her out as she was unconscious when the ambulance arrived. They operated on her for 7 a d a half hours but couldn't stop the bleeding so put her in a coma and in ICU. 2 hours later the pressure in her brain was getting up to 65 - 70 so they put a drain in her brain and out her skull to relieve the pressure. It dropped down to 20 - 30 bit would spike up to 40 - 50 at times. They told us the next 72 hours are crucial and if she doesn't improve she won't make it. They warned that the higher the pressure the more likey case extreme brain damage was being caused. On Friday the 13th of May she had shown no signs of improvement. The doctors said she wasn't improving at all and suspect she would be brain dead by now. Her parents signed a DNR and an organ donation form and turned off all life support to let her go. They said it could take up to 24 hours to pronounce her brain dead. 2 hours later I got a phone call from my mum. Something was going on. Her signs had not dropped as they had suspected and the doctors gave her one last MRI. The MRI had shown the bleeding had stopped and they decided to operate to try and remove the AVM. The surgery went well and they put her back in a coma. The doctors started to feel much more positive at this stage. But did say that because of the high brain pressures she had suffered due to arterial blood pumping into capillaries that she will most likely have quite severe retardation. She kept improving and slowly they weaned her off the sedation. When she was in her half comatose state she whispered to a Japanese nurse in Japanese. She said 'hello my name is Carina. Thankyou for helping me'. We were shocked and estatic. Carina had studied Japanese for her whole schooling life. The light was starting to shine brighter. She went home from hospital 3 weeks ago. She is totally herself. Having a conversation is like nothing ever happened. It's a miracle. She does have a few small issues that they said will get better in due time. Her vision is blurry and they took her licence away. But it is improving every day. Her left side is a bit unco and lags a bit but the rehab and her determination is helping with that. Her quality of life is fine. Living back independently with her housemate. It's amazing. She went back and had her skull put back in on Thursday. I haven't seen her yet but heard it went well and she isn't doing too bad. She said the pain is terrible and wished they put her in a coma till it repaired but is happy cause they stretched the skin so much she got a free facelift! Sorry for the long post. I know it's not totally related to your issue except the high pressure in the brain. I'm sure you will be fine. They know what they are doing.

 

[abnrmal91]

She sounds very lucky squinty. Good to hear it had a happy ending.

 

[Squinty]

She sounds very lucky squinty. Good to hear it had a happy ending.

The doctors are calling it a miracle and have/are writing a medical journal on her.

 

[Defective]

Do they think you have Pseudotumour Cerebri?

they don't think, they know! hearing your pulse in your ears, double and blurred vision and having migraines and headaches everyday moreso in the morning than at night for the past 2-3yrs; as the pressure built up my optic discs and optic nerves have been serverely effected so i all but have tunnel vision now. it's also very rarely called 'Pseudotumour Cerebri' anymore it's more known as 'Idiopathic Intracranial Hypertension' or IIH but as there is a possible cause for mine it's just 'Intracranial Hypertension' or IH....3 people get diagnosed with it every year and it rarely affects men, can affect kids but mostly women aged between 20-50yrs, overweight or obese and on oral contraceptive, but my neurologist has seen it happen to supermodel thin women so yeah....

@ Squinty: i have the ambulance, my neurologists mobile number, the royal adelaide Emergency departments number all programmed into my phone as this kind of pain happened to me....think harry potter and the philosphers stone with the troll dragging its club around. i could barely stand let alone carry anything and all i wanted to do was sleep. i feel her pain. i'm scared witless about this procedure mainly because of how much time i need to be still for afterwards so maybe they can sedate me for that to....HELL just whack me over the head

LOL so got a call yesterday and they want me to go in for a cerebral Venogram in i think a MRI (love them) so this will prove interesting since my GP was against giving me a CT order coz of radiation and now i get the stuff injected into my veins....twice! my ashes are gonna glow when i'm dead!!!! Hope SA Brain Bank has a good time although i'm considering letting RAH have my brain when i croak so they can be like 'ohhhhh so thats the brain...rightio'

Just call me Dtwitchefect!

 

[beany0793]

Hi, I have the exact same symptoms and condition by the sounds of it and am waiting to have a cerebral venogram and lumbar puncture to check my pressure again because every time they drain my csf(have peritoneal shunt but poss not working anymore)fluid its double the amount it should be 35 last time and 45 6 months before, mine is diagnosed as I.I.H originally B.I.H(prefer the sound of that one!) im 34 female overweight but healthy, blood pressure is generally normal but have to wear glasses as csf fluid pressure damaged y optic nerves. when is your procedure being done? the don't rush in England to get these sorts of things done unless your half dead already!!

 

[Defective]

Hey beany, i had mine done in september. and 35 is still far to high for the pressures in your skull, it should be between 7-10 mm/cm H2O.
only thing i'll say is be prepared for a sore head and slight shoulder tip pain after...and sleep, get lots of it!
PM me if you want to know anything more

 

[Chris1]

wow, amazing story squinty!!

best of luck with everything Defective and Beany!!