only just come home! was rushed back in on the 12 Oct with suspected chemical meningitis and a csf leak! had to have another dura graft repair for another pseudomeningocele!!!! the new graft that they had put in on the 3rd Oct had torn away and another pseudo had formed,that was what was causing all the pain in my head.I knew something was wrong,felt great for 6 days after the op then started to deteriate rapid,the pain was awful.Had to re operate on the 17th Oct but this time they put in a lumbar brain in for 3 days to allow the brain time to heal.When they removed the lumbar I had a terrible low pressure headache,it had left a hole in the lumbar canal so I felt pretty much the same in which I had before the op! but its getting better.Had an MRI before I came home which showed chiari malformation?!!! and low lying cerberllar tonsils,which I dont get! Is this normal after having a decompression surgery? I thought the tonsils were suppose to move upwards after the surgery? or could the pseudo have caused the tonsils to desend again? would be very grateful for any advice on this,Im seeing the NL on monday so want to be in the know,
I am sorry that I have no experience with what you are going through,,,,I jsut want you to know that you are in thought and prayer....my heart breaks for you..but it will get resolved..hard to believe that now and I HATE when people tell me that!!! Though it is true...but I , personally, have a hard time looking forward to the future when I feel so awwul.
We all get it here!!! I am sure someone who knows a lot more than I will write and give you their experience.
Hang in there, ok> You are not alone...Miles away , folks here are praying for you.
Oh no :(. Things will only get better from here! I wish I had a magic wand to wave over your head and make you well…after all you’ve been through you deserve a headache free life. Our NS cauterized the cerebral tonsils so in her last MRI there was no herniation. Just the usual post decompression changes you would expect along with our best buddy the pseudo.
Thanks everyone for your lovely messages,means so much.Thats what I thought Jo! I had mine cauterized too but the MRI showed no change after the decompression,its still 20mm! just dont understand it at all.Only thing I can think is after having the first pseudo and leak for 11 mths,its caused the tonsils to herniate downwards again? because the MRI I had in march this year didnt show it yet the one in August has so maybe its happened between March to August if that makes any sense at all?
I only had mine in for 3 days but yes they were very wary.I had to lie flat an it I wanted to stand up they would shut it off.They drained too much one night and my god did I know about it! felt horrendous and had severe vomitig too.Had the lumbar drain removed last saturday so it isnt that thats caused the tonsils to slump again.This happened between March 2012 to August,I think its the first pseudo and the low pressure I had and the lack of fluid around the brain thats caused it to drag down,what do you think?.How are you doing? I really hope you are doing well.
Denise x
Susan J said:
Denise
I had the lumbar drain when I had my repair. Where they very cautious about when you could move and your body position with the lumbar drain? There is a risk of the lumbar drain pulling down and causing a herniation. I can't remember so I might have this backwards, but when the drain was open I couldn't sit up ( I might have this backwards). Did they check your opening pressures? I had to have my drain for 5 days and on the 3rd day they check the pressure all day long to make sure there were no pressure spikes that could be putting pressure on the new patch.
I am so sorry. It must feel like a never ending nightmare. I will be keeping you in my throughts and prayers. Stay strong!
