back from the neurosurgeon, and not much further forward, but a plan is forming.
he agrees that i could have a chiari problem as there is brain through the hole and it is tight, but by no means the worst hes seen.
however he has greater concerns.
my transverse sinus vein on the right side does not extend to join the vein than comes down from the top, that only joins the left one. this is why ive been incorrectly diagnosed with a venous sinus thrombosis (twice!), the other veins in my head seem more pronouced (maybe to compensate), but he couldnt easily tell which my jugular vein was.
he also asked about my hypermobility and other things and is very concerned about something called marfan syndrome, and is refering me to a rumatologist (sp) and for an angiogram as ive been having chest pains off and on for the last year and put it down to stress (which is probably all it is).
he is going to present everything to his colleagues on monday when they meet to discuss interesting cases, and will call me afterwards with the plan of attack. if everything else is clear, chiari still fits and he'll do the decrompression.
but once more, fingers crossed its nothing more sinister.
ps. anyone know much about marfan syndrome, as he scared me a bit about the heart side of things!
no, ive not had a cine mri. he did say they may put a pressure sensor under my skull for a couple of days to monitor pressure changes etc.
It's great the NS is forming a Medical Plan and consulting with other Specialists. You will get much better information & treatment. I had team of 8 surgeons with different specialties for my 16 hour CM & C Spine Surgeries. This is very good even though I am sure you are worried.
Remember we are her for you,
we're just very worried. my and my mum especially. scared about the threat of marfan syndrome and its effects on the heart, scared about the quality of life depending on the diagnosis. scared of possible complications of chiari surgery. how long will this take? am i going to loose my job? my hobbies? my life?
im keeping positive and upbeat, more for their benefit than mine at the moment.
im going to have a good week, be more painfree, more functional, get some jobs done round the house and go back to work on the 17th to see how i cope (thats if i dont get a phone call from the hospital in the meantime)
thanks for being here
I got a call at 9pm last night from the neurosurgeon, he's looked at the scans with a radiographer and decided he doesnt need to an angiogram of the vessels in my head. So he's sending me off to the rumatologist as he's convinced ive got marfans syndrome and wants that checked out before he does anything else. I'm frustrated, as ive been looking into marfans, and i really don't think i fit the bill, so it feels like wasting more time, when i need to get better and get back to work before i get the sack.
Generally i am feeling better in the last few days, going to go to work on monday and see what happens, as it'll be a quiet week leading up to Christmas anyway.
Thanks for the support.