Update 5/18/11

well i have been in hospital since monday evening (5/16/11) had really bad migraine severe dizziness and pressure in head and so i came to er to ensure no bleed. there was no bleed however the worst thing happened. i had a ct scan to check for bleed didnt find any and afterwards they decided to do a lumbar puncture(spinal tap) so that they could see if i had any bleeding in my spinal fluid. Right after the tap i was able to move my legs cross 'em and lift them and everything. since i had to lie on my back for an hour i decided to go to sleep. 30 mins later i woke up and could not lift my legs. i still feel them just fine. they pinch me and it hurts but i cant lift them. had another cat scan with contrast done on spine and head and nothing was found. was admitted yesterday morning. docs think the lumbar puncture might have caused issues but they arent sure if its that or the avm. they really are clueless because i had physical therapy today and i still have limited motion in my legs. had mri and mra done of my spine and legs to see what is going on. they really dont know what is going on and neither do i. its really scary because they say that the avm hasn’t ruptured but i got a call from the neurosurgeon yesterday saying that my avm is a grade 3 and inoperable. he also said that i have an 80% chance of it rupturing and bleeding in the next few months. so i dont know what they going to do if it ruptures since its “inoperable” its in the optic chiasm and the pituitary stalk but because its so deep deep in center of brain they cant do anything bout it. so if it ruptures what will they do since they cant do anything now? just very frustrated right now and in so much pain between the head and my legs i am ready to just scream :frowning: will update more later.

Patrice, don’t loose hope. Ask about Proton beam therapy? I don’t know whether it is possible, but you never know. You are in my thoughts.

Hi Patrice. I will be PRAYING for you!!!

I will keep you in my prayers!!!

Hi Patrice… firstly remember, we your friends, are here for you when you need us, and at a time like this is sounds like you need some support. The doctos should of advised you of the complications that can occur from a spinal tap, sometimes they can hit a nerve and causes a similar sensation - however to know that you can feel your legs and they aren’t in any pain (?) than you still have nerve stimulation - it could be more psychological from stress? are you going to have more tests done? … as for the avm being inoperable, there are many survivors on here who are in a similar position, some have already had bleeds and still haven’t been able to have any operation, sometimes the neurosurgeons say that unless the risk outweighs the benefits then they will not touch it (i.e if it bleeds and the risks are less than benefits then normally they will operate then.) as for the doctor knowing that the avm is going to burst in the next few months, i am not sure how they can put this kind of time frame on it and to worry you so much. When I was diagnosed I was told I would be dead before I was 30, they told me they wouldn’t do anything, they wouldn’t touch it at all, that was just one opinion, i carried on to have 5 opinions all saying the same (not that i would be dead, that was a bit harsh) but that there was no operation they could do… my 6th opinion said YES we can do something, that he would help me…so I had gamma knife radiation to shrink it, although not completely gone, at least something has been done about it. encourage you to seek as many opinions as you can and go with what you feel is best. :slight_smile: xxx keep us updated for sure.

Hi Patrice,

I'm so sorry you're having these problems and that there have been no answers for why yet.

How is the PT going? I know you just started it, but have you been able to see any progress yet?

I know the risk of a rupture is so scary. Since your AVM is inoperable, have your doctors discussed whether embolization might be an option? I have a feeling yours is in a place where gamma knife wouldn't be possible, but have they mentioned that?

I'm glad you turned to this site for support, and I also hope that you've got someone there with you to offer support and encouragement too.

Please keep us posted on how things are going for you and whether or not any cause for your current problems are found.

Take good care,


Hi Patrice, I am so sorry you are going though this, it sounds really bad, maybe another surgeon or something else can be done. What about Gramma Knife or something like that, maybe just a second opinion might be a good idea, every surgeon thinks something different.

I hope you are feeling better soon, best of luck to you

Stay strong and take care


Hi Patrice, how about another opinion and then another and another if needed, do not give up

Stay strong and take care