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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


i am so very sorry on the loss of your child. i cannot even imagine the pain you are going thru and to have the other Dxed with what appears to be a similar situation has to be hard. you have me deepest sympathies.

the good thing here is that you DID have a scan done now. this info really is important in making certain this child can possibly get this treated or at least monitored. i do get the impression that there is actually at least some level of small possible aneurysm but it is under 3mms? it sounds like it from the way the report was actually written,at least to me. i had/have a (approx about 6mms)coiled aneurysm sitting up against my brain stem that thankfully was coilable. not all are. i had the fortune of having an amazing neurosurgeon who simply sent me for an MRA based upon some changes in my spinal cord injury facial symptoms and feeling heat running thru the back of my head. i also have a congenital predisposistion for developing vascular malformations from an actual kidney disease that i had passed on to me that just created naturally weaker blood vessels. that MRA was a true life saver for me totally. my particular aneurysm never showed up on the MRI i had just had done previously to the MRA only becasue it was located in the bend of an artery up there,so that MRA and my NS really saved me from possible disaster down the road. has this son actually had an angiogram done yet? that also would be done by the interventional neurorad too. it will be needed at some point to better define things in that problem area.

one BIG thing here is the type of doc you need to see for an eval/consult? that would be an interventional neuroradiologist? these are the trouble shooters of anything vascular within a persons brain(and spinal cords). there may be something that can be done from this type of doc that by the way,is all done just going thru the main artery in the leg/groin area,the femoral. no actual cutting into the head or brain,its all done by snaking the tools needed thru the arteries. amazing stuff these guys do. really amazing.seeing the neurorad and also getting to a really good neurosurgeon who has alot of experience in vascular malformations in the brain and spinal cord would be your best bets right now for the best possible dx/prognosis and possible treatments availiable. and DO go to any university type teaching hospital if at all possible. they are just more used to seeing the more obscure types of conditions,and also treating them.

i had been born with another vascular malformation that was actually IN my spinal cord up in the c spine area. i went to three seperate neurosuregons to just find out what this actually ment to me,with three different overall opinions,gee that helped. it wasn't til NS number three that i saw at the U of MN where i live that i really got all of the answers as to what this actually ment for me and what really needed to be done. they just see and do alot of treatments/surgeries at these types of facilitys and are also more on the cutting edge of all things that are new that no other surgeons are doing yet.i just really think,considering what already occured with one child and the other actually appearing to have what the other passed away from,that the university would really be your best bet right now for the best treatments availiable. just an FYI here for you,but it wouldn;t hurt for you and your hubby to at the very least,have yourelves evaluated since there is a possibility that this congenital defect could have been passed on by at least one of you,you know what i mean? i am not trying to scare you here,just that possibility would actually be there in a congenital predisposed type of situation,at least to some degree. it may not be the exact same type of thing,since some congenitally pased on types of conditions can kind of mutate when they pass down into the children. this occured with the particular kidney disease that i passed on to my youngest son. it placed him in liver failure by a mutated gene(it gave him the same kidney disease but also created a liver disease too) and we didn;t even have a clue that he was even sick,or that we actually had this congemital kidney disease in our family. very very scarey there. we almost lost him, a few different times. you two just need to be evaluated with at least an MRI/MRA with contrast. there just could be something there that you don;t yet know about,believe me. it really is crazy with congenitally created/passed on conditions. i did not even find out that i had had this particular kidney disease my whole life til my son became gravely ill and we found out when we were all tested for it with ultrasound. i was actually already 40 years old at that time. didn;t have a clue. my sister also was found to have it as well. this is just how some congenital stuff can be.

your main priority right now is to get this son to the best places for eval and consult on what this means and what can be done for it to minimize the overall risks for him now and in the future. luckily you found this out now,that is at least one good thing here in a really awful situation you are dealing with. finding these types of things out as early as possible gives the best overall shot at either ridding it completely or at least minimizing the overall risks to your child. the universitys,like i said,are the really best places for this type of thing,but if you do not actually live within at least a couple hours drive from one,ask around,or even call the most local U you have around that is a teaching hospital for the best possible referrals to a more local one around you. they would know the docs who have more specialized knowledge of your childs condition. and DO ask your ins co which neurosurgeons and neurorads are within your network and then call them and actually ask them what they specialize in and how much overall experience do they have in treating what your son has. you DO have the right to ask them and they do have to tell you. you want experience here not somone who has either never actually dealt with this or has very limited knowledge of this. experience and overall knowledge really are the keys in getting the best possible treatment/eval for your child at this point.

again,i am so very very sorry for your loss and what you are having to deal with now. just search out the most experienced medical people who would be the best and have that knowledge you so badly need right now. please keep me posted on how things are going,i really DO want to know,K? hang in there hon,marcia





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