Re: 12 yr old loss of equilibrium & short-term memory, severe headaches,
sorry for what you are having to go thru with your son,i know its hard.have they ever actually done any MRIs on his spinal column during all the testing he has had done?espescially the c spine area?another thing i wanted to ask was do you have ALL of his medical info in your possession?like all rad reports all the hosp records and medical info fromevery doc he has seen so far?if not,you need to start making some calls to every place that has actually seen him for anything and requesting all the records for your own 'medical file' that you would always have in your possession.believe me,docs do not always tell you everything that is even in any given rad report or becasue they really don;t understand a certain finding,will just blow it off as not important when it actually is very important.it all comes down to the actual overall knowledge and experience of any specialist that will have them see something as important or not important.i went thru this with me and with my son when he was going thru liver failure and then actually suffered a severe head/brain injury a few years after that.but getting ALL of his info together then going thru things yourself(with the help of a good medical dictionary or website) really is what you need to do at this point.write down any questions you have about certain findings or anything else you have the right to actually know about.the doc may not like it but you DO have a right to have all of this info in your possession.this was how i figured out many different things that i was neevr actually told about because some neurosurgeon didn't think it mattered or was not actually important but believe me,it was VERY important to my condition at the time.
your sons types of symptoms could be brain related or spinal related.but if they have never actually bothered to check out even the c spine at this point,they really need to go there.some findings cannot be really seen unless that MRI,with contrast(just a better way)could find it.this is just another area that needs to be checked out from top to bottom.becasue the actual spinal cord itself is what actually carries all info too and from the brain,it can be the possible casue of many issues even down to balance and gait.mine was severely affected becasue of damage to the spinal tract that governs it during my spinal cord surgery that also damaged a host of other very important areas in there.it just needs to be checked out or at least ruled out at this point since they don;t seem to really know yet just where the symptoms are stemming from.just another possibility that could casue some pretty dramatic type symptoms if something actually is affecting the cord itself.just the fact that he cannot walk and is currently sitting in a wheelchair alone would indicate that need to do the full spinal MRI.
but DO get started on just gathering up ALL his medical records.you really do need this stuff with what you are dealing with,you will be very glad at some point that you went thru the effort to just obtain them.keep them all in some type of expandable folder and just bring it with you to every appt.or if the need should arise for a trip to the ER,all you have to do s grab that folder and go,you know what i mean?all of his very important info would be all right there for the docs to see.it saves a heck of alot of time and gives the docs a 'baseline' of tests to work from.it just makes alot of things soo much easier,believe me.
i do wish you lots of luck with this and hope they can find out very soon what is causing all of this in your son.please keep me posted on how things are going,K?marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.