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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Personally,I would see another neurosurgeon for a second opinion,I have never relied solely on one NSs opinion for any of my over all wierdness that has happened inside my head and my spinal cord.If I had went with my very first NSs advice,I would probably be lying in a nursing home and paralyzed from the chest down due to the type of unnessescary type of radical surgery he wanted to do on my cavernoma that had been lurking inside of my spinal cord.

I actually sought out three opinions before consenting or doing anything with it as the first two NSs had totally opposite views only according to their particular experience and overall knowledge of my actual condition.I basically needed that 'tie breaker".and am sooo relieved that I got that third one (this was at the university of MN with the head of neurosuregry who had over thirty years of experience and tons of experience with cavernomas inside the brain and the cord).he told me things that none of the first two had a clue about and was able to offer me a totally different appraoch to removing the cav from my cord.the only reason I went this invasive to have it removed was only because it had already had two bleeds and was most likely going to do it again,probably within a years time from the second bleed.it was that or wait til it bled again and become pretty much instantly paralyzed from the chest on down.great choices.

but seeing a different doc,with your films,would be the best way to really see just how "serious' this really is for you and what risks you may be facing.I have found that when dealing with some NSs nurses,they really do NOT hold the same views about certain things as the actual NS does,this alone caused me some major problems and my NS was just shocked to find out that his trusty nurse had actually told me to do something that caused some major problems for me and my healing of a fusion.

i would first demand to actually see your real NS and not a PA.the PA would not possibly have the same level of overall knowledge that your NS does,its just not possible.you need to see your real doctor for this and no one else.I mean you went to see this particular doc in the first place and have every right to see this guy,geez.he IS your doc after all ya know?i really would demand to see him,have a real consult with HIM only and find out what you are actually dealing with here depending on HIS actual views and not what he may have just passed along to his PA to tell you.things have a way of changing from one person to another,you know/like that old game of telephone where what is stated at the beginning,seems to actually change after it gets passed along to someone else??plus,this PA couldn't possibly be able to fully answer all your possible questions regarding your condition.you hired the doc not his nurse or the pa.by the way,this doc is working for you,not the other way around.

i have been thru a ton of the most freaky bizarre off the wall bunch of Dx as well as my son.we both have been to and stayed in like every hospital within a 50 mile radius from where we live for a huge list of crap and i have had to deal with more flippin docs and specialists and other "so called medical professionals" and quite frankly,they just do not intimidate me anymore.i know my rights as a patient and that sometimes,in order to get the best possible care,you have to actually demand that people just do their freakin jobs.

Just see how long the wait would be in order to actually see your own doc or if he would possibly be popping into the appt that is set up with this pa.hopefully you will be seeing your actual doc at some point during your actual appt.if not ask them to have him be there and availiavble to answer all questions.you DO have this right when he IS your doc of record.once you have actually gotten this docs impression of your condition and all risks involved,move to another NS for that second opinion,you DO have a right to any second opinion on any condition and most insurance companies will normally pay for you to have one.mine actualy pain for the three i got way back when.you just need to let these people know that you are aware of your rights and they are not just going to blow you off like they do with alot of their other patients.you ARE your only advocate here and if you do not speak up for yourself and sometimes need to get a bit icky,well who is going to do that for you,ya know?just give them a call back and ask about whther or not your real doc will be popping in at all to your appt,if not,tell them you need him to at least step in for a few minutes for you to speak with.a Pa is not your own doc.in most of my specialist appts,i either see my own doc right away or I see his pa and then he comes in at the end so i can directly ask him any questions and he does his own little exam on whatever body part happens to be the body part du jour.please let me know how things go,K/ hang in there and stand your ground with these people.

Janet,i just have to say,wow.i cannot believe that you were actually born without a COW and had not even been aware of this til an MRI had been done.that just freaks me out,really.didn't you have any wierd symptoms or anything unusual going on without this main arterial structure iside your brain like that?thats just too freaky.i am fairly familiar with the COW only because i have an aneurysm just off of it in the L superior cerebellar artery.had to learn some stuff pretty darn quickly there ya know?so what does your actual arterial structure look like without that and how in the heck does your brain function normally without it?I mean obviously you have no mentation type of impairments or anything from this or you wouldn't be on here.so what are the 'consequences" to you without actually having a COW?does this cause a reduced blood flow to any areas in your brain?I am sorry to be so nosey its just kind of freaky.and I thought MY vascular issue were bizarre.hope things stay stable for you,Marcia





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