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  • so confused by neuro nurse, please help!!

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    Old 06-29-2006, 08:21 PM   #1
    bookchick
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    Red face so confused by neuro nurse, please help!!

    I've been having facial numbness and headache, so my neuro scheduled an MRI to rule out MS. Over a week later, I called and spoke with the nurse.

    She rambled through the results pretty quickly, mentioning something about a mild Chiri malformation as incidental. Then she said that the blood vessels on the right side of my head were slightly more dilated that the ones on my left, and the radiologist said that was unremarkable. Then she said she would call me back to let me know if I needed to have another MRI w/contast (I have allergies and they want to medicate me before the test)

    Well she called back and said the other test wouldn't be needed. That the blood vessels were slightly dilated and that the p.a. would discuss the results more thoroughly when I came in at the end of July for my follow up. Nothing mentioned about the Chiri. I started to get a little freaked, and she told me to calm down, the mri was only "mildly abnormal" and nothing to worry about. Yeah, right. I am reassured by the fact that if something bad was wrong, I would probably be brought in alot sooner and would be speaking with my neuro, not her physicians asst.

    Please help me understand this and maybe calm me down a little!

     
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    Old 07-05-2006, 09:26 PM   #2
    janet119
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    Re: so confused by neuro nurse, please help!!

    if everyone were to have an mri...a great deal of them would something wierd in their head. often there is something that is picked up and although abnormal for the general population it may not be abnormal to you. alot of times..i would say most times these abnormal things they pick up on mri are insignificant.
    as one who has had 8 mri's because my arteries are a mess i do know that it is quite normal to have a dominant side of your head with the blood vessels.
    i was born without a circle of wills but wouldnt have known it if they hadnt given me an mri for something else. i also have a brain tumor (meningianoma) but wouldnt have known that either if i had no mri. both these things are not normal but they are in my case, insignificant.
    chiari malformation is something to do with the tonsils pushing a little past where it should be in the back of the head. if the report says mild and no problem i wouldnt worry about it.
    do you perhaps have migraines? that can cause facial numbness.
    hope i helped a little
    janet

     
    Old 07-06-2006, 06:14 AM   #3
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    Re: so confused by neuro nurse, please help!!

    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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    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 07-06-2006, 08:59 AM   #4
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    Re: so confused by neuro nurse, please help!!

    hi,
    accually i had a stroke, then another..till i hit 7 of them. i was having all kinds of weird things happening to me but apparently had nothing to do with my arterial makeup. as i was born this way and lived 38 years before i started to have problems. i had two blood diseases i didnt know about. my homocysteine is a big problem as it was at 36 (should be below 8). that can cause premature athersclerosis and it did. so my basilar artery was 90% closed..normally if there is a problem with that artery there is a back up that will keep the flow going to most important areas. because of my wiered system i have no backup. they told me it was an unfortunate combination. i also have antiphospholipid antibodies which makes you clot like crazy. i didnt knwo this either. so i had a stent put into my basilar artery to widen it. i have never been so sick in my whole life when i had that done. but in the end it saved my life.
    i had two cerebellum and five brainstem strokes. i do know just how lucky i am to be in the shape i am in. i think age had something to do with it as i fought like a dog to get back everything i could. after a few years in a wheelchair i can now walk with a cane. my speech sometmes get mixed up. sometimes i just cant remember words. i have use of all my limbs but i have clonus in my leg and arm. my balance has a mind of its own. i have quite a problem with labidity i think its called. i do take something for it but it doesnt take it all away.
    before i got sick i was healthy and very active and i never got sick. so it was a real surprise when the world came crashing down one day. i did start off with a whole bunch of weird symptons. started one day and never stopped.
    sucks.
    and yes most definitly get a second opinion if you are not comfy with the one you get. and dont do anything invasive without a second opinion.
    i never had a second opinion when i first started to have problems. thankfully we moved to a diferent province and i had to start with a new neurologist who dignosed me right away. the first one had me for 16 months. if he had just run two simple blood test with the battery of other blood tests he did...i might not have had any strokes.
    we dont see nurses or pa's here. we go for appointment and see the nusre just for vitals..then we see the doc. nurses arent aloud to tell us anything either.
    janet

     
    Old 07-06-2006, 07:53 PM   #5
    bookchick
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    Re: so confused by neuro nurse, please help!!

    Hello all....thanks for the replies. I went to the Chiari website and found that all the symptoms I went to the dr. with, as well as a bunch of other symptoms I have, are found with the malformation.

    Neck pain, headache in back of head
    Vertigo and dizziness
    ear pain and ringing
    sore throats

    I have been diagnosed with so much stuff
    Anxiety attacks
    allergies
    eustachian disfunction (sp)

    I found that even though the finding may be incidental and mild, a person may be symptomatic. Pretty interesting, huh?

     
    Old 07-07-2006, 06:54 AM   #6
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    Re: so confused by neuro nurse, please help!!

    Just because something is called an 'incidental find" does NOT mean it cannot be serious,all that means is that this 'thing' was found while looking for something else.my cavernoma inside of my cord was also an incidental find while I was just having an MRI done to find out which one of my c spine discs was actually herniated.and that little SOB just basically devistated my entire life now.

    all I can say janet is wow.you HAVE come a long way.I hope things stay stable for you now.good luck,Marcia
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    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.

     
    Old 07-07-2006, 11:07 PM   #7
    troublesleeping
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    Re: so confused by neuro nurse, please help!!

    I agree with "feelbad", he is right. First of all DEMAND to see your doctor, not the PA. I am an RN working on my Nurse Practitioner and can tell you that a PA certainly does not have the training and insight of the MD, is not an independent practitioner and is working under the direction of the MD so might as well see the MD right? Not at all discrediting the skill of a PA, but remember that they are an "assistant" to the physician. I am also suprised that the nurse was giving you results over the phone. I don't know about other places but that would not fly (or at least should not) in NY.

     
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