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  • A true DX of chiari/now at a standstill!

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    Old 09-21-2009, 02:57 PM   #1
    Ltaylor21
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    A true DX of chiari/now at a standstill!

    hey,ok so its been a while since i last posted on here.My 3 year journey of being my own advacote.Now,i truly have a DX.So here in the real World though we look to Doctors for answers.NOt always do we get them,sometimes we have to do the research as well as having a little bit of faith too.Just when i thought I had a plan,which let me say took me a year to finally go & see Dr,Michael Rsoner without not support from family & friends.Just my gut telling me thats where i needed to go.So i make this journey & get my questions answerd.Let me say he is very smart & did a very lenghty exam on me,that no other Doctor has taken the time to do.So there it is,after prob over 20 or so different DX.ONe that make since.I have what is called chiari zero.Apparently this has been dismissed by so many Doctors ,so i should be happy.I finally know,however i have accepted this now for what it is.Problem is there is a chance that Dr.Rosner will not be able to practice anymore.I dont know what that means for me,thats where i need some advice & help from you.I have been already all around with this.NO other Doctor thinks i have this.I have tried the Chiari Institute in New York for over a year now.They have not been nice at all as far as trying to get me in.I have left messages over & over again.I have sent my records with films,all i have recieved is a message on my answer machine saying at this time I'm not a candidate.Not sure what that means.I guess i need to be in crictical condition,i say that because i have left messages begging for someone to call me back & help me.I have always heard good things about them,however no matter how overwelmed they may be.A simple phone call to answer my questions was deserved.So with that being said,i dont know where else i can go.I not sure how things work there,i can tell you last Dec they were going to see me/without any records.However i couldnt go at that time.I called back withing a month or 2 later & they were not willing to see or help me.Not sure when they were willing before.Im scared & so frausted that i have something that can be very serious.I have a list of symptoms,that only keep getting worse & have no where to turn now.Please some advice/postive advice.Thanks

     
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    Old 09-21-2009, 07:47 PM   #2
    scout316
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    Re: A true DX of chiari/now at a standstill!

    hello Ltaylor21

    first of all may I ask you what your sx are?please list all of them.

    I was dx with a 6mm herniation not consistent with Chiari 1 Malformation and with no characteristics of Chiari(that is what the radiologist said on my MRI report).

    I had 30+sx and they are mostly gone.I was treated with B12 injections monthly for a low normal B12 level with high MMA level.

    Neurologists are divided on their opinions about Chiari.50% say Chiari is not the cause of the patients sx and 50% say it might be the cause of sx.The drs. I saw said that neurosurgeons are blaming Chiari for the sx when it's not the Chiari causing the sx and that the sx need to be investigated and treated for what they are.

    Everyone that I know of that had decompression surgery is Worse Off now....that is not a surgery you want to have.Unless you have a Syrinx or a blockage of CSF then you need to have your sx checked out.

    Brain surgery is not a slight thing.I know you're probably exhausted from enduring so many sx,but you really need to find a dr. to help you find out what is the cause of your sx.I know most primary docs are good for nothing(yep I've been down that road many,many times) and don't want to bother looking for what is wrong(where'd they get their medical degrees at is what I'd like to know)so you keep trying dr. after dr. and still don't get a dx or a correct dx.

    So if you could list your sx I would like to compare them to the sx I had and see if there's any similarity,okay?I want to try and help you somehow.

    If you have zero Chiari then that means there's no herniation,right?I've heard of that too,but what did that dr. you saw suggest you do?have surgery?

    I did not have the surgery and I'm so thankful for that.It's really kind of scary to think that drs. would recommend surgery when it isn't necessary.

    Yes I heard great things about TCI from another poster here....so that is strange that they were willing to help you and then they just ignored you.Maybe drs. are being investigated for performing Chiari surgery that wasn't necessary.....there are many people having it and got really messed up from it(surgery).

    Did you have the test to see if your CSF was blocked?

    Please post back~Scout

     
    Old 09-22-2009, 07:17 AM   #3
    Ltaylor21
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    Re: A true DX of chiari/now at a standstill!

    Hey Scout,
    thank you so much for your help.Ok,so when you say Sx.You are asking if i have a syrinx right?? I need to get used to some of those terms.So,i did all the tests last week to check for that.I had the Rosner protocol done,MRI,tilt table,X-rays/ MRI of back etc..Was suppose to go back next week to discuss all results with him,however when i tried to call yesterday,his office told me they couldnt make anymore appts at this time.They are waiting to see whats going on with the medical board???When i went the first time,he viewed my MRI from last year i brought with me to the first appt,However he wanted to do his own scans & tests.He did say by looking at what i already had that it appeared i had a chairi zero & what looked like a blockage of fluid between that area,he said everything looked bunched up & the flow wasnt good?? Here are my symptoms: headache,dizzy,numbness in hands/feet,weakness/chestpains/lump in throat,as well as sinus drainage/sore throat all the time.I could go on....severe neck pain/back pain.As if i cant turn my neck,ringing in ears too.He never suggested doing surgery,just that it has helped alot of people get better.What are your thoughts on this?? thanks

     
    Old 09-22-2009, 07:28 AM   #4
    Ltaylor21
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    Re: A true DX of chiari/now at a standstill!

    hey Scout,
    I forgot to mention that he also sent me to a cardiologist for a tilt table test,which i failed 100 %.He said that something was going on with my brain,because my heart rate was up very high & my blood pressure dropped very low while doing the tests?? have u had that done??

     
    Old 10-25-2009, 01:37 PM   #5
    marcopolo
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    Re: A true DX of chiari/now at a standstill!

    My daughter was also a patient of Dr. Rosner. He diagnosed her chiari this summer and she was looking forward to surgery when he lost his license. This is a very sad situation. Neither one of us are well enough or financially able to travel to another doctor. Does anyone know of another chiari doctor in the southeast?

     
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