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    Old 11-12-2008, 04:19 PM   #1
    munch1
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    tonsillar ectopia

    hi guys,
    i really got a long story so i will try to make it as short as possible.around 1997/1998 i got very ill.first symptoms were heavy weighted legs like i couldnt move them and then over xmas period left sided weakness,couldnt swallow and nausea(chronic)and generally just really unwell.was told it was glandular fever but because of weight loss was put in hospital.they found nothing.anyway last ten years i have had the following symptoms and was told i maybe had mutiple sclerosis but then was told i didnt have that either and was told i need to go to physchiatrist.i always have refused to see a phychiatrist mainly because i know myself and know i wouldnt do this for attention or any other reason.so here are the symptoms for last ten years

    :my main symptoms are these:
    1)fatigue
    2)leg weakness
    3)not being able to walk longer than 5-10 minutes
    4)eye problems in right eye(blurred vision,white dots,stripes and other stuff)
    5)off balance
    6)tight bands around ankles like im wearing tight socks
    7)jerking of legs
    8)weakness at my wrists
    9)pins and needles
    10)falling from my legs giving out from underneath me
    11)buzzing and piercing noise in my right ear has been there for 5 years now
    12)constipation
    13)zapping in my legs and msucle spasms
    14)cramping in my toe and my toe stands straight up it hurts like hell.
    new symptoms this year and last year are
    1)tight prssure around my chest under ribs this has happen twice...once was very painful other time was just like extreme pressure.
    2)weakness in my arms after burning sensation left.
    3)sitting on a chair getting a zapping in head and almost falling off chair cause of causing loss of balance
    4)my right hand trembles.
    5)the brightness of the sun seems to affect my eyesite i cant see.
    symptoms i have had in past b4 1998
    1)tripping on something that wasnt there.
    2)walking like i am drunk(this symptom has become more problematic the last few years)
    3)went blind at age 20 while i was working and my head was banging really bad...after i could see after about three hours i had for over a week continued blurred vision and dizziness and weakness.
    4)walking kids to school in summer always caused me to feel extremely dizzy
    5)i was never the same after i had my third child but i always felt so great when i was pregnant.after my daughter i was tired alot and had loads of dizzines but i just put that down to being extremely busy with two little ones but after my third child i was always tired and in bed by 8pm every night.always had lots of headahces and numbness but never occured to me to do anything about it.
    since 1998 my life has never been the same.
    i have other symptoms but i wont go into them as i said previously i dont want to be classed as a hypochrondriac.
    but one thing i do need to mention also is using stairs is a killer.it takes a huge amount of strength to get up or down stairs.

    anyway my last mri was done in 2004 was told to see phychiatrist since no evidence of ms.recently i went to see a neuro-opthamologist because in the sun i cant see a dam thing.it is like it blinds me.the neuo told me because i had seen a specific doctor and he knew this doctor and that he was a good doctor and also a friend of his he was not going to help me so i got mad and told him what a load of bull...... and walked out.but after my anger had died down i started thinking maybe i did have a mental disease but then i thought no no way so i relooked at my mris and found that my back is completely stuffed and that the mri meant for multiple sclerosis(which only took ten minutes by the way)had something called tonsillar ectopia on it.it also says it goes in 8mm.so i looked it up and low and behold it came up as maybe chiari.so i went back to my gp and she was so mad.i have been going around for the last ten years thinking that hey maybe i am or do have a phychiatrict problem but it appears i dont.i rang a neurosurgeon...his secretary told me to fax mri report and she would get back to me.so heres the thing she rang me tuesday and told me that my mri report doesnt have much wrong in it but i guess i can make you an appointment so 5th of jan i go.my question is is it better to go to someone who specialises in chiari or just a normal neurosurgeon.i dont feel so keen on this guy i just feel its going to be a waste of time again and honestly for my sanity i dont think i can go thru another doctor telling me its all in my head.
    sry this is so long.

    cheers susanne

     
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    Old 11-12-2008, 07:54 PM   #2
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    Re: tonsillar ectopia

    hi Susanne

    Your story is similar to mine....I have a 6mm tonsillar ectopia that was interpreted as not consistent with a Chiari l malformation....so confusing isn't it?

    My symptoms are many and some are the same as yours and some are different.First of all I know oh so well what you are going through with the doctors.If they aren't familar with Chiari then you are wasting your time even going to see them.This is sad,but very true.

    Most of my symptoms have been alleviated,but they were from being B12 deficient(another hard to diagnos health problem).So I am getting B12 injections since Feb.'07...I feel much better,but still not completely well.

    Have you had your B12 tested?When your B12 is low it can present with a ton of neurological symptoms.They have to also run an MMA,Homocysteine and Folic Acid test,because sometimes even if your B12 is in normal low range you can have a hidden(called an occult) B12 deficiency...which is what I have and many drs. miss diagnosing this so that's why it is crucial to have not only a B12 level test,but those other three tests also.

    Low B12,Chiari and MS all have similar symptoms....so I am in the process of looking at which symptoms have decreased or completely disappeared so I can tell which symptoms are from the low B12 and which symptoms are from the Chiari.It's very difficult trying to make sense of it all.

    So I'm just wondering if you've had any blood testing done,because with Chiari it's very important to first see if there's anything else that could be causing your symptoms.Just because you have Chiari doesn';t mean there isn't something else going on.

    I know you said they ruled out MS,but did they rule out anything else?Low B12 is the number one imitator of MS and now it seems Chiari has joined in there too.

    Please post back.....I care and I know all too well what you're going through.

    Scout

     
    Old 11-12-2008, 10:31 PM   #3
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    Re: tonsillar ectopia

    Hi Susanne~

    I'm so sorry that you have been dealing with this for so long. Its sad when we have to find out on our own. I went through a similiar experience.

    Your symptoms definately do reek chiari. I have symptoms very similiar. The one that you didn't mention wa headache. That is my most disabling symptom.

    The stair thing I know only too well. But since my diagnoses of chiari, I was also diagnosed with tethered cord. I had my cord detethered and amazing but I can now do stairs

    An 8mm herniation will many times be brushed off by neurologists and neurosurgeons. They believe only very large herniations can cause symptoms. But this is sooo untrue. Mine is 5 mm.

    I decided not to waste my time on one more dr that was going to send me away in tears and I booked an appointment with a chiari specialist. That is the way to go. They are more experienced and have a better understanding of how chiari presents itself. They will look at other things besides the size of the herniation. They can do a cine MRI to see if there is a blockage of CFS flow, as well as an elongated brain stem causing the tethered cord. This is very common with chiarians.

    After so many years of suffering, you deserve to go straight to someone who will show you some compassion and look at the whole picture.

    Please keep us posted and hang in there!!

    Know your not alone in this battle

    Cindy

     
    Old 11-13-2008, 03:46 AM   #4
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    Re: tonsillar ectopia

    hey scout,
    yes i have had loads of blood tests mainly for things that do mimic or have neurological symptoms in them..B12 was one and diabetes was another.both came back ok.i know unfortunately after all this that i have been thru that if you fit the criteria for something but it doesnt show on mri then they really dont bother with you....its really sad and humiliating to say but it happens.for the ms it wasnt a true mri anyway because it only took ten minutes and no dye or whatever it is called was used.even my gp was shcoked when i told her.my back mri i have scoliosis,a disc going inwards,a thing that looks like a lesion disc degeneration and central canal stenosis.none of which were ever mentioned to me apart from the disc going inwards and the only reason i was told about that was because of the ms suspicion i would have also needed a lumbar puncture but it wasnt performed because of where the disc is out of place is where they put the needle for the lumbar puncture and i was told it was way to dangerous to do that.i dont honestly know what to do anymore.........i just cant do the doctor thing anymore they have worn me down....however bizarre it may sound i also got told when i went to an emergency room in the middle of the night for neurological problems i was told they dont help people with neurological problems.i found that just totally rediculous and very offensive because what are hospitals for if not for helping people.but it actually did happen.
    i dont know where to go or where to turn really.
    thanks for your help though.
    susanne

     
    Old 11-13-2008, 04:04 AM   #5
    munch1
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    Re: tonsillar ectopia

    hey cindy,
    i used to have alot of headaches b4 all the other stuff started vigourously.i think i tend to focus on trying to walk and keep the other stuff under control.not in taking medications but just trying to defocus from it all.i do get not constantly but bad headaches at the back of my head..but i have more dizziness and feelings of numbness and the zapping than headaches.i often complain to hubby about a feeling of water in my head it sounds weird but thats the only way i can explain it.i just have a really bad feeling about going to this next specialist because of his secretaries disinterested and "oh theres nothing really wrong" attitude.i think ill go with my instinct and not go.ill ring my g.p tomorrow and ask her if i can find someone who actually specialises in chiari and the back.i need help...actually have needed help for a long time and have never gotten it.maybe its time someone listened and took me seriously.can i ask were you ever told to go see a physchiatrist and if so did you and did it help with a diagnoses?....i have been told to go see one as they could help to get a diagnoses but im not so sure. ty for your help
    susanne

     
    Old 11-13-2008, 06:16 AM   #6
    jellebeans
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    Re: tonsillar ectopia

    hi munch, my story is also very long so will spare you the details!!!!! ive been ill for years now and got nowhere with doctors but with help from these boards im now looking into having chiari,my scan shows a minimal herniation. but i just wanted to say that i also have been told by a neuroligist about 6 years ago i need to see a physciarist..i left his office in floods of tears!!!! and for a time i started to think..well maybe i am mental!!! but i think we know are own bodies and we know when there is something wrong. this totaly crushed me and my confidence in doctors so i gave up going and suffered all these years but im now ready to face them again and get to the bottom of this . as far as im concerned if theres pain theres something causing it!
    the support and imformation ive gained on these boards have been my lifeline!! ive gained great imfo to help me move forward and now have alittle more confidence to get back to the doctors and push for answers. i still find it so hard to believe that so many people with chiari are over looked as since doing my reasearch ive found sooooo many people with it!!!! and i have to add alot of them have gone years being ill before any diagnoses. in this day and age i cant see why doctors cant be more knowledgeable of this condition!
    anyway i hope you get the help you need xx

     
    Old 11-13-2008, 08:53 AM   #7
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    Re: tonsillar ectopia

    Hi Munch~

    I can relate to what your saying. I had headaches my whole life and when my leg issues began and I started going to Dr's to find out the cause, I didn't think my headaches were related and didn't even mention them. The Drs at first thought I had MS and did a lumbar puncture and this was what put my headaches in full motion. Before the LP, I could take tylenol for relief, now, not even narcotics relieve my pain.

    The things we experience are difficult to explain because others who don't have chiari don't experience the things we do. Water rushing in your head sounds like a chiari thing. The CFS fluid builds up in our heads causing pressure so any weird symptoms you experience is expected.

    When my journey bgan with Dr's almost 2 years ago I went to my 1st neurologist in hopes that FINALLY I would get help. But instead, he told me to go see a therepist. I was furious and I never went back. I did find another neurologist and he was better but he ordered my MRI and totally missed my herniation when he did look at it. When I found it myself, he did opologize for overlooking it but also told me because of the size of my herniation, no one around here would touch me.

    Also, my own PC told me that since no tests were showing anything, that in the end, I would probobly find out it was sress causing my symptoms. Thats an unexceptable diagnosis as far as I'm concerned. So at this point, I cancelled all my Dr's appointments that were sceduled and went to a top chiari specialist. It was there that my symptoms were aknowleged. It was the best thing I ever did.

    So just be aware that going to someone who doesn't know chiari, you may have this tonsillar ectopia minimized and be told this can't be causing your symptoms. But it most certainly can. My advice is to skip that whole process and go straight to the top. But to keep your regular Dr in the loop because you may need him in the future.

    Getting the help we need with this condition is truely up to us. We really can't put our health in the Drs hands and hope they will help us get where we need to go. We have to be our own advocate at this point.

    We are all here for you!!

    Cindy

     
    Old 11-13-2008, 01:20 PM   #8
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    Re: tonsillar ectopia

    Susanne,

    You have more than 20 symptoms of Lyme Disease...and some sources say you should run, not walk to the nearest Lyme Literate Medical Doctor.

    Lyme isn't well known in Australia (but it sounds like it is common in the UK)...although it's there. I'm seeing more and more posts from your neck of the woods.

    You can find more info on the Lyme Boards...

    Good Luck.

    Bethsheba

     
    Old 11-14-2008, 06:25 AM   #9
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    Re: tonsillar ectopia

    ty i dont hold out much hope really but i have to try.its about all i can do.
    susanne

     
    Old 11-14-2008, 05:31 PM   #10
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    Re: tonsillar ectopia

    hi Susanne

    I'm with you on that.......I feel like crying me a river tonight.I know we have to be strong,but it all gets to be a little too much sometimes.

    Well we have to have Hope and with that hope we need strength to get us through the health issues we have.It's so hard when you're not feeling well and your quality of life is suffering and then on top of everything the drs. just don't give a care anymore...they are just plain uneducated and too lazy and ignorant to really help their patients....that just about sums it all up.

    I wish you well and I hope we all find answers to our health concerns.

    Scout

     
    Old 11-15-2008, 06:08 PM   #11
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    Re: tonsillar ectopia

    hey cindy,
    actually your posts have helped me in a way because i know for sure it will be a waste of time going to someone who doesnt specialise in certain things.i should and do know all this already but i never had any basis for seeing someone but now i do so to go where maybe i will be taken notice of will probably help alot.i will let you know what happens anyway and thx for everything
    susanne

     
    Old 11-15-2008, 06:29 PM   #12
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    Re: tonsillar ectopia

    hi beth,
    one thing they do do here when someone gets ill quickly is test for as many viruses they can think of that fit the symptoms you have plus a few that dont fit your symptoms.they tested me for glandular fever,ross river fever(carried by mosquitoes here)cat scratch fever which by the way i never knew anything about(cat scratches you and you can get sick if they have that virus in their system)and also a few tropical viruses that are in this country.plus hep A,B,C.the only thing that showed up was that i had had a previous infection of glandular fever and i didnt have it at the time of my going down hill fast.im not on any medications either.i was injected daily with vitamin B12 but it didnt make any of the symptoms go away.i understand the virus thing especially with some of them that can cause neurological problems BUT if a virus gets in your body and causes major symptoms like gullian barr but eventually they can go away some of course still have the symptoms many years later but most cause a problem say for arguements sake a year then the symptoms eventually do go away.the rest lay dormant in your body meaning they can come up in a blood test but it would have been a previous infection.so you could have had that infection as a child and never known about it.there is one particular one here they vigourously test for which is ross river fever it causes long term stuff....including fatigue,joint pain slowness etc.but that shows up straight away in your blood test.
    unfortunately my g.p always assumed i did have a virus all this time because i do have to agree there are many viruses around that they know nothing about BUT that was before she saw the mris i didnt realise that the neurologist didnt mention the mris to her she was just told they didnt find ms so i needed to see a phychiatrist but the bizarre thing is after my mri he said "oooo you do have a thing called chiari show up but you dont have the symptoms for it" now i said to him well can you send me to someone who might know more than you and because i questioned him and stumped his intelligence his next thing was to knock me down and tell me phychiatrict help was my way to go.i didnt buy that and have left everything for four years.my symptoms are no better.i use canadian crutches and was given a wheelchair by an occupational therapist who was disgusted on how i had been treated(to get an occupational therapist to see me i was sent to an aged persons hospital)one thing agreed upon in my case is most of my symptoms are neurological what is not agreed upon is what i have and i think its about time i was not stuffed around so much.i also have looked into all the vitamin defenciencies(sp)and its all ok.i even went to chemist to ask for some stuff to help me i.e as in vitamins and they told me after hearing whats happening to my body that they wouldnt sell me anything JUST in case the extra vitamins i wanted to take had an adverse effect on me.because that can happen too.my mother-in-law suggested for my chronic nausea to eat parsley with everything i ate and i have done that and it has helped somehwta but unfortunately even still i get terrible nausea.especially when my head plays up.basically i have had to fight every step of the way on this and its been a long hard road i have had to fight to stay alive(Not in suicidal way )i told my g.p the only way i could explain it i felt like my body had just decided to shut down she understood what i meant.anyway hopefully something will come out of this all maybe nothing ever will but its ok.
    susanne

     
    Old 11-15-2008, 06:44 PM   #13
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    Re: tonsillar ectopia

    Hi Suzanne~

    I would just like to say that reading what you are going through and feeling like your body has just "shut" down, I comepletely understand because this is what has happened to mine as well.

    But you have to fight this and step on anyone who gets in your way. You can get closure with this and a diagnosis besides anxiety and depression. It takes work but you have to go forward with determination and believe that chiari can cause whats happening to your body. Its a rough road we live but the unknown is much rougher

    Just don't give up until you find someone who will listen!!

    Take care

    Cindy

     
    Old 11-15-2008, 06:46 PM   #14
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    Re: tonsillar ectopia

    i think you have hit the nail on the head there...it might not be laziness though ....alot has to do with how many things mimic each other including all the very simple things like lack of vitamin B12 folic acid etc.BUT if you are taking the vitamins and your symptoms arent clearing up it has to be something else.when i was injected with B12 all i can say is it helped a little with the fatigue i was having but thats about it.nothing else went away.lack of B12 mimics ms,lupus...then you have thyroids that whether either low or high have neurological effects on ur body plus the feeling of being hot and cold and weight gain or loss.diabetes causes same thing plus either weight gain or loss.then theres the hepatitis family.my g.p told my son the other day when he asked her to help him get rid of a wart that warts belong to the herpes family and theres over 390 different types of herpes(its not all sexual) viruses but once your body gets used to the virus they dont pop out any more(the warts)and it just stays dormant.i knew she was directing that really at me because she has always believed that a virus was in my system.BUt i have to also admit that empathy should be part of the training of either a g.p or a specialist...you have to remember that they are taught to detatch themselves from their patients for their own sanity really but a bit of empathy would be nice i agree especially when someone is genuine.i have so many stories to tell on how i have been treated its amazing i think i have come to the point where i say to myself hey i deserve a bit of respect just like everyone demands.
    i hope you feel better and try not to let the "down" feeling overpower you.i know its hard but somehow we just seem to pull thru it.hope you feel better today.
    susanne

     
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