Help Chronic Pain

Question:

Hi All — Does anyone know anything about the link between Chiari Malformation and Fibromylagia type pain? I was diagnosed with a Chiari malformation a few years ago before all the joint pain and other problems began — however, I never realized the two could be linked. For those of you who don’t know it is where the cerebellar tonsils (of the cerebellum) sag too far down restricting CSF flow and putting pressure on the spinal cord. Mine was minor at the time but caused a lot of pain and two hospitalizations. It has since been under control, or so I thought because they had gotten the headaches under control, however all my other symptoms have been on the rise the past year or so. I just read an article about how there are a group of Fibromyalgia patients with this condition and they believe it isn’t fibro or an autoimmune disorder causing the pain but this brain abnormality restricting CSF flow and messing with the CNS. Anyone know anything about this? I am thinking of asking for another scan of my head (haven’t had one in a year and half) to see if the Chiari’s is worsening along with my other pain — may be more than just some weird coincidence. Any thoughts? Merry Christmas to those of you who celebrate Christmas! Happy Hannukah to others! And Happy Holidays to all the rest! Stephanie

Response:

As usual, Stephanie, I am clueless. I am only replying to wish you happy holidays too. Someone smarter may have an answer for you. BJ-Sk. Canada "Stephanie Townsend" <ler…@nospam.hotmail.com> wrote in message

news:97b99$3fe863d7$4069d072$11084@msgid.meganewsservers.com… – Hide quoted text — Show quoted text -> Hi All — > Does anyone know anything about the link between Chiari Malformation and > Fibromylagia type pain? I was diagnosed with a Chiari malformation a few > years ago before all the joint pain and other problems began — however, I > never realized the two could be linked. For those of you who don’t know it > is where the cerebellar tonsils (of the cerebellum) sag too far down > restricting CSF flow and putting pressure on the spinal cord. Mine was minor > at the time but caused a lot of pain and two hospitalizations. It has since > been under control, or so I thought because they had gotten the headaches > under control, however all my other symptoms have been on the rise the past > year or so. I just read an article about how there are a group of > Fibromyalgia patients with this condition and they believe it isn’t fibro or > an autoimmune disorder causing the pain but this brain abnormality > restricting CSF flow and messing with the CNS. Anyone know anything about > this? I am thinking of asking for another scan of my head (haven’t had one > in a year and half) to see if the Chiari’s is worsening along with my other > pain — may be more than just some weird coincidence. Any thoughts? > Merry Christmas to those of you who celebrate Christmas! Happy Hannukah to > others! And Happy Holidays to all the rest! > Stephanie

Response:

Don’t worry about it! Thanks for the reply anyways. It’s a weird, weird condition that I had never heard of until I my own, what I like to call, "brain sag"  Steph "BJ" <B…@sk.nojunk.ca> wrote in message

news:vuho4vfb6kj1d0@corp.supernews.com… – Hide quoted text — Show quoted text -> As usual, Stephanie, I am clueless. I am only replying to wish you happy > holidays too. Someone smarter may have an answer for you. > BJ-Sk. Canada > "Stephanie Townsend" <ler…@nospam.hotmail.com> wrote in message > news:97b99$3fe863d7$4069d072$11084@msgid.meganewsservers.com… > > Hi All — > > Does anyone know anything about the link between Chiari Malformation and > > Fibromylagia type pain? I was diagnosed with a Chiari malformation a few > > years ago before all the joint pain and other problems began — however, I > > never realized the two could be linked. For those of you who don’t know it > > is where the cerebellar tonsils (of the cerebellum) sag too far down > > restricting CSF flow and putting pressure on the spinal cord. Mine was > minor > > at the time but caused a lot of pain and two hospitalizations. It has > since > > been under control, or so I thought because they had gotten the headaches > > under control, however all my other symptoms have been on the rise the > past > > year or so. I just read an article about how there are a group of > > Fibromyalgia patients with this condition and they believe it isn’t fibro > or > > an autoimmune disorder causing the pain but this brain abnormality > > restricting CSF flow and messing with the CNS. Anyone know anything about > > this? I am thinking of asking for another scan of my head (haven’t had one > > in a year and half) to see if the Chiari’s is worsening along with my > other > > pain — may be more than just some weird coincidence. Any thoughts? > > Merry Christmas to those of you who celebrate Christmas! Happy Hannukah to > > others! And Happy Holidays to all the rest! > > Stephanie

Response:

Hi Steph! Maybe someone at FMS would know this.  I, too, am clueless.  You sure got a weird one there kid.  I will look up some Google stuff on my next break.  If you don’t hear back from me, it either means I didn’t find it or I scorched the cookies. It was good to hear from you though.  You can post some more updates while you’re on your Christmas break. : )  Hey, will you be graduating this year?   Hugs, Maggie

Response:

I will be graduating with my master’s this year (as soon as I finish that thesis!) — although I am in the doctoral program. Thank you for remembering, that means a lot to me! I am taking a medical leave for at least a semester (after the master’s is done in April) to decide if I want to continue on. My health has been so rocky that I think I need some time to learn to cope with all this, rather than plowing through and trying to ignore it as I have beend doing. I have been lurking here, reading posts from time to time, but during the semesters I am so swamped I rarely have time to post. So, I look forward to these brief rests! I will keep you all updates and try to post more. I hope you are enjoying your holidays Steph <JD…@webtv.net> wrote in message

news:26600-3FE91FA3-111@storefull-3214.bay.webtv.net… – Hide quoted text — Show quoted text -> Hi Steph! > Maybe someone at FMS would know this.  I, too, am clueless.  You sure > got a weird one there kid.  I will look up some Google stuff on my next > break.  If you don’t hear back from me, it either means I didn’t find it > or I scorched the cookies. > It was good to hear from you though.  You can post some more updates > while you’re on your Christmas break. : )  Hey, will you be graduating > this year? > Hugs, > Maggie

Response:

Hi Again! I found something for you to check out.  It’s a website for Arnold Chiari Malformation & they have an online support group too.  This page that I’m including is of success stories.  There’s like 12 or 13 pages & each story has the author’s name and/or email address that you can click on & write to them.  This link starts you out on page one. My understanding of this disease is that it’s often misdiagnosed as FMS, but I didn’t read a whole lot.  I hope you can find someone there that can help you to understand it all better.   You have done fabulous things throughout your illness, Steph.  I really don’t know how you have managed it all.  You definitely deserve a break, IMO.   http://www.pressenter.com/~chip/success.htm Take care & enjoy your Holiday break! Maggie

Response:

Stephanie Townsend wrote: > Does anyone know anything about the link between Chiari Malformation and > Fibromylagia type pain?

rare, I think. It’s "all over the ‘net"…"possible cure for fibro"…and it’s been discussed many times on a.m.f. There’s one person who claims she had it (sagging) and maybe had surgery. She posts on news:alt.med.fibromalgia.recovery.info but AFAIK still has fibromyalgia and I don’t know if she was scammed into the surgery out of desperation by a surgeon or tricked by a diagnosis by a quack or a chiro. Or if her headaches or migraine was cured or not. >  I am thinking of asking for another scan of my head (haven’t had one > in a year and half) to see if the Chiari’s is worsening along with my other > pain — may be more than just some weird coincidence. Any thoughts?

I was reading about it last night and apparently there’s 4 possible types of Chiari and it’s often caught in childhood when the brain parts are still forming and due to severe symptoms. (and corrected then). "might" be an association with scoliosis. If you have it and have been diagnosed by a neurologist..sure get another test to see if anything has changed. get 2nd opinion, before thoughts of surgery. Here’s one type described http://www.neurosurgery.org/focus/july01/11-1-4.pdf http://www3.sympatico.ca/ejfs/chiari0pubs.html Try slso " cerebellar tonsil herniation" if you are searching. Here’s one http://www.postgradmed.com/issues/2002/12_02/levin.htm  Migraine, vascular, drug-induced, and more Headache due to structural abnormality Arnold-Chiari malformation (ie, cerebellar tonsil herniation downward through the foramen magnum) is associated with chronic headache of two types: (1) brief, pancephalic cough headache, and (2) longer-lasting, dull, posterior headaches worsened by Valsalva’s maneuver (11). MRI is diagnostic, and in some patients, surgical decompression procedures have been curative. [] I’d hate to have you go through the risks of surgery, if the surgery doesn’t work or the cause was a different one. I’d hate for all the readers to go have themselves tested (and get hopeful of a cure for migraines), if it’s rare. FWIW J – not an expert

Response:

Thanks for the info. I was diagnosed a few years ago after two hospitalizations due to severe symptoms (severe headache, nausea, vomiting, dizziness and a lot of neck pain). I was actually diagnosed with recurrent dural tears, however, it was not made clear if these caused the Chiari, or exacerbated a condition that has been present my whole life and I just never knew. So, who knows at this point — I am not hopeful for a quick cure or eager to go into surgery, but I think it would be wise to check it out. Thanks for your words of wisdom. Stephanie "J" <BackHo…@inv.invalid> wrote in message

news:3FE96441.2B6486DB@execulink.com… – Hide quoted text — Show quoted text -> Stephanie Townsend wrote: > > Does anyone know anything about the link between Chiari Malformation and > > Fibromylagia type pain? > rare, I think. > It’s "all over the ‘net"…"possible cure for fibro"…and it’s been discussed > many times on a.m.f. > There’s one person who claims she had it (sagging) and maybe had surgery. > She posts on news:alt.med.fibromalgia.recovery.info but AFAIK still has > fibromyalgia and I don’t know if she was scammed into the surgery out of > desperation by a surgeon or tricked by a diagnosis by a quack or a chiro. Or if > her headaches or migraine was cured or not. > >  I am thinking of asking for another scan of my head (haven’t had one > > in a year and half) to see if the Chiari’s is worsening along with my other > > pain — may be more than just some weird coincidence. Any thoughts? > I was reading about it last night and apparently there’s 4 possible types of > Chiari and it’s often caught in childhood when the brain parts are still forming > and due to severe symptoms. (and corrected then). > "might" be an association with scoliosis. > If you have it and have been diagnosed by a neurologist..sure get another test > to see if anything has changed. > get 2nd opinion, before thoughts of surgery. > Here’s one type described

http://www.neurosurgery.org/focus/july01/11-1-4.pdf – Hide quoted text — Show quoted text -> http://www3.sympatico.ca/ejfs/chiari0pubs.html > Try slso " cerebellar tonsil herniation" if you are searching. > Here’s one > http://www.postgradmed.com/issues/2002/12_02/levin.htm  Migraine, vascular, > drug-induced, and more > Headache due to structural abnormality > Arnold-Chiari malformation (ie, cerebellar tonsil herniation downward through > the foramen magnum) is associated with chronic headache of two types: (1) brief, > pancephalic cough headache, and (2) longer-lasting, dull, posterior headaches > worsened by Valsalva’s maneuver (11). MRI is diagnostic, and in some patients, > surgical decompression procedures have been curative. [] > I’d hate to have you go through the risks of surgery, if the surgery doesn’t > work or the cause was a different one. > I’d hate for all the readers to go have themselves tested (and get hopeful of a > cure for migraines), if it’s rare. > FWIW > J – not an expert

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