Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 23, 2007.

  1. ladybugmandy

    ladybugmandy Member

    hi all. me again (lol)

    as you most of you know, my CFS started almst 15 years ago after a bad bout of mono. since most of my symptoms have been from the neck up (neck pain/cramping, severe cognitive impairment, fog, feeling of swelling and throbbing in the brain) i was wondering if i might have chiari malformation.

    i guess this is not likely the main cause of my problems since my RNase L is so high too, but i was wondering if any of you have considered this...

    i may talk to a specialist about this. i had an MRI but i heard they usually miss this.

    tbank you,
  2. findmind

    findmind New Member

    They won't find it unless you specifically ask them to look for it.

    It's highly controversial after a dr. claimed many of his CFS patients had it, and he operated on them. Some it did help, one was so much worse, I think she sued the dr.

    I have severe swelling at the base of my skull...feels like my skull has come loose from my spine, but I can't get anyone to take it seriously.

    I have severe spinal stenosis, ddd, spondylithiosis, too; they may contribute to this, I think. Only problem is, If I found a dr. saying I needed surgery, I wouldn't have it, don't think I'd survive it, after serious trouble with anesthesia during last surgery, minor, for TMJ.

    I don't know what to do or this, just be very aware of it and be extremely careful about moving about too quickly.

    There's always hope!
  3. ladybugmandy

    ladybugmandy Member

    thank you!!!

    and i am so sorry for your problems.

    perhaps you can find a doctor in the area to take you seriously?? or nearby?

    the chiari malformation sites have lists of specialists.

    i will wait till my RNase L goes down to look into this i guess....

    good luck
    sye[This Message was Edited on 12/24/2007]
  4. Waynesrhythm

    Waynesrhythm Member

    Hi Sue,

    I considered whether I might have Chiari Malformation a number of years ago. I couldn't find anybody locally who would do the MRI scan and send it to a specialist for interpretation. (They insisted they would find it if it was there, but my research indicated otherwise).

    I finally gave up because things were not going well. I did discover that Chiari Malformation is pretty rare. If it is a problem however, corrective surgery can very beneficial.

    I eventually came across information on the Atlas Profilax treatment here on this message board. I got this one-time treatment of correctly aligning the uppermost vertrae in the neck this past July and it is one of the best things I've ever done for myself.

    I posted fairly extensively on my experience on a thread entitled: "Atlas Profilax Worked / is Working Very Well for Me". You can access it by copying and pasting the following address.

    The odds of a person have Chiari Malformation are very low, whereas the odds of having a misaligned Atlas are pretty close to 100%.

    Best to you.

    Regards, Wayne
    [This Message was Edited on 12/25/2007]
  5. Timaca

    Timaca New Member

    There is a lady on the "Brain Talk" forums that knows a lot about Chiari. Try to post some there. Also do some google searches on the internet...I'm sure there are some reputable CM medical sites that could help you get good, solid, info.

  6. marym3165

    marym3165 New Member

    Chiari malformation is hard to miss on an mri, I saw this on my mri report and asked a couple of doctors about it, one doctor never even heard of it. I finally found a doctor who recognized my symptoms and I had the surgery, I was home in 4 days. I was glad I did it.
  7. ladybugmandy

    ladybugmandy Member

    thank you for your input everyone. i appreciate it:)

    just desperate for the fogginess to end....its getting worse all the time :(

    all the best
  8. intensemom

    intensemom New Member

    Going gluten-free and having my atlas aligned both helped!
    Also, treating for candida!
    Good luck!
  9. msbsgblue

    msbsgblue Member

    I have one and they found it the year after I became ill 20 yeats ago.

    I went to some of the best neuro and nuero surgeons in the country at Kansas City.

    I was advised with all the germs in hospitals and staph infections that the cure could be worse then the symptoms. I was told better to live with it unless I began to have major leg problems or incountenance in my bowels.
    [This Message was Edited on 12/27/2007]
  10. simonedb

    simonedb Member

    hey anchrhlds and msbsg if yer still around, curious
    --I have heard about the brain swelling in cfids before and being like chiari etc, i imagine someone could have both things happen though, how to know?
    ----and I am curious what the docs meant when they said there is staph infection etc in the hospital, why would that stop asurgery recommendation? I mean I can see why I would take pause about it but I never heard of docs being that worried about it. can anyone say more about that?
  11. My mom had heard about Chiari Malformation also, as a couple of years back, there seemed to be a lot of 'hype' about this..

    So, she asked my neurologist, whom, I consider to be a very wise, & trustworthy man, knowledgable, etc..

    He said the very same thing Wayne stated, and then some.. He too said that it is extremely rare,

    Also that it was something *chiropractors* have really built up, as basically a money scheme/scam, to have people repeatedly come back for 'adjustments' and doctors also (surgeons/neurosurgeons) ...

    He also reiterated the danger of such surgeries, and how so many people have been injured from chiropractic adjustments,

    (my physical therapists have also warned against C-spine adjustments, and know of people who have gotten paralyzed, or suffered stroke, or milder, but still very serious injury from inexperienced Chiropractors, and chiros that step out of *their* line of expertise...)

    As far as the question regarding staph & other infections mentioned,,, I worked in a hospital, and the four years before that, in nursing homes... we were told about what is known as "nosocomial infections" ( I know I probably misspelled that,) but, what that is/means, is that

    We found, that even in *healthy* patients, and in the best facilities, often times, leave a hospital more ill than when they went in, due to 'nosocomial infection' what that means is, that they caught illness, while being IN the hospital, for surgery, pneumonia, dehydration... all sorts of things.,,

    Thus, our elderly patients, that were admitted for procedures, treatments, surgery (lots of broken hips, etc)... became sicker while IN the hospital, due to catching other viruses/illnesses from being in the hospital.

    Immune compromised patients as well, not just elderly, all ages, too would be at high risk for this, which is the *last thing* ANYONE needs, while recovering from a surgery, injury, illness, etc.

    My grandmother developed a serious Staph infection while recovering at IU Medical center, in Indianapolis, 16 yrs ago.

    Our news, (or it MAY have been an article on MSN's homepage, also,) did an in depth report, of a study that had been conducted, apparently, there had been a LARGE increase of MRSA infection/deaths, in hospitals, nationwide.. and a large increase in Staph also, and they were studying hard, to find out *why*

    I will see if I can find on the internet, more information about this...

    I think maybe, though, the doctor may have also (while, he or she WAS telling the truth) may have also used that as a sort of 'scare' tactic, since they just felt wholeheartedly that this type of surgery was not necessary,

    I believe Wayne, & my neuro also, in that the CM *IS* much more rare, than is being told... it's like many other 'cures' that have come up in the past (but so much more DANGEROUS, and *exspensive!!*)

    I know myself, that I've belonged to this, and another fibro board (I quit the other, due to HUGE, completely different, and very difficult format change)

    Until maybe 4 years or so ago, that was something (CM) that I had never heard mentioned, in regards to being a possible cause of symptoms, rather than CFS, or FMS themselves, and that *surgery* for CM could 'cure' people, if not, at least make them immensly 'better'.

    I had only heard of CM, actually, when I was actively furthering my medical education.

    Very little time was spent talking about it, also, since, at the time, I was a combatmedic/EMT..

    the military tries to cram as much information about the body as a whole, (the EMT part of schooling to prepare people to take the test to become a Nationally Registered EMT-basic), along with studies specific to injuries/treatments pertaining to injuries specific to war/battle wounds, and just treatment in the field/ambulances/helicopters, etc... until the patient(s) could reach the M.A.S.H units, etc. for further treatment, surgery, life-saving procedures..

    I know for me, my mother, while absolutely *against* surgery, was just looking for ANY hope, of me getting better, but, as I stated, my neurologist immediately informed us, that (basically in his opinion, I think he *really wanted* to just tell us "that's just a bunch of b.s.")

    but, he had to keep his professionalism about it, in front of us- or at least *felt* he should.. mom & I wouldn't have cared, we just wanted the information/education it on, and if he felt it was b.s. that's what we'd want him to say, which he basically did, just in a more professional way..

    Not to say, that he doesn't think it *exists*, just, as I said above, he said chiropractors, (for the most part, in *his* experience) are 'feeding' this to people, giving them hopes that a 'simple' (umm, I DON'T THINK SO!) surgery, could possibly even get them working again.

    I forget *what* all my neurologist said has gone wrong in the past, with those surgeries,

    And, how unfortunate, for the person/people here, who DID have it, and still had no, or little, improvement afterwards, if not, ending up *worse* from it.

    Take care, & best wishes..

  12. simonedb

    simonedb Member

    thanks for weighing in, I know what you are saying, I remember actually the hype started in 99 in midwest and I checked into it then because I have cervical stenosis that interestingly came to my attention after I had a surgery and then went to a chiropractor because felt rotten after the surgery and the chiro messed me up so I got the worst possible case scenario from both the surgery and the chiro and never have gone back to baseline (like 19 years).
    I was just surprised to hear a doc use possible infection as a reason not to get surgry although I agree with you its a risk, its just so wholistic thinking ha not used to that from them.
    My father actually passed away in the hosptial after getting aspergillus after a back sugery, he never made it out of the hosp even though the surgery technically was a "success".

    i just had a flare up with my stenosis ( I think), whacked head on car hatch accidentally and a few other things happened that irritated it more and when its been like 9 months since spine flared up I get fickle and forget how bad it can be then when it happens again I start thinking I need to do something more about this, but I have tried everything 'cept surgery so I start researching that again. There are some minimally invasive spine surgery places that it might be interesting to get anotehr opinion from, its been like 8 years since had an mri done of neck probly time to check again.

    and I just heard from an old friend who had brain fog and other health issues and when she had spine surgeries earlier this year it eventually improved her quite a bit, i heard from her on email, i need to find out what surgeries she had.

    I think all the hype of the chiari surgery and neck surgery scared docs off of exploring legitimate cases, as I recall i dont think the surgeons were saying they could cure fms but the news twisted the info, the docs operated on people who met neuro criteria for surgery who also had fms and the press sensationalised it saying surgery cures fms, and then a lot of people felt worse after the surgery, probly cus the docs hadnt taken into consideration the whole autoimmune component in fms/cfs folks and how to do surgery perhaps differently with them in terms of anesthesia etc so then the whole concept was ostracized as were some docs.
    so now its hard to get an objective evaluation if you have both fms/cfs and spinal or foramen magnum issues. also there is the aspect that cfids etc can cause extreme brain inflammation so how do u ferret that out......
    god i hate this web of junk to figure out

    but lets fuhged about it for now and bring on the movies and the food! happy t-day.
  13. holiday16

    holiday16 New Member

    He said he's had enough patients that seemed like they have Fibro. and turn out to have that he checks everyone he can to make sure. I had an MRI and it came back fine. He said the symptoms can be very similar.