Re: No gag reflex. Time to see the neurologist?

Discussion in 'Fibromyalgia Main Forum' started by pearls, Feb 2, 2003.

  1. pearls

    pearls New Member

    This is related somewhat to my question regarding surgery after a DX of fibromyalgia or chronic fatigue syndrome, but I want to bring in anyone who may have experience or knowlege about neurological symptoms:

    Last night I was looking for more articles about guidelines for surgery for fibromyalgia patients, but was not that specific when I used the search engine. I came up with a number of hits that were for USING SURGERY FOR A "CURE" FOR FIBROMYALGIA. This piqued my interest, though I had no plans for such an operation.

    It seems that a few years ago there was a lot of excitement in the FMS community because a neurolgist noticed a lot of people with previous diagnosises of fibromyalgia were among his patients who either presented with something called a Chiari malformation or a compressed cervical spinal cord.

    As I understand it, the latter two conditions were being treated with surgery to make a larger passage through which the spinal cord could fit. It seems that the spinal cord was either already or had become too large for the opening. The place I'm talking about is at the top of the spine - a place called the cerebellar tonsils (due to their resemblance to tonsils). I've only had a quick reading of this, but I think this is where the spinal cord attaches to the brain.

    Anyway, the idea of this kind of surgery for FMS patients had a flurry of interest for a short time before - at least this is what I read - some doctors issued messages of caution. However, The National Fibromyalgia Research Association is still funding research in this area. Even such luminaries in the world of fibromyalgia research as Dr. Muhammad B. Yunus publishes under their banner, so my impression is that this organization is legitimate.

    To see if one's fibromyalgia fit into the category of those who might benefit from either the surgery or therapy recommended by a team of physicians including a neurologist, the patient would have to undergo a MRI. It can't be interpreted by just anyone scanning for the "usual suspects," either. The radiologist has to be looking for specific things that can easily go unrecognized. But I'm getting ahead of myself...

    To ask for the MRI, a fibromyalgia has to present neurological symptoms to the neurologist. Among these symptoms is HAVING NO GAG REFLEX. Yours Truly, who has always gagged when something was shoved down her throat, such as a finger, decided to try this on the spot. Much to her surprise (oh, forget the third person language!!), I was able to actually shove the entire finger down there and rub the back of my throat! In other words, I DON'T HAVE A GAG REFLEX ANYMORE!

    Well...I'm certainly going to discuss THAT with my doctor on Wednesday when I see him again!

    I'm curious what those of you with knowledge in this area might have to say. Also, I'm curious how many of you also don't have a gag reflex.

    According to Dr. Edward C. Benzel, who has written an article called, "Management of Chiari Malformation and Fibromyalgia," these are among "Hard" neurological findings ("red flags," I would imagine:

    - nystagmus
    -external ophthalmoplegia
    -absent "gag" reflex
    -reproducible sensory abnormalities
    -lower extremity brisk reflexes
    -upper extremity hyporeflexia
    -quantifiable weakness
    -muscle atrophy
    -fasciculations
    -Babinski and Hoffmann signs

    Jeez! I wish they would speak English!

    About the alternatives suggested other than surgery, Dr. Benzel says the following,"Aside from surgery, further treatment is usually indicated. This often includes pain management and rehabilitation. Most importantly, it also includes the establishment of a working diagnosis and treatment plan by a multidisciplinary team, including neurosurgeons, neurologists and rheumatologists."

    To that, I say, "Ah, to have my doctors actually communicating and working together...!"
    [This Message was Edited on 02/02/2003]
    [This Message was Edited on 02/06/2003]
  2. 2girls

    2girls New Member

    Hi Pearls -

    This is very interesting - I have had no gag reflex since at least April/02. I have repeatedly mentioned this to my doctor and ENT and they continually say it is stress related. Well I have no stress. I had a cerebral MRI done in Feb/02 (looking for MS). What kind of MRI is involved to detect Chiari malformation?

    Thanks,
    2girls
  3. pearls

    pearls New Member

    You'll want to read Benzel's article. You can find it at spineuniverse.com. (I hope it is ok to mention the website.) Print out the entire article including the third part, which is the bibliography. Doctors always want to check out the bibliography, which gives them clues to the writer's authenticity.

    Another article that may be of some use is here at the ImmuneSupport site in the Archives. It is, "Spine, Skull Surgery Many Help Many with CFIDS," by David Hoh.

    that article quotes Dr. Michael Rosner: "Even with MRI scans, however, the diagnosis is frequently missed because of the way radiologists usually scan the neck. They're looking for herniation of the cerebellar tonsils"..."but a spoinal canal or foramen magnum that is congenitally narrow, not misshapen, would be reported as normal." Further, he stated that MRI scans typically do not account for the curvature of the spine and therefore make the diameter of the spinal canal appear larger than it really is.

    Anyway, the whole thing is tricky because looking for this - at least in 1999 - is still in its infancy. I can't personally guide you through this, since I just read about it last night for the first time. You'll have to use a search engine just as I did, learn about it, and perhaps we'll find something we can use.

    In any case, no gag reflex is just one of a number of neurological symptoms. Here are what is listed in Hoh's article under, "Symptoms of Chiari or spinal cord compression may include:"

    "- disordered eye movements, vision changes

    -headache in the back of the head that may radiate behind the eyes and into the neck and shoulders

    -dizziness, autonomic symptoms (orthostatic intolerance, NMH)

    -muscle weakness

    -unsteady gait

    -cold, numbness and tingling in the extremities

    -chronic fatigue

    -tinnitis (ringing, buzzing or watery sounds in the ears)

    -sleep apnea

    speech impairment

    -hearing loss

    -gastrointestional problems, irrital bowel syndrome, frequent urination

    -lack of a gag reflex, difficulty swallowing

    -symptoms are exacerbated by exertion, and especially by leaning the head backwards or by coughing.

    The National Fibromyalgia Research Association also has a five page comparison chart of symptoms for fibromyalgia/chronic fatigue syndrome as opposed to Chiari Malformation and Compressed Cervical Spinal Cord. This might be worth printing out as well. It is nicely done.

    -Pearl

  4. Combatmedic

    Combatmedic New Member

    a good neuro can see, (or not see) this Chiari Malformation on a brain MRI. My neuro immediately shot down the whole subject for me on my first visit (which was because of a brain lesion). His exact words were "Awwww that's a bunch of 'shuck-n-jive'!!" and, "that's just a way for somebody to pay for his ferrari" and then he reminded me to treat the internet "with the same caution and suspicion as you would a used car salesman."
    I have read up on it a little, and know someone who had the surgery; six months down the road, she was back in the same ole place as she ever was, and with more pain from the surgery she had had. (Headaches)
    I for one do not believe in it. It suposedly had been "discovered to cure fibromyalgia" from a male doctor who had fibro, and had this Chiari Malformation, and he went to a surgeon friend of his to have it fixed, and was cured!
    Mind you, there are people that have Chiari, and there are people that have both Chiari and Fibro, and yes, the surgery may help some people, but, IMO it's too risky in itself to chance really. Anytime a surgery doesn't make us fibromites feel better, it most certainly makes us feel worse! I for one, never had pancreas problems until I had my gall bladder taken out. Now I take 12 pills a day, JUST for my pancreas, have to watch my diet, and have to keep my weight down (due to the risk of diabetes).
    I don't know. Just my $.02 on the subject. (well, and my neuro's---lol)

    Medic
  5. 2girls

    2girls New Member

    Thanks Pearl - This is great info. I do have all listed symtoms. It is worth researching.
    Medic - Thanks for yr input as well.

    2girls
  6. pearls

    pearls New Member

    Well, I don't know about the surgery. I've posted several messages having to do with my concern about surgery for people already diagnosed with fibromyalgia. It seems to me that if surgery can be one of the things that bring on fibromyalgia, it certainly might be something that can make fibromyalgia worse!

    However, what does interest me about the possible connection between fibromyalgia and a narrowing of the channel through which the spinal cord goes, is the possibiliy of THERAPIES that might help. The article, "Chiari Malformation and Fibromyalgia," by Dr. Sudhakar Sridharan refers to possible management of the condition "through a process of continued re-evaluation by the multidisciplinary team," with the most appropriate therapy sought on a case by case basis. (Wouldn't it be nice if our specialists would actually talk to each other?)

    I think there may be something to it. As I pointed out before, the National Fibromyalgia Research Association is currently researching the possible connection between fibromyalgia and Chiari malformation and/or compressed cervical spinal cord to the tune of $150,000, which I believe is a lot in the underfinanced world of fibromyalgia research.

    There is also another article, "Fibromyalgia and Chiari Malformation," by Jeff Durbin. Durbin says that Diane Mueller, N.D. and John Oro, M.D. of the University of Missouri Chiari Clinic, urge caution in assuming we fibromyalgia patients have Chiari malformation. Don't assume there is a cure out there for fibromyalgia.

    Anyway, these two researchers say that if people believe they have Chiari malformation, they should undergo a basic neurologic exam from a neurologist or neurosurgeon experienced at diagnosing Chiari. That, plus an MRI of the brain and brainstem will reveal it if it is there.

    Again, I think the operative words are "experienced at diagnosing Chiari." Some medics, inexperienced in certain areas, nevertheless render opinions that are sometimes - shall we say - out of order - because they don't necessarily know what they are talking about. (Years ago I ran into such people when I was a singer plagued with vocal cord nodules. Just because a person is an otolaryngologist doesn't necessarily mean he knows everything singing voices and how to take care of them.)

    -Pearl
  7. pearls

    pearls New Member

    Well, I told my pain doctor today about having no gag reflex anymore and he said it was probably my meds. When I brought up the possibility of of a neurological problem, he said that's possible, but most likely it's the meds.

    End of story....at least for now.

    -Pearl
  8. ssMarilyn

    ssMarilyn New Member

    :) I can stick my finger down my throat no problem, but when I brush my tongue, I gag. Go figure!

    Marilyn :)