Re Cheryl Chiari Sx

[Guest guest]

Cheryl,

First, I would like to thank you for clarifying your Ampilgen experience.

Secondly, for your time in sharing the information re: Chiari Malformation.

Most of all, I wish you the very, very best in your upcoming surgery and that is

truly from the bottom of my heart. What you are about to embark comes from pure

courage, faith, and wonderful trust in your doctor.

The list of symptoms you have shared with us is quite an eye opener. I thought

I would share this insignificant experience, though in light of the research of

Chiari Malformation, I though it may have significance.

I can't remember exact dates, but at one point of a 10 year history with CFIDS I

developed tremendous pain in the shoulders, but primarily in the neck, up to the

lower part of the head. I had all the tender points of fibromyalgia. I spent

years in agonizing pain with only NSAID for relief, which did nothing for me.

As one who was very " conventional " medicine oriented, the suggestion of seeing a

chiropractor was equal to telling me to see an accupuncturist. Having worked

neuro surgery at one point in my career, chiropractic medicine was not an

option. Finally one day, years later, I was losing more and more range of

motion to my upper body due to pain and muscle and joint ankylosis or rigidy.

In desparation I finally decided to try chiropractic therapy. First working out

the areas of C-3 to about T-2 which is mid neck down to upper back, then 3 to 4

weeks into treatment C-1 at the occipital axis was manipulated with a profound

release. From that point on my fibromyagia pain improved by 80%. My POTS went

away almost completely, I would say by 90%. Continued treatment continued to

abate those symptoms.

I am now wondering if more of us might have a much lesser degree of a

compression problem, without actual prolapsed, but enough to encroach on nerves

in the lower brain stem that could contribute to these same symptoms. Just a

thought.

Best wishes to you and to all.

>>Your question regarding pain is a very subjective and personal area of

health. Some of us have higher pain tolerance and of course we are all on

differing meds that may hopefully manage the pain for some. Of assistance to

me, with the brain fog rolling in often, I have kept a journal with a scoring

system of daily pain, including any tasks that I couldn't perform, if I was

bedridden all day, etc. I used the 1 to 10 scale for no pain to excruciating

pain. It really was an eye opener when I charted all.

As in CFIDS, not all Chiari patients suffer the same set of symptoms all of

the time. I have found that a Chiari flare is an occipital headache that can

radiate into the shoulder girdles and behind the eyes. It is a feeling of

pressure and little balance with difficulty holding my very heavy 25 lb. head

upright. Then, I have to get horizontal immediately, despite being on the

Fiorinal and potassium to level my BP out from the NMH & POTS. But, I have

been told by Kaiser, for instance that she did not have headaches.

Below are some of the symptoms listed in a May 1999 Neurosurgery article

entitled... " Chiari 1 malformation redefined: clinical and radiographic

findings for 364 symptomatic patients. This study was done by Dr. Milhorat

along with other neurosurgeons at The Long Island College Hospital.

The symptoms of Chiari or spinal cord compression according to Milhorat

included:

-Headache in the back of the head that may radiate behind the eyes and into

the neck and shoulders

-Disordered eye movements with vision changes

-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 ( I am having a sleep study next week, as this can actually be

dangerous in Chiari patients)

-Speech impairment.

-Hearing loss

-GI problems, IBS and frequent urination.

-Lack of gag reflex and difficulty swallowing.

-Symptoms are exacerbated by exertion, and especially by leaning the head

backward or coughing.

-And, to quote--- " Dr. Rosner believes that NMH, which is associated with

CFIDS, may well prove to be " a good objective marker " for cervical stenosis.

The real diagnostic clue is anything that signals neurological

impairment--abnormal reflexes, tingling in both arms or both legs, shooting

pain, urinary frequency, inability to stand on one foot, ataxia (coordination

problems), dropping things out of the hands. " I had the most through neuro

exam with him since my injury of four years ago.

" Symptoms from these conditions often don't develop until adulthood, when the

compression may grow more severe or may be triggered by an injury such as

whiplash, surgery that involves hyperextending the neck, or prolonged

coughing. Thus, onset of symptoms may be gradual or sudden and symptoms may

vary widely according to the individual. "

" NSGs who perform the surgery report that most patients experience

significant and broad improvement of symptoms, beginning almost immediately

following surgery and progressing with time as the spinal cord recovers from

the compression. ( I believe the figure for nerve regeneration is one cm a

month, with the two year time marker as the maximum for regeneration) WHILE

IT IS NOT AT ALL CLEAR WHETHER SURGERY CAN RELIEVE ALL THE SYMPTOMS

ASSOCIATED WITH CFIDS AND FMS, SOME FIBRO PATIENTS WHO HAVE UNDERGONE THE

DECOMPRESSION SURGERY HAVE REPORTED THAT THEIR TENDER POINTS COMPLETELY

DISAPPEARED. "

" we're looking at this as a subset of patients, " Dr. Rosner said.

" Fibromyalgia and chronic fatigue syndrome may be many diseases, but clearly

there is a big chunk of them who may be surgical candidates. "

This is an interesting quote from Dr. Milhorat, who published a paper in May

99 in the Journal Neurology. " Of 364 chiari patients he surveyed, nearly 60%

had a prior diagnosis of fibromyalgia, 12% of chronic fatigue syndrome (I

forget who mentioned that Chiari was closer related to FMS, so this is true),

31% migraine or sinus headache, 9% MS and 63% psychiatric or malingering.

In another study, Dr. Rosner reported that 20% of the fibromyalgia patients

he examined had cervical compromise. "

" A research linking Chiari and cervical stenosis to fibromyalgia is being

submitted to the American College of Rheumatology for possible presentation

at its upcoming meetings. "

There is much more informative information in this article under PUBMED. The

site is: http:www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=10232534 &

form=6 & db=m & Dopt=b

Dr. Rosner's excellent nurse is Yvette and the tele number is ( 828) 693-3015

and his address is....724 5th Ave. W., ville, NC 28739. He is

temporarily with a Dr. Flechas, until his complex is built adjacent to Park

Ridge Hospital.

He does surgery three days a week and is booked two months ahead. I really

admire the genius of this man. He even gave me his tele # at his residence,

in case I got to a paralyzing problem.

Do let me know if I can be of further help in any way.

Thank you for your response.

Cheryl<<