Re: Chiari symptoms and facts

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In a message dated 1/12/00 11:21:20 PM Eastern Standard Time,

ccrane@... writes:

<< From: " Crane " <ccrane@...>

Cheryl,

Thanks so much for your very informative post. Can you answer a quick

question? I've heard that Chiari patients typically have a lot of pain.

There are other aspects to your description which make me wonder if I should

have the cine MRI (I live in Charlotte, so I could see Dr. Rosner), and yet

I have relatively little pain compared to what some patients endure. Based

on what you know, what do you think? Thanks in advance.

I hope you haven't answered this question in another post. If so, I'm sorry.

I'm having trouble keeping up with the list at the moment.

And best of luck to you with the surgery. You must be looking forward to

getting it behind you and getting on with your life.

in North Carolina

>>

Hi ,

I live in Salisbury. We are practically neighbors and could visit, if one

doesn't get killed driving between the two cities on I-85. The construction

in Rowan County will hopefully help in a year or two or three.

Dr. Rosner, relocated his practice in ville, NC--A lovely city and

in fact the site where we lived prior to Salisbury. He moved there to be

closer to his in-laws for his wife and actually stated that he loves seeing

them frequently.

Thus, I will be having the chiari surgery at Park Ridge Hospital in Fletcher,

NC, which is between ville and Asheville.

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