Chiari or MS, or both

[KatMW]

Do the following symptoms indicate Chiari, MS, or both?:  Intense, debilitating headaches, Intense burning sensations from the top of the head into the neck, inability to focus, hand tremors, dizziness, extreme chronic weakness, syncope, loss of use of the hands, Loss of use of foot, strange sensations of many needles in the feet (as when your leg 'falls asleep'--but lasting for hours), legs, hands and arms, weak pulse, so weak that BP machines have difficulty reading, uncontrolled side to side eye movements, difficulty swallowing, ringing in the ears, loss of feeling in the face, especially when riding on a rough road in a car, Extremely cold hands, hypersensitivity of the hands to warmth and cold, one hand abnormally warm while the other is cold to the touch, severe burning sensations in the feet or hands.  4mm cerebellar tonsillar herniation & CSF flow problems on one set of tests, no herniation or flow problems on another set.  Scheduled for surgical removal of bottom rear portion of the skull on Jan 22, 2008.  Thanks for any help or guidance,  Mike

[Godofredo MD]

Hi.

How old are you now? Most of the symptoms can occur in both multiple sclerosis and Chiari malformation so it will be difficult to determine whether MS, Chiari, or both, is/are the cause of your symptoms.

Was an MRI done? An MRI is the definitive diagnostic tool for visualizing Chiari malformations so if it is seen on this imaging modality, then Chiari would be the likely cause of your symptoms.

You should talk about this with your surgeon to help you understand your condition more.

Good luck.

[patsy10]

I have all sorts of neuro symptoms such as you have described but not all of what you listed.  I have Chiari 1 5mm which is just slightly more than you have listed above.  I saw several neuro's regarding these symptoms.  My MS testing has all come back normal.  Every doctor I saw said there was no way a mild degree of chiari like this will cause these symptoms.  In fact, one said that the degree mine is could be considered a variant of a "normal finding" on MRI.  It was an incidental finding according to the neuro.  Anyway, I hope you have gotten at least one second opinion on the surgery.  That surgery is huge!  and not to be taken lightly.

[patsy10]

Also, I think the CSF flow study should be repeated as it sounds like the findings were contradictory.

[KatMW]

I am 44 yrs. old.  I have had 4 MRI.  The 1st Neurosurgeon I saw referred me to Dr. Oro in Denver CO.  of the Chiari Institute. Dr. Oro felt that the 4mm drop was borderline, however my symptoms are not.  Also we have learned that a radiologist can read an MRI one way and the next one can read it the other way, so with that being said Dr. Oro went through everything with us (my husband and I) and so my decompression surgery is a go, and again with that being said I also have "demylinateing processes" going on, so there may be more issues going on.  So that is where we stand right now.  Thanks in advance for any input you can offer.

Kathy and Mike

[KatMW]

I have copied some comments to DrGodofredoMD from me, and from him to me about a related question:  12/24/07 I asked:    Is there a definitive, 100% effective way to positively diagnose MS?  Can it be ruled in, or out, 100%?    The "Comments" posted below are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum.  ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any "Comments" posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
DrGodofredoMD

12/24/07
KatMW  Hi.

Unfortunately, the answer to your question is NO.

There is no test specific to diagnose multiple sclerosis. The diagnosis is based on medical history, physical and neurological examination, cerebrospinal fluid analysis, MRI, evoked potential studies, and repeated observations over a period of time.

Hope this answers your query.  
KatMW


12/24/07:  to: DrGodofredoMD  Unfortunately it does.  I have heard that a lumbar puncture and CSF analysis is 90% accurate in detecting MS.  Any comment on that?  My wife's neurological are very numerous, and debilitating, but a lumbar puncture is not recommended for someone with Chiari symptoms.  We plan to let her recover for a couple months from the removal of some lower rear skull bone that is pressing on her cerrebellum before we schedule a lumbar puncture, CSF pressure test and analysis of the fluid.  Does that sound like a good course to you?

Thanks for the expert input.  It is not easy to come by.  

I really appreciated how plain his words were.  You may appreciate what you can learn looking up "Chiari" on the web.  I will try to convey my favorite Chiari sites in my next post to you (the last time I left this page I lost everything I had written to you).

Mike

[KatMW]

Chiari Sites: http://www.northshorelij.com/12.cfm  Click on “Videos” for fabulous instruction! http://www.chiari-syringo-news.com/index.htm  excellent for symptom listings by percentage of sufferers! http://www.chiaritimes.com/ChiariTimes/Chiari_Times.html http://www.chiaricare.com/index.php/Content/Chiari-Malformation-Clinic-Contact-and-Trave-Chiari-Type-1-Malformation-Diagnosis-Treatment.html  This is where my wife will have her surgery in late January

I hope some of this info helps you nail down an accurate diagnosis.  Remember, according to Dr. B on the Chiari Institute's fabulous videos, 5mm or more means nothing with regard to symptoms.

Mike

[patsy10]

Thanks Mike.  I'll check those sites out.  I would rather have the Chiari than some other possibilities.  I have had numerous tests to rule in/out MS.  MRI's, spinal tap, EMG's, evoked potentials etc...They all came back normal.  I saw  6 neuro's, including an MS specialist.  None felt it was MS. Incidentally, when they did my spinal tap they got very little fluid because my spinal pressure was so low.  The radiologist said he had never seen anything like it.  I ended up admitted in the hospital from severe pain afterwards.  Makes me wonder about obstruction of the CSF flow.  I didn't know I had the Chiari at the time.  The neuro had called me the results of my MRI and just said it was "unremarkable".  The Chiari showed up on both cervical and brain MRI's.

Patti

[KatMW]

My impression is that they measure the CSF pressure with a manometer when the do the puncture.  Has anyone told you the 'number'.  Have you had a 'CINE' MRI (a CSF flow study)?

Mike

[KatMW]

By the way, some Chiari specializing neurosurgeons will review your MRI films or CD's for you at no charge.  The reason is that they don't treat anything but Chiari, so they help you while helping themselves screen patients.  I am fairly sure that the Chiari Clinic (Dr. Oró) in Aurora, CO does that.

Mike

[patsy10]

I just finished looking at those websites.  Interesting.  My pressure was too low to measure.  I think the intracranial pressure is elevated with the Chiari but the pressure is low below the Chiari because of the blockage of CSF.  I live in Ohio.  I believe there is a Chiari specialist at Cleveland Clinic.  I kind of dismissed this as a cause for my symptoms because the neuro's were unconcerned.  I developed the Chiari within 6 months of having a cervical spine fusion.  It was not present on the pre-op films.
My symptoms are: headaches, head pressure, numbness and tingling all over, neck and upper back pain, visual disturbances including blurred vision and pressure in my eyes.  I can actually see and feel my pulse in my eyes.   It gets worse if I bend over or squat down.  I actually feel like I will pass out.  I  see stars.  Muscle twitches, muscle pain, leg and arm weakness, fatigue, insomnia just to name a few.  My only diagnosis is fibromyalgia which I feel is a joke.

[KatMW]

I would suggest that you call The Neurosurgery Center of CO:  303-481-0035 Dr. Oró

john.***@****

You can send him a CD of your MRI's and he will tell you if he thinks he can help or not.

Mike

[LifesAHeadache]

PLEASE SLOW DOWN WITH THIS - I'M NOT A DOCTOR BUT THIS DOESN'T SOUND RIGHT.  A lot of this is weird.  Chiari I is rarely surgically treated - by removing the lower part of the brain - I assume the herniated tonsil.  THAT IS HUGE APPROACH.  Chiari doesn't just come and go off of MRI's.  Any heavy duty Neuro could care less about what a scan reader says - they go through the scans themselves.  Have you tried large doses of Diamox?  Did they try a shunt to drain off the CSF into the abdomen? I would go to a respectable Chiari specialist at a teaching hospital who is board certified for a second opinion.  Sorry to interrupt your conversation but I am worried about this doctor's approach.  I know the pain - believe me I know the pain.

[KatMW]

http://www.chiari-syringo-news.com/index.htm
http://www.chiari-syringo-news.com/subs%20only/Volume%201/Issue%201/tonsillectomy%201(1).asp

I neither endorse nor disdain the method of removing the cerrebellar tonsils, but I thought I would give you these addresses so you can read about the 'controversial' method.  Success is what matters, and getting back one's life.

My wife's surgery will be with one of the foremost Chiari surgeons in the world, Dr. Oró in Aurora, CO.  I think he performs whatever steps he thinks will help the patient, but makes an effort to preserve the tonsils because no one is sure of every function they have in your brain:

Check out the following on website:  http://www.chiaritimes.com/ChiariTimes/Blog/Blog.html

"Some persons with the Chiari malformation complain of problems with working memory, multitasking, and word finding, functions not normally thought to reside in the posterior fossa. What is the basis for these complaints?

The gross anatomy of the cerebellum has been known for many years and the role of the cerebellum has been considered to be coordination of motor function. However, in the past two decades our understanding of the cerebellum has blossomed and there is now evidence that it plays a..." (cont. on another page)

http://www.chiaritimes.com/ChiariTimes/Blog/Entries/2007/11/16_The_New_Cerebellum.html

I have of late been corresponding with someone who had surgery in Pittsburg some 13 days ago, and they specifically chose their surgeon because they wanted the 'offending' 'causal' part of their body removed.  She (I think) is doing great so far.  She also had part of a vertebrae removed, as well as a piece of skull.

I can't say that one method should or should not be considered, but I would prefer my wife keep all of her brain unless there is something physically wrong with part of it, as the UCLA doctor says he suspects (BUT HAS NOT YET INVESTIGATED SUFFICIENTLY AS OF THE WEB POST MENTIONED ABOVE)

Anyone who wants to know how things turn out for my wife has only to ask for the report after her Jan 22 surgery in Aurora.

I hope somehow that some part of this helps someone in at least some small way.

Mike

[KatMW]

http://www.chiaricorner.com/showthread.php?t=5

I have been investigating the pros and cons of removing the cerrebellar tonsils with a person who has recently set up the forum at the above address.  

Her photos are impressive as to how good she looks after only 12 days or so.  You may be able to contact her through the site.

Mike

[patsy10]

I  hear you.  None of the neuro's I saw thought it was causing any of my symptoms.  I agree.  The surgery is HUGE!  No.  I would only have it done as a last resort.

Mike and Kathy,  Has lyme disease been ruled out?  It can cause all sorts of neuro symptoms including demyelination.

[KatMW]

I am not sure anyone has ever checked specifically for that, but doesn't that start with a round mark of some kind?  I will do some research on it.

Thanks,

Mike

[patsy10]

Less than half of people ever remember a bite or rash.  The symptoms mimick MS but often MS testing comes back normal.  I had 3 bullseye rashes years ago ( the bullseye rash is diagnostic in itself if it is seen by a docotor)  and have never been really normal since.  Testing is very difficult as there are many false negative tests.  I have never tested positive but I have improved on antibiotics.

[beentheredonethat2x]

My daughter had an MRI that showed cerebellar herniation of 5 1/2 to 6 1/2 mm. (different readings depending on which person reads the MRI & exactly where they measure from) One neurosurgeon felt that she was a mild case and surgery wouldn't help her symptoms. He sent us home to our f.p. who referred my daughter to an infectious disease specialist to rule out any obscure illness. She  checked out fine. Her symptoms progressed...headache, neck pain, dizziness, tingling on her left side hand and foot, and recent diagnosis of scoliosis. You may or may not have a Chiari I malformation, but the decision to operate should not be based on your MRI alone, but on your MRI and the severity of your symptoms. You HAVE to be your own advocate and keep searching until you find a doctor who diagnoses you and presents you with a treatment plan. Don't give up!