MRI findings

[Becky]

I was diagnosed with r/r MS in 1982, and have been taking Avonex for approx. 2yrs.  I have been having bladder urgency for about 1yr. and treated with detrol. I have recently (about 6 mos.) had swallowing difficulty.(food just does'nt want to go down) and some numbness in my arms. I also get numbness in my feet when I walk very long. I'm having trouble bending my neck down toward my chest. My Dr. ordered a cervical MRI, and the impression was:
1.Suggestice of Chiari 1 malformation.
2.Small disc bulges or small herniations
at C4/-C/5 and C/5-C/6.
3. Abnormal bright signal in the T/2 vertebral body likely incident to a benign hemangioma.
I also had 3 new plaques on the parietal lobe (left) when I had brain MRI.
Is any of this anything to worry about or should I just chock it up to MS. If it is anything to be concerned about what is the best treatment? Iam very actively working 40+ hrs wk as an Echosonographer
but I feel as I'm slowing down. My husband tells me I'm starting to forget things.  Thank you very much.

[Eric]

You may need to think about chiari type I not causing symptoms. Call doctor milhorat and ask him if chiari I has symptoms. Just because you are a doctor doesnt mean you have all the answers. You must continue to learn every day and not think you have become god.

thanks
eric

[Leah]

I startted seeing one of three Neuro's last spring, only to find out by accident looking at my MRI's that I have Chiari.  Only one of the three doctor's I saw ever had mentioned it, I have a appt. tomorrow with a Surgeon.  I don't know how bad my Chiari is, I can remember back to cheering in grade school and getting these heated what I would call HEADRUSH.  Not a headache, it's different. If you stop close your eyes and grab hold of whatever is aroung it will go away.  Symptons have really come on strong about a year ago.  Loose feeling in hands, ringing in ears, eyes twitching, I could go on.  I'm only 33 years old and I'm afraid if I don't have surgery it will only get worse as time goes on.  If anyone has any answers or any input I would love the e-mail.  ***@****.
Thanks for your time.

[Leah]

I startted seeing one of three Neuro's last spring, only to find out by accident looking at my MRI's that I have Chiari.  Only one of the three doctor's I saw ever had mentioned it, I have a appt. tomorrow with a Surgeon.  I don't know how bad my Chiari is, I can remember back to cheering in grade school and getting these heated what I would call HEADRUSH.  Not a headache, it's different. If you stop close your eyes and grab hold of whatever is aroung it will go away.  Symptons have really come on strong about a year ago.  Loose feeling in hands, ringing in ears, eyes twitching, I could go on.  I'm only 33 years old and I'm afraid if I don't have surgery it will only get worse as time goes on.  If anyone has any answers or any input I would love the e-mail.  ***@****.
Thanks for your time.

[CCF Neuro[P] MD, RPS]

Dear Jim:

I would see your neurologist and have a thorough neurological examination.  

Sincerely,

CCF Neuro MD

[Jan Hemeon]

I have been diagnosed with Fibromyalgia and recently sae the 20/20 program on a possible link to stenosis and Chiari Syndrome.  I have been experiencing a rather odd sensation in the last few years and am wondering if it could be considered neurological in nature.  Whenever I am listening to someone talk to me on the phone the inside of my head seems to jump at each sound and my vision jumps along with it.  Is this a sensation anyone else has experienced?  Also I have been having problems with slight choking on liquids and solids.  Any info would be appreciated.  Should i request an MRI?

[CCF Neuro[P] MD, RPS]

Dear Sara:

Yes, the area of the brachial plexus should be in the shoulder MRI.

CCF Neuro MD

[Sara]

I had a MRI of my shoulder and than later on of my neck.  Would the brachial plexus also be included?

[jennifer]

Greeting at Cleveland Clinic!
I have an ACM malformation and syringomyelia, and have many health problems from these conditions. I will be visiting a neurosurgeon at Cleveland Clinic for these problems this month. I am having constant headaches, nech aches, back aches, ear/balance problems, vision, coordination, etc etc.  I have had decompression surgery and wonder what the next step could be- I am a bit nervous!  Should a flow study be done- I am deteriorating rapidly.  Thanks for any input or ideas you may have.  Thanks!

Jenn

[CCF Neuro[P] MD, RPS]

Dear Eurico:

Some patients had MRI scans for seizures, muscle disease, tumors, trauma, metabolic disorders etc.  None of these diseases had anything to do with the Chiari I malformation.

CCF Neuro MD

[Eurico]

Hi CCF Neuro,

You mentioned you have hundreds of patients with Chiari I malformation who have no problems. Being patients of Neurology, what types of problems/symptoms do these people have which merit MRIs of the brain (which is the only way to best diagnose Chiari I)?

Thanks.

Eurico

[CCF Neuro[P] MD, RPS]

Dear Annelise:

We have several hundred patients in our practice who have Chiari I malformations with no problems.  We have a few who have problems.  I am really sorry that you have such problems and needed surgery.  As with anything, it is the disease that affects the many that research is done.  With the other diseases, things just go slower.

Sincerely,

CCF Neuro MD

[Anneliese...CCF Docs,4 pts With ACM, 2 h]

Hi CCF,  Alot docs tell the majority of patients who have ACM that is doesn't produce symptoms.  Usually, in cases of ACM 1.
Two of these patients have MS and ACM.  One being Sarah who has inactive lesions and which her doctors had to beable to tell the two conditions apart for which were causing the problems.  

She was decompressed and noticed improvement..but, the delay in treatment did not help her.  She sees both a neurosurgeon and a neurologist for continued treatment of both conditions.

The other story is Eurico's daughter who also has ACM had alot of difficulty trying to seek treatment for his daughter.  She too went from specialist to specialist until someone finally did her surgery...again, the delay causes more problems.

Me I went three years trying to get someone to aknowledge ACM type 1,  I saw 4 neuros and a nsg then luckly a specialist who I wrote to via the internet who has written articles on ACM gave me a name of a nsg in my area specializing in ACM cases. Well, after proper assessment and CINE study of my csf flow, little flow was observed past my fornum magnum.  Was decompressed two months later.  The delay of three years of compression on my brainstem caused permanent neurological deficits.  I now have to have repeat surgery to alleviate some of these problems.

These stories go on and on,  I know this condition is not black or white.  But, their is attempts by a few researchers at INN, Beth Israel, UCLA...Dr. Milhorat, Dr. Rick Abbott and Dr. Batzadorf trying to help these patients.  They are being overwelmed with all these desperate patients trying to get into them for treatment.  Is there only three docs in US that know ACM causes symptoms?  Why is there not more research in this area?  
What can I do and the other patients and their parents to make a difference in this area inorder for we can save ourselfs from the effects of ACM?

Thanks, Sincerely, Anneliese

[Eurico]

Becky.

My daughter had progressive symptoms from infancy. Only when she was 5 years old, did we obtain a Chiari I malformation diagnosis. Only one other doc concurred. Over a dozen neurosurgeons and radiologists said "no Chiari" after reviewing the MRIs. Due to her worsening situation, we opted for posterior fossa decompression surgery. All but 2 problems drastically improved or were alleviated. Symptoms which greatly improved/vanished were:

swallowing problems
numbness/tingling in extremeties
oculomotor and vision problems
hearing problems
apnea/sleep apnea
choking/gagging
headaches
constant fatigue
neck/shoulder pains
trembling of body
profuse sweating of head
leg pains/weakness

Bladder/bowel control problems didn't improve, but these may be related to a previous tethered spinal cord. I would encourage you to read the article by Milhorat et al published in the May 1999 issue of Neurosurgery - it's entitled "Chiari I malformation redefined". This paper is available at:

http://www.chiaripaper.cjb.net/

Chiari can cause many potential symptoms. It's posted at many web sites of established medical organizations, such as the American Assocation of Neurological Surgeons and the National Institutes of Health, not to mention many Chiari articles from all types of medical journals. Join the World Arnold Chiari Malformation Association (WACMA) web forum/mailing list at:

http://www.pressenter.com/~wacma/

to learn more. If you click on Support, you can join. Post questions. There are lots of very helpful people who've had years of problems obtaining proper diagnosis. The reason is that most docs don't really understand Chiari well - they insist on a minimum of 5mm tonsillar herniation - the only criteria they look for when making the diagnosis. The experts know to look for other factors, such as occipital bone defects, CSF flow restriction, size of the posterior fossa, etc. Milhorat's paper mentions these.

Some other doctors have found that you can have spinal stenosis (usually cervical) which looks minimal and insignificant on MRI but is in fact significant to symptoms - these docs have a specific MRI protocol and they do measurements to properly evaluate it. Again, WACMA can help you locate these docs because most docs consider this insignificant, as they do with cases with less than 5mm tonsillar herniation being significant to Chiari symptoms.

I don't know much about MS, but I do know that Milhorat found a certain percentage of Chiari patients previously misdiagnosed with MS, among others. I'm not saying you don't have MS, just relaying what I've learnt. Many symptoms are common between them. And, yes, Chiari can cause swallowing (dysphasia) and numbness symptoms - it appears in Chiari medical articles and many WACMA members have mentioned it.

Oh yes, my daughter had NO tonsillar herniation but had occipital bone defects and CSF flow restriction. Her cerebellar tonsils were underdeveloped due to contrictive forces as a result of a small posterior fossa due to an underdeveloped occipital bone.

Result of surgery proved the 2 out of many doctors right with the Chiari diagnosis. Our daughter continues to do remarkably well one year post-op.

Good luck in your treatment. Best regards,

Eurico

[sarah]

Hi , im sarah , the woman ann posted her comments about ....she is right ..i have both ms and chiari ..extensive testing sorted things out , after i was told the chiari wasnt the problem by a neurologist not current on chiari for years .....like ann stated , this delay caused me signifant permanant dammage , and could well have been evaluated by a neurosurgeon when both were first found , saving me from much harm . Please do seek a neurosurgeons evaluation too ....my chiari " looked insignifant " and was read on mri to be about 5- 7 mm, my ms looked mild for years .

Cine study showed significant blockage of csf flow ....and one symptom that resloved following surgery was severe aspiration spells while trying to swollow ! I did gain major improvements in other areas as well ....and recent testing to reconfirm the ms did show all postive results for such , but it still appears mild and not progresing signifigantly .....this is a ticklish mess to sort through ...but more and more of us with both conditions are being found now .....i hope you will seek a doctor with current understanding of both conditions , and learn more about chiari before putting your questions to rest .

i can fully credit the World Arnold Chiari Malformation Association (  http://www.pressenter.com/~wacma/  ) and the American Syringomyelia Alliance Project
( http://www.asap4sm.com/) for helping me get to good care ....i live in a rural area , and unfortunatly the doctors around here are not current in understanding chiari . I sought an expert in both , and found this through a major teaching hospital quite some distance from home .

my herniation was actually about 12 mm , when i got to a chiari knowledgable doctor ...without the suport and guidance of the above two organisations , id still be here , getting worse , and seeing doctors who didnt have a clue .

thanks for the opertunity to share my concern and validate anns posting ....id be glad to discuss this more , and can be reached at wyvernnc @ aol.com .

sarah in paradise from the wacma suport group.

[Becky...I have Chiari 1-pls read my stor]

Hi Becky,   I am just a patient who has been from one doc to the next for many years with symptoms of MS.  I found out I had Chiari 1 malformation on my mri results which no doctor ever told me.  My docs refused to analedge this condition of being the cause of my problems..instead thought it was MS, ran me through all the MS tests...including the LP-there is some discussion of Lumbar pucture making the hindbrain herniation worse if you have not been decompressed.  The Lp made my herniation worse and started to physically decline.  

I finally changed my hmo insurance to get refferal to a neurosurgeon to evaluate my Chiari malformation.  I had what is called a CINE Flow study...which tells if there is an obstruction of csf flow around your herniation of your cerebellar tonsils. I had very little flow of csf.  I was schedule for a Occipital Craniectomy for decompressing my posterior fossa.  I did well after 5 mos. post op but now have neurological problems again. Going in for surgery for Dural Plasty...To make all this short for what I trying to tell you.  The delay in having my surgery caused me permanent damage to my brainstem and spinal cord.  

Have you been refferred to a neurosurgeon for your Chiari.  Chiari and MS have alot of similar symptoms.  Not saying you don't have MS.  A friend of mine has both conditions, which her MS is not active and it is her Chiari giving the problems.  One way to tell this is have a CINE Mri Flow study....they put a pulse oximeter on your finger and basically watch your CSF Flow like a movie to the action of your heart rate.  

Try visiting this website for info on Arnold-Chiari Malformations.   Just patients with a rare disease, the majority of us were told our Chiari was not symptomatic...by doctors..until, we found a neurosurgeon who sees these in his/her practice.

http://www.egroups.com

Pls, feel free to write me if you need a list of docs in your area who specialize in Chiari Malformations.

Take Care,  Anneliese

<***@****>

[Becky,Forgot Something!!]

Here is my email if you have any questions...

***@****

Hope this helps you!!

Take Care,  Anneliese

[CCF Neuro[P] MD, RPS]

thanks for the comment.

CCF Neuro MD

[ellen february 27,2000]

my last mri showed L-5, 3 and 4 as being bad disc.  my doctor says a discogram is needed to determine if fusion can be done.  If 2 or more are positive fusion cannot be done.  what other options are there?  My condition DDD has greatly worsened over the past year.  By the end of the day I can barely walk without severe pain.  any suggestions? Why can't two or three fusions be done?

[CCF Neuro[P] MD, RPS]

Dear Becky:

Sorry to hear about your MS.  The good news is that your MRI did not show demyelination lesions in your cervical cord.  The Chiari malformation would not cause swallowing problems and from the writing of the description it doesn't seem to be a true Chiari.  The vast majority of time, a Chiari I malformation does not cause problems.  The small bulges are likely not causing any current problem.  The three new plaques may be apart of the problem, but without seeing the scan I can't tell.  I think the easiest thing is to tell you that it is your MS.  It may be a good idea to talk to your neurologist and let him/her know about what you are experiencing.  

Sincerely,

CCF Neuro MD