Chiari I Malformation and 2nd Opinion

[PhoenixFire454]

I go to a Migraine Clinic at one of the top universities at the request of my neurologist because my migraines were getting worse and involved occipital headaches and neck pain. The Migraine Clinic, after eight months, referred me to their own specialized headache doc, with a recent Brain MRI in hand showing a Chiari I Malformation of 5mm. I explained to him my additional history of the last six months in the hands of a number of other specialists involving tests and procedures for bowel incontenence, problems with motility, urinary retention, neurogenic bladder), tinnitus, upper arm neuropathy, and a number of other problems. The new physcian more or less brushed off any idea that the Chiari Malformation was causing any problem at all, in spite of previous injuries to both my cervical and lumbar spines, also including surgeries.  Instead he is planning occipidal lobe injections at three month intervals, and an increase in medications that I am already taking with no real benefit. Not only am I concerned about receiving addition injections of this type, (I already receive them every three months in my S.I. Joint from the Pain Clinic at the same university), I am concerned that this is not the best treatment under the circumstances.  Any input would be greatly appreciated.

[Quixotic1]

This isn't my area of expertise, so take what I say with a grain or two of salt.  How old are you?

The concern with multiple neurological complaints and a Chiari I Malformation is that those symptoms may likely be caused by the CNS abnormal structure.

Do not be brushed off!  When Chiari I is symptomatic (and it usually isn't, but definitely CAN be) it needs thorough evaluation.  There are several people here on this board who will testify vehemently to this.

THE COMMONEST COMPLAINT IS OCCIPITAL HEADACHE and headache that worsens with bending over, coughing,

Also seen (though I suspect you've done you're own research) upper arm numbness, dizzines and balance problems (the tinnitus fits here) And many other things.  If it is the malformation causing your other problems and it is not treated, you run the risk of permanent disability, brain damage and death

With a prior history of back trauma whcih could render an assymptomatic Chiari I symptomatic, I would insist on a thorough neurosurgical evaluation.   I think you should probably get an MRI of your entire sine.   I strongly feel this should be your 2nd opinion.  Your gut instinct is probably right.  These are symptoms that should not be brushed off.

Good luck, and please come back and let us know what is happening.  There are a lot of people that come tho this forum with similar complaints.

Quix

[Quixotic1]

Sorry, I forgot a couple of nice sites for info.

http://www.neurosurgerytoday.org/what/patient_e/chiari1.asp

http://depts.washington.edu/neurosur/chiari/chiari_symptoms.htm

These sites also list tinnitus and incontinence specifically.  But, beyond that, the whole picture needs to be addressed.  Could all of these things be more indicative of another process, like MS?  And the could mild Chiari Malformation be a "red herring?"

My prior rec still remains.  Quix

[PhoenixFire454]

Thank you for your input. I am 53 years old. I have suffered numerous traumas to my neck and back (I trained horses), but the most recent injury was a whiplash about three-four months ago from a vehicle accident. My husband began to notice that I was dropping things, tripping over everything, forgetting what I was starting to say, snoring, and the list goes on. After reading your reply, we are planning to contact the Neurosciences Dept. at a different university near us, to get a 2nd opinion. I well definitely post the results of that contact as soon as we hear anything from them, and I am hopefully scheduled for an appointment in the near future.

[patsy10]

I have multiple neurological symptoms just like you.  I have a history of c 5-6 fusion.  I also recently found out I have a chiari 1 malformation of 5mm.  I have not been able to find a definite cause for all my symptoms.  I was also told the mild chiari was not causing all my symptoms.

[Quixotic1]

I didn't remember that.  Or if I did read it, it was before I researched it and learned more. (like in the last 2 days)  Apparently  Chiari I usually is NOT symptomatic.  But I found all sorts of info on how it shows up when it does become symptomatic.  Did you look at those two sites I posted above?

Ooops! did I give out bad info?

I figure after 3 or 4 years of trying to answer questions I might have more accurate knowledge at the ready.

Quix

[patsy10]

Hi QUIX,

I didn't mention the chiari recently because I was told it was not significant.  Funny thing is,  It was not present when all this started in May of 2005.  The brain MRI was normal and the C-spine only showed the disc bulge and mild cord compression.  Six months later, (3 months after the fusion)  The brain MRI showed a chiari and meningioma "effacing" my cerebellum.  The neuro had told me my MRI was "unremarkable" so I didn't know about either until I got the report a few months ago.  I read your links.  One of the links I read said that even a  type 1 can cause symptoms in some people. I have many, many of the symptoms so who knows.  I even have episodes of ataxia.

How are you doing QUIX?  How are you coping with your recent MRI findings?

[PhoenixFire454]

I've begun to really study everything that I can find on Chiari I and most say what Quix told me; Chair is NOT symptomatic, but a trauma to the spine can change all of that, and abruptly at that. I have a C5-C6 lamenectomy and two L5-L6 (had an extra one there) fusions that partially failed. Throw in numerous concussions, etc. and you would think that a specialist would take my symptoms seriously, or rule out Chiari I as the cause of something. (i.e., keeping in mind the "red herring" idea).

I sent of a FAX and copy of my MRI to our closest university hospital/clinic, so I'll be waiting to hear back from them soon. The neurosciences clinic said something about cranial-spinal CSF pressure being another type of test that is done before they even begin to make a diagnosis as to whether Chairi I is mild or not. Is that something that you have had done, or did your doctors just say it wasn't the cause of your problems without going any further, like mine?

[Sherrizim]

I really don't know much about this subject except for what my younger sister went through.  What I can say is that, after several years of various symptoms which started with an intractible headache and being told by doctors that they could see nothing on her MRI, one neurosurgeon finally found a Chiari 1 malformation.  At the time, I think he thought it was 4mm.  After some thought, my sister went ahead with surgery to lift up the brain (I don't know how to correctly say that).  When he got in there, it was actually herniated much more than they had seen on the MRI.  Unfortunately, the surgery was not the magic cure she had hoped for.  I don't know if she experienced complications from surgery or if the Chiari malformation wasn't responsible in the first place for all of her symptoms.  I do know she found a forum somewhere that was just for Chiari patients, although as Quix pointed out elsewhere, it may be those with negative experiences that tend to search out such forums, and not those who have successful outcomes.

Best wishes to you!

[Sherrizim]

[PhoenixFire454]

Thank you. I know there are many complications regarding surgery, and according to a neurosurgeon I just spoke with, there is something called tethered spinal cord syndrome that can happen especially if there has been any previous trauma to the back and/or neck. He said it had to do with scar tissue and such...  Learn something new every day. Quix has a good point about the forums; guess so many people wouldn't be looking for answers still if everything had worked out perfectly.

[Quixotic1]

It is exactly the concern about a "tethered cord" that led me to advise you to be evaluated fully and not to accept the "knee-jerk" response that Chiari I is never symptomatic.

I think you're on the right path.  In medicine it so often the "assumptions" we make (and that we don't realize are assumptions) that get us in trouble.

Good luck, quix

[Quixotic1]

The symptoms of a problematic Chiari I are usually referable to increased intracranial pressure,so that indication from the NS department is correct.  I hope this evauation brings you info and a plan for release from your pain.

Patsy - I think I am doing okay with the confirmation of the MS diagnosis.  I'm am certainly more sober and introspective this week.  My L'Hermitte's sign is really causing increased awareness of the disease.  Just when I put it out of my mind, I will drop my chin and have lightning zaps into my left thigh.  I am working on not imagining what my future holds, but i am preoccupied.  so not very "in the present."

There is a very nice website discussing all aspects of MS.  It is a private site, not medical, but the info offered is well thought out and researched.  I thionk all people who feel that they fit into the MS category and who have lots of questions but no diagnosis, would benefit from bookmarking this site and reading it carfully.  It has some minor flaws and errors (but then so do I, lol)

http://www.mult-sclerosis.org/diagnosingms.html

What are your thought about having the Chiari re-evaluated?  Quix

[patsy10]

Hi Quix.  I haven't been able to post here because I could not reset my password.  I probably won't have it reevaluated any time soon.  I'm sick of doctors, neurologists in particular.  I may look at the site you posted above but it scares and depresses me.  I did read your chiari info.  I hope you are doing ok.

PhoenixFire454,

My doctors just said it's not causing my symptoms.  No one looked into it further.  You may be right though, I didn't have it until my cervical spine surgery.

Patsy