Chiari Malformation/connection to other dx's/pain

[kass]

Thanks for any feedback you have to offer.Have posted in the past, first about my daughter (ultimatly dx'd with mito by Cohen, as well as her older brother), most recently about myself as I was being dx'd with inflammatory myopathy with complications that are making all wonder if this is really mito also. Current dx's include Psoriatic Arthritis, Polymyositis/Dermatomyositis (biopsy not clear), complications include minor heart and lung issues. Autoimmune blood work normal (ANA, etc)/biopsy read as "severe" by pathology. During a work up by the MDA doc MRI of brain ordered (suspicios of stroke) and after being told it was normal, was told this last week that it actually showed a Chiari Malformation with a 8-9mm herniation.
*If I have mito, is there a connection to the Chiari (i.e., early development disrupted by the mito)?
*If symptoms that *could* be Chiari related (some overlap with symptoms of PM/DM) are mild is there a need to see a neurosurgeon now? Or do I wait?
*What are chances of having three rare conditions that are not connected somehow?

60mgs Prednisone since August, controlled arthritis pain, but began having problems with arthritis and pain in leg muscles (calves, outside of thighs and buttocks) beginning October. Its a very deep pain and there is no relief. Both pains are now constant and are seriously impacting daily life. Pain meds not working. CK is in normal range. Started taper of Pred 3 wks ago (AFTER onset of pain). Working up on Neurontin, no relief yet.
*questions in following post*
(sorry, just cannot quite make this fit)

[NICOLE323]

A related discussion, Chiari Pain increasing? was started.

[Mommy-o]

I am 41 and recently DX' with Chiari (type I)  I have some mild atrophy of the cerebellum and seizures, not bad ones but enough that I have to be on medication.  They only get bad if I am in an extremely weakened state, (such as giving birth) then I have tons of gran mals.  I have problems with hand jerks, very ocassional hand swelling, and body jerks.  I am sorry to ask you this but based on all your testing, what do you make of my symptoms?  Should I test further?  THanks

[AnnelieseR]

Hi... I read you letter found it interesting...I don't have mitz but have ACM type 1...I had decompression surgery for it in 1999.   My symptoms started all of a sudden..with loss of feeling in arms and legs...loss of vision...severe headaches and neck pain....I had breathing problems...drop attacks...long list of unexlaimed symptoms.  It took three years to get treatment for me...after changing health hmos ..seeing numerous doctors in areas of neurology..neurosurgery and rheumatology to tell me it was chiari related..   I don't think i would be doing as well as now if it were for this group here's advice and contacting a neurosurgeon in NY via email for help...he wrote back with a list of specialist colleages that might be able to help me.

But..the waiting may have caused permanent problems for me...so..if you think is a issue in your health ...persue it...I still have cervical cord problems... get attacks that really scare me...  Hope this helps.

Sincerely, Annliese

[kass]

Need to add before I ask questions that now my arms burn anytime I use them for more than a few minutes and give out on me.
*Is it possible that the prednisone is actually the cause of many of my symptoms at this time? Weakness was NOT present at the level it has been since prednisone was introduced, and at one increase attempted, weakness was dramatically increased within days and took weeks to recover what ground was lost in this respect. Prior to beginning of October there had been no muscle pain and its only progressively gotten more chronic and severe. Prior to a week ago, upper body issues had been minor and had really not been an issue since late September or so and are now seriously impacting functioning.
*Any idea what the muscle pain is? Or why the arthritis is no longer being controlled on such high doses of the pred?
*Any recommendations of something to try and control the pain and inflammation? Doctors only offering narcotics and are saying that there is no anti-inflammatory that will help at this point. I am desperate for some relief but cannot be drugged up.

Muscle pain is a deep pain, and while not severe, is always there and is now keeping me from sleeping at night. It feels like if we could just rub deep enough or I could just stretch the muscle enough there would be some relief, but ultimatly neither one really helps. Its affecting both sides, with one side generally being more severe and causing more problems than the other at any given time, but both sides are always hurting. All pain (both muscle and joint) is symetrical in this respect. Pain meds do nothing more than take the edge off, but most of the time even that is not enough.

I really am very frustrated as I am in much worse shape now than I was prior to my muscle disease diagnosis and the start of Prednisone. Something just not right about that.

Thanks so much for any insight you can give me. I so desperatly just want to begin feeling atleast a little bit better.

Thanks,
Kass

PS...one last question...my daughter(5-mito) was being worked up last year for a possible tethered spinal cord and chiari malformation due to symptoms and physical clues. MRI's were read as normal in this respect, but she remains very symptomatic of both. With the chiari finding in me, would you recommend further investigation into this in her??

[CCF-Neuro-M.D.-JT]

SOrry to hear about your symptoms. Chiari malformations tend to present with severe intractable head and neck pain with slurred speech and incoordination, but not the symptoms you describe.  I dont know of any assoc btw Chiari and mito dz, and be careful about getting a surgeon involved. In many cases (not rare), it's an incidental finding that has no bearing on the current symptoms whatsoever. Nevertheless, some people subject themselves to unnecessary neurosurgery.

Prednisone, or steroids in general are known to cause myopathies in themselves. Don't know if that's what you have. You said the biopsy was "severe"??? If you mean inflammatory, then stronger anti-immune agents may be necessary as you are not improving with the steroids.  Some patients are treated with chemo drugs like those used for cancer. There are several things which this could represent, but perhaps you already have some kind of answer in the biopsy. Or perhaps you need another one to see if things have changed, or for a more definitive diagnosis. For the joint pain you could try Vioxx which is a new generation of antiinflammatory agents like NSAIDs, but this may not help your muscle pain. Unfortunately, it won't be enough to treat you symptomatically. The root of the problem needs to be addressed and treatment should start there. If it's an immune problem, you need stronger anti-immune agents. If it's mito, then you'll need the supplements. Sit down with your docs and discuss your concerns and progression with them.  Good luck