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Chiari Malformation Community
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Avatar universal

lots of health issues... new troubling symptoms undiagnosed... help?

Hello all... I hope I can get some input here. I posted in the neurology forum but have yet to get a response and I could really use some advice on this matter. I'll start by listing my diagnosed medical issues first:
I have multiple herniated/bulging discs in cervical, thoracic, and lumbar regions. Degenerative disc in cervical and thoracic area. Straighting and osteoarthritis in my cervical region. Bone spurs pretty much throughout, one is pressing on a nerve in my neck. The herniated disc in my lumbar spine is pressing on my sciatica. Scoliosis, fibromyalgia, and migraines that lasts for weeks on end.
So here is what has happened recently. I changed pain management doctors approximately 3 months ago. My first appointment, they increased the Lyrica from 150 mg to 200 mg a day (I had been on it for a year and a half before the increase). A week later they performed a nerve block on my cervical spine. About a month after all of this I started getting the shakes and an electrical pulse type feeling throughout my body, concentrated from my waist down, neck down to my hands, and with the feeling of nerve pain and weakness. I felt very clumsy walking and started dropping things a lot. Also starting to have pain in the base of my skull. Then about 2 weeks after that I started to have twitching so bad I looked like a bobble head and had trouble walking. It was so bad that I had to leave work (I'm a cook at a nursing home) and go to the ER. They said it was dystonic reaction. To make a long story shorter... After 2 visits to my pain doctor and 2 visits to 2 different types of neurologists and 1 brain MRI later... I was diagnosed with myoclonic jerks and the tonsils of my cerebellum dipping down into my spinal canal (no measurement) which she said was an incidental finding and seemed very unconcerned. By then my "jerks" had finally subsided (they lasted about a week and a half) and she said I could return to work. So I returned this past Wednesday, worked Thursday and a few hours Friday before I was sent home because I started twitching again!!! The neurologist thought it was coming from the increase in Lyrica ( which all my doctors said it wasn't dystonic reaction)... So during the first attack my pain doctor tapered it down to my current dose of 100 mg a day. I really felt better when I returned to work but then Thursday night I felt weak in my hips and lower back, which I passed off as being on my feet for two days after almost 3 weeks off from work. Friday morning I felt even weaker and it had spread to my right arm and hand, and legs. Then the electrical pulsing inside started and not long after the twitching again ( which are concentrated in my trunk and neck and milder this time). I go back to the neurologist tomorrow. Any ideas?
6 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Many times Drs will refer to a Chiari DX as an incidental finding as that Dr is not well informed or experienced with this condition,....

U will need more testing....one being  a CINE MRI to check CSF flow....the length of ur herniation is not as important as if it is creating a blockage of flow...

Chiari symptoms cycle...so they can come and go, and change from time to time....

We can loose upper body strength as well as in our legs as there are related conditions as well to be concerned with.

Testing for these related and non related conditions should be done and ruled out.

Find a true Chiari specialist and educate urself so u will be able to know when u do find the right Dr for u....use the list of Drs in our Health Pages to help u start to research Drs...the list is not meant to be used as a referral nor is it an endorsement for the Drs on the list....it is just a starting place, and was compiled by the members of Drs they have been to, treated by and liked.   http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
Avatar universal
Thank you for responding.... I've read many of the posts and you replies before posting mine. I was actually wondering if the nerve block could have triggered these symptoms?
620923 tn?1452919248
COMMUNITY LEADER

  It is possible if they didn't know about the herniation and hit the tonsils or close to them with the injection it could cause an issue....


I am not sure on that...but I would not have ne more injections until u see a Chiari specialist and they are the ones that give it.
Avatar universal
Thank you... And I definitely plan on telling my pain management doctor.
Avatar universal
So I received my MRI report, the herniation is 3 mm. This was a regular lay down MRI, I have read that a standing MRI is more accurate... Is this true? Also when they check for a sryinx, do they have to do a MRI with contrast or would they see one on a regular MRI? You seem very educated about all of this, that's why I'm asking you. I will be talking to my pain doctor on Monday. I have asked for his help in finding a diagnosis because the myoclonus is really effecting my life. I'm out of work and have a family to support, so I really need to explore different areas to find a reason so that it can be treated properly. Thank you in advance for taking the time to answer my questions.
P.S.
I will talk to him about a cine MRI and I go later Monday for an EEG.  
620923 tn?1452919248
COMMUNITY LEADER

  An upright MRI is helpful for those with a herniation less then 5 mm's to see how gravity affects u....but it should not be necessary...the CINE MRI should be a help to see if u have an obstruction....another issue is finding a place that knows how to do a CINE MRI is difficult and it is even more difficult to locate a place that has the machine to do an upright MRI....so, I would not push for one....just make sure those reviewing ur results are well experienced.

To locate a syrinx they would look in the cervical spine, thoracic and lumbar....the only time I had a contrast was for my brain MRI....
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