After going through many, many medical tests and doctors thinking I possibly had Wilson's Disease, Cervical Dystonia, and other things and my symptoms getting worse and not better, I decided to request my medical records and the MRI of my brain and cervical spine said it was a normal MRI except for maxillary sinus cysts, but the detailed report said mild Cerebellar tonsillar ptosis, doesn't meet the strictest criteria for chiari 1 malformation.
I started looking up information and the symptoms of Chiari 1 malformation match what I have going on. I called my mom to talk to her and she relayed this information to my sister who has similar symptoms and I just found out she was previous diagnosed with chiari 1 malformation (very mild) and she didn't think too much of it because she was in so much pain with migraine headaches, all she wanted was some relief, which her doctor helped her with, she still has other symptoms and when we spoke on the telephone about this we both have many questions now. I am almost 50 years old, what do they do for this? surgery? my neuro doctor does not perform surgery for this, he treats the symptoms. Does this run in families? any information that someone has would be appreciated. It has been very frustrating to say the least, they thought I had Lupus, arthritis, Lymes disease, Wilson's disease. My sister also has morphia is that a form of scleroderma and would this have any relation to chiari?
I have tremors in my hands (worse on the right), head tremors, weakness in the legs, mostly right leg, no reflex in my right knee, back pain, neck pain, my body torques after I stand up from a sitting position, I have loss of bladder control at times, last night I felt like I had bugs crawling all over my body (nerve twitches or something), restless leg, sleep apnea, swallowing difficulties, hoarseness of voice, reactive airway, numbness/tingling, loss of balance, dizziness, gait problems, etc. I am now walking with a cane and it seems in the last 6 months I am declining quickly.
Yes, this can run in families, how it is all connected is still being studied.
There r far more with Chiari then Drs that know how it affects us and they give it terms and classify it with old info...and not correct info.
Many will not classify it as Chiari unless there is a herniation of 5mm's or longer...but Chiari is not the herniation it is the malformation of the skull, the herniation is a result of the malformation.
The best treatment for Chiari when u have life altering symptoms and a CSF obstruction is surgery, and surgery is not a cure or fix, it just is meant to restore CSF flow and slow progression.
U need to have more testing, I know u had a lot already, all of us get the testing for lupus, lymes, MS and others as the symptoms r similar and have to be ruled out...some have been dx'd with multiple conditions so it is best to know all u r dealing with.
Chiari has many related conditions, both auto immune and connective tissue disorders. Scleroderma is an auto immune condition.
Bowel and bladder issues can be from Chiari or a related condition, tethered cord or Syringomyelia....
U have mentioned Chiari symptoms, now u need to have more testing to check CSF flow, and see what other related conditions u may have. And u will want a true Chiari specialist to help guide u.
We have a list of Drs the members here have been to and liked, the list is here for u to use to research Drs as it is not a referral as not all Drs on it may be true Chiari specialists...visit a few, call around and check to see who u feel has the expereince and who u r comfortable with.
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