Pictures - Please tell me what you think!

[Cryscodoll]

I am new to this so I don't know who sees what...I posted some new pictures if people can take a look and let me know what you think.  I don't take any of the opinions as a diagnosis...just opinions.  I am getting more miserable by the day with the pain. :(

[Cryscodoll]

I am actually probably not that far....I am in Illinois.  I was thinking about calling my NL office to see if they would give me the results of the EEG over the phone...but I know they like to go over things during a follow up, but he's so booked I can't see him again until April 1st.  That's so long to wait!  I just had an MRI of my C-spine tonight......that I should know in a day or two because my regular doctor ordered that.  He said with the reflexes that sometimes if people are nervous or anxious they can have brisk reflexes as well.....

It's hard because my symptoms also match Fibromyalgia..over the last week or so my knees are now getting really sore on the inside....I have to hold onto something at times to stand up........

So the Wisconsin place doesn't charge you just to evaluate your MRI and see if they feel that you should be seen?

[kricklekrin]

Hyperflexia is very common with Chiari.  I have hyperflexia.  When your doctor says your reflexes are brisk, this is what he may be referring to.  Don't be alarmed by the Chiari Center asking for your insurance card.  Renee is great!  She just does her homework ahead of time in case the doctor thinks you would benefit from seeing him after reviewing your MRI's and the forms you send.  She will let you know exactly down to the penny what your insurance will cover.  No worries.  Dr. Hefezz is the Director of the Wisconsin Chiari Center and he is also very knowledgeable in the are of fibromyalgia.  He has done many studies and found that many people diagnosed with fibro actually have Chiari.  These studies are online.  He has not pushed surgery on me if this is a concern of yours.  He won't do surgery if you don't need it.  Dr. Hefezz did one of the most thourogh exams I've ever had.  He has his own MRI protocol.  If you decide to see him, let them know what test you've had. Don't be afraid to let them know you want to avoid repeats to avoid more medical bills.  Many people who have Chiari also have abnormal EEG's.  I found a study being conducted before and after decompression surgery and Chiari patiants who have abnormal EEG's before surgery come back and have normal EEG's after surgery.  Can I ask how far you are from The Wisconsin Chiari Center?   It's very common for Neurologists to dismiss Chiari symptoms.  This is why seeking an opionion from a specialist is very important.  Remember, they see people with Chiair who come in with the same complaints, therefore a Chiari Specialist will be able to recognize your symptoms and how they are relevant to Chiari moreso than a General Practitioner or other general Neuro.  Good luck and I pray you find a doctor who listens.

[Cryscodoll]

I know...I know my tonsil doesn't protrude down past the foramen magnum (?) but I didn't think it looked normal either.....this is getting frustrating.  If if comes down to Fibromyalgia I may seek a second opinion just to be sure.  I found the Wisconsin place but I got a little nervous because they want your insurance card and you haven't even seen them.  I know my EEG is going to be normal.......but I know you also have to go through the motions and cooperate with the doctor if you want them to help you.  I just need to get this figured out.  If I turn my head to one side too long I feel lightheaded and feel like I am going to pass out and then the entire length of my neck/throat will start to ache/throb.  I have to get this figured out.  It's really hurting my work performance and I definitely do not like that.  It's just my NL was so insistent that it is NOT CM....it was hard to argue..........my nerve tests were fine except for my reflexes were "brisk" and all of my other tests have been coming back normal.......

[kricklekrin]

Did you get a copy of your first MRI and report?  I get a copy of every test (result) and doctors notes and keep a copy on file.  Don't let anyone make you feel bad about asking for your own records.  Be your own advocate!  

I went to my doctor with memory problems, tingling toes/feet, balance problems, trouble using my shoulders/arm, daily headache, swallowing problems, head pressure, ear problems, dizzy/vertigo, and horrible fatigue.   My family doctor ordered an MRI.  I was not told I have Chiari.  I got suspicious and ordered my own report and read it myself.  I was told that my symptoms were not related to the Chiari.  Hmm...

I began having horrible episodes (complex seizures).  I sent my MRI's to the Wisconsin Chiari Center and The Chiari Institute after visiting their websites.  I believe it is very important that you see a Chiari specialist.  They see people who come in with the same symptoms daily.  I see Dr. Hefezz at The Wisconsin Chiari Center.  I plan to get another opinion, but I do like him and trust him.  The only reason I want another opinion is because he does not do CINE MRI's.  

I pray you find the answers you are looking for.  I'm not a Chiari specialist, but your pictures don't appear normal to me, and your symptoms are very familiar.  I wish you well.
Kristel

[Cryscodoll]

Question - My NL said that in my MRI of my brain he could see 6 of my 7 cervical vertabra and they looked fine so he didn't think an MRI of my spine was necessary..BUT when I went into my regular doctor just recently about the neck pain he wanted to do a C-Spine to make sure I don't have a herniated disk or anything going on.  Will the C-Spine possibly show anything any different than what my NL saw in the brain MRI regarding my vertabra?  

[Cryscodoll]

I have my EEG today..MRI (C-spine) tomorrow....my reg doc checked my vitamin D level and that was ok too.  It's good they are elminating things but frustrating too....my upper back is starting to hurt now too.....my fingers have been getting achey and sore....I've been waking up to my thighs aching and my knees sore and stiff.....I hate to have a blanket diagnosis of Fibromyalgia but it sounds like it's what it's going to come down to...