Unsure of Self and diagnosis

I have many of the symptoms of Chiari I. For the past two years, I have had severe numbness in my arms and legs. The headaches feel as if someone is punching me in the back of the head, then the pain radiates to my eyes. In 2010, I had an MRI done due to seizures and heaviness in right arm. Not long after leaving hospital, I was rushed back because my legs buckled from underneath me and I lost all feeling. I sat in the hospital for 4 days before having an MRI of my cervical spine. It was then I was told I had herniated discs beginning at C4. The did an Anterior Disc Fusion and it seemed like all went downhill from there.

It wasn't until my most recent stay in the hospital that my boyfriend remember that the MRI in 2010 stated I had Chiari I. I keep a notebook of all my records because I have been to doctor to doctor after doctor and needed to keep things in order.Once arriving home, I looked through my files and sure enough there was the MRI report stating this. I immediately called my PCP to see him the next day and when I went to his office, I arrived with information pertaining to Chiari I. I asked why this was never looked at and to my surprise he never received these reports from my neurologist.

He sent me for another MRI and sure enough there it was again. I scheduled an appt with my Neurosurgeon and was shocked at his demeanor. After waiting for a hour to be seen, I was only in the room with me for 5 minutes. He says yes, you do have Chiari I but it is within the normal range. He goes on to say he is not completely sure my symptoms are related to Chiari I; but, if I want to have the surgery he will do it.

I know this is a no win situation. The surgery is high risk or I can remain in pain (that doctors won't help with). I am a mother of a 15 year old and 11 year old and don't have the support I need. I already had to leave my profession because I can't sit for long periods of time, but now I can't take care of home like I used to. There are days when I am fine and there are days when I can't function at all. If there is hope that this surgery will make functional again then I think it will be worth it; but how long will it take for me to recover and become functional again. I am truly unsure of what I should do and scared of having surgery and nothing is corrected.

Hi...

Sorry that you had that awful appt....Personally, I would look for another NS..also, did you ever have a CINE MRI..this test shows if there is a blockage of the Cerebral Spinal Fluid (CSF)...it will show too, if the flow is diminished, not completed blocked....which is also a problem.

Sounds like that NS is "OLD SCHOOL" many use the 5mm RULE..if the herniation is under 5mm ...all is well , in their eyes..even if the patient has symptoms......Research has been done and the jury came in.....SIZE DOES NOT MATTER>

Keep us posted on whats happening with you, ok???

Hang in there,

Lori

Wow. This almost sounds like my appointment this past Monday I had at the Barrows Institute. Except this Doctor I saw had a little more compassion but basically in the end said the same thing. I hope for the both of us we get answers and keep searching which is a pain. I decided to give my Doctor a 2nd chance. If my 2nd experience does not seem right. I will have to figure out a way to meet with a NS at a Chiari Center.