I thought i would share with you all my chiari experience so far. I was diagnosed on April 12, 2011. I did know a little bit about Chiari because my daughter’s sitter and good friend has been dealing with it since '03. Since the beginning of the year I have been battling vertigo, I was diagnosed with BPPV in '07. I finally went back ENT In March to get some relief. He treated it with an Epley maneuver and prescribed a low dose of Valium to take twice a day.
The day after this maneuver, I was 100 times worse. I woke you with an extreme headache, awful vertigo, fell down and was vomiting. I was one step from calling 911 thinking I might be having a stroke.
Over the next week, I was not getting any better. I woke up one morning with severe hip pain, very heavy legs, had to really concentrate to move, my face and hands were numb. I was also having vision problems and difficulty driving. I knew something was just not right. I then made an appointment with my PCP. She was very concerned and since I had battled with what she called atypical migraines ordered a MRI with/without contrast on both my brain and lower back.
The MRI showed 7mm chiari so I was referred to a Neurosurgeon. The soonest I could get an appt was May 20th. This was almost devastating because my symptoms were getting worse daily. I did a little research and found a NS that took all the chiari case in his practice so I tried to get an appt with him. He was 120 miles from where I live but after reading the experiences many people have had with NSs I decided I wanted one who saw chiari cases. They were able to see me on April 28th.
The problem was my symptoms were still getting worse. I stopped driving on April 20th. By Good Friday, I could not function. I was having symptoms of a stroke so my husband took me to the ER. The ER dr dismissed everything I was telling him. I had taken my MRI cd with me since I had it to take to the NS. The ER doctor did look at it with the NS on call and preceded to tell me my neck didn’t look that bad and just make sure I keep my NS appt. He did send me home with a prescription for Tylenol and instructions on what to do for tension headaches. I was so upset.
I missed all Easter celebrations because I could not function. Monday, April 25, I went back to see my PCP because I wanted her to see bad I had gotten since the 12th. I was shuffling around like a 90 year old, was having trouble just thinking and was completely exhausted. She said she had never seen chiari cause these types of symptoms so she ran blood tests for B12 deficiency and thyroid and made me an appt with a NL.
The blood test came back that I have B12 deficiency so I got my first B12 shot on the 26. The NL confirmed the B12 deficiency but didn’t want to overlook anything so he ran many blood tests to rule out things like Lyme disease, Lupus and other diseases that can cause all the neurological symptoms I am having. He also didn’t think the chiari was causing the symptoms. He referred to my chiari as my red herring. I did ask his opinion on whether I should still see the NS. He encouraged me to go ahead kept the appt so the chiari could be evaluated by a NS.
The appt with the NS went very well. I do have weakness on my left side that he thinks is from the chiari. He just wants to monitor the weakness for now and if it get worse then surgery would be an option. He does want to MRI my whole spine to make sure I don’t have a syrinx. He did explained that he would never do surgery to just alleviate the headache pain from chiari because he couldn’t guarantee the surgery would help the headaches. He also agreed that the B12 deficiency was causing the majority of my symptoms.
Before all this, I had never heard of the B12 deficiency let alone know it can cause someone to go from high functioning to not being able to get out of bed or think. Hopefully, I will not have any permanent nerve damage but only time will tell. I still physically feel the same because it will take a couple of weeks for the B12 shots to kick in and several months to get my strength back. Emotionally, I feel tremendously better knowing I should be getting better and have a game plan about my chiari.
I want to thank all of you that have contributed information on this forum because it helped me to be much better prepared for my appts. Also, if you have not had your B12 levels checked you may want to because from what I have researched it can make symptoms of other diseases seem worse. It can also mimic other diseases.
Hope you all are having a pain free day!