My Chiari experience and a BIG Thank you

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!

Hey Diana!!!

It sounds like you found a great NS...I say this b/c he is ordering a full spine MRI and isn't rushing into surgery yet...

He sounds like he knows what hes doing...which I hope is comforting to you....

My B12 was low..I just take tabs for that.....Also..It is great that the NL ordered more blood work..he, at least is working in your best interest (my opinion) to rule out other causes....I had Lyme and it mimics a lot of other illnesses...I was Tx's with mega anti biotics for about 3 mths.....all my joint pain went away after treatment for lyme , for the most past and the extreme swelling in my ankles...

sounds like you have a good team working with you.....Thanks God!!! Oh, one more thing...when do you get the B12 checked again?????

Thanks for the update!!!



Thank you for sharing your story. I didn't know that about B12. I think I will ask my doc to check that also. I am Vit D

deficient, but don't know about the B12. Please let us know how you are feeling over the next couple of days. I am curious to see how fast the B12 shots work for you. Hopefully, quickly! I hope that you were able to enjoy your weekend:)

Love, Carla

Hi Diana!

Sounds like something I went through before I was dxed with my Chiari. I went to the ER with one of my "episodes" and the Dr. there did bloodwork and found that my B12 was in the 30's and should be somwhere around 700-900?? They gave me a shot too and sent me home with Topamax for "Atypical Migrains". I LOVED the b12 shot...felt like Super Woman for a week, but the "episodes" came back and got worse. Had my decompression surgery on 03/17/11 and my head feel so great!! I feel like I am living in another persons head, now if I could get their body too I would feel like a million bucks. I had left sided weakness, numbness, vision and hearing. After surgery I had to go to rehab for 3 weeks and now am doing at home PT and OT. My left side still feels numb, but I am getting stronger every day!! My vision and hearing corrected immediately after surgery and my left side feeling could come back, but it was because I went undxed for so long that the chances of that are slim. I have hope thought and am working hard to get back to "normal". I wish I could get another shot thought, maybe I'll have my PCP check it for me, because after the ER visit it was never mentioned again. I wish you luck and hope all is well with you.

Many Blessing and Prayers for you,


hi diana

im glad you have got an answer, its fantasic that they havent left you, or you left it,

i hope you start feeing better soon, sometimes it takes awhile,

Have you been for spine MRI yet? it would be interesting to see if you have a syrinx.

i hope you are looking after yourself, and have great support.


Thanks for the encouraging words! My spine MRI is scheduled for May 25th. I am feeling a little better in that my mind seems to be back. I am totally exhausted and have severe hip and leg pain. I work full-time and my work as so far been great. I am taking 2 hour lunches so I am able to get a 45 minute nap. This helps me make it through the day.
I go back to my PCP in three weeks to recheck my b12. The NL said I need the shots instead of oral b12 because my body is not absorbing it.
I am ready to get the B12 under control so I can see what symptoms may truly be from the Chiari but I was told it would take several months.
Hope everyone has a peaceful week!


I am glad that you are feeling okay these days. What type of work do you do? That is great that they will let you take 2 hour lunches. Awesome. I hope that you get the B12 under control too. Maybe that will help with your energy level and making it thru the work day:)


Carla, I am an Accounting Manager and have been with the same company for 19 years.



Hope you are feeling well today....WELCOME!!!!!!!!!!!!!



PS: keep us updated!!!


Wow, that is great that you have been with the same company for 19 years! You don't hear that too often anymore:) No wonder they don't mind if you take a two hour lunch! That is really awesome. I'm glad that resting in the middle of the day is working for you. How are you feeling in the evenings after working all day though? I hope that you are able to cope. Please keep me posted on what is happening with you!



There are some good educational videos on the Chiari Syringomelia Foundation's website at You might want to check them out. They are new, unlike a lot of the material which is out there on the web. My neurosurgeon, Dr. Fraser Henderson, is very active in Chiari research in conjunction with the Foundation. Dorothy Poppy who is Executive Director of the Chiari Foundation always attends and participates in the meetings. And, we have some of the leading researchers in chiari lecture aat the meetings. Some of the material is over my head because the lectures are geared to the medical community, but I always learn something from them when I go to the meetings. I understand the purpose of the edcuational seminars is to educate the medical community to recognize and/or check for chiari when a patient presents with a lot of the symptoms and preclude patients going for years undiagnosed. Some of them are just about research too. You might find some of it helpful.




Would you mind going under the resources tab and adding this link so that it is available to everybody? Thanks!


Carla - I would if I knew how!!!!!

I will ask Abby!

Thanks. It says on that page to contact one of the moderators, so maybe that's the only ones who can do it.

Carla Jo Stone said:

I will ask Abby!

Thank you, Abby!

B12 shots work wonders....i know exactly if i surpassed my dosage month date....hoping you are managing somewhat better..the chiari should never be left as a "possible problem" does create some nerve, motor, balance, vision problems..i just had the chiari surgery on may 9 and so far am really happy with my results...

don't give up

Marye, I think the B12 shots have brought my mind back but I am still having symptoms. I also found out that I am Vitamin D deficient also. I just started taking supplements last week. I saw my PCP on Monday and she doesn't think all of my symptoms are from the B12. She did tell me to give myself B12 shots 3 times a week for a couple of weeks instead of the once a week I was doing.

I see another NS tomorrow for a 2nd opinion since I had this appt scheduled before I fell apart in April. I still have the full spine MRI next week. Hopefully, I will know more next week.

Hope you are having a good day!