Chiari Malformation 5mm

[Karen5653]

Good morning - I was diagnosed with Chiari Malformation 5mm in November, 2007 (NO SM) after suffering with severe headaches and neck pain- I went through the usual frustrating neurosurgeon visits and have seen several neurologist who were not any help.  In November of 2008 I went to see Dr. Jon Oro in Denver, Colorado.  He verified that I had the Chiari Malformation but told me he did not think that it was causing my headaches (my Cine MRI was normal).  He diagnosed me with Occipital Neuralgia, put me on Lyrica and sent me on my way.  Well, I really liked Dr. Oro and was relieved that my Cine MRI was normal, but, I do not have Occipital Neuralgia.  I put on 13 pounds taking Lyrica and have not yet taken the weight off.  

Anyway, my question is - If you have Chiari Malformation and your CINE MRI is normal - Can you still have Chiari headaches, dizziness and neck pain? I feel like I am back in the same place where I started, headaches, neck pain and dizziness but do not have anywhere to turn.

Thanks to anyone who can reply.
Karen

[Dawn1214]

Hi Karen,

I was told that the chiari should be checked yearly, some neuros think if it is a non issue then you don't need any more follow up for it but I have read enough to know that it can get bigger and I always insist on and mri and cine study 1 time a year.

I just had surgery on my spinal cord and my neck and shoulders are so very tight. I also have had a headache for 3 days and am assuming that is why. Will your insurance cover physical therapy? Before my surgery I was having pt 2 days a week. My therapist was doing neck stretches which helped a lot to loosen up the muscles. Let them know you have a chiari so they know to stay away from that area. My insurace didn't cover it but they only charged me $30.00 a visit and they will also put the tens unit on and hot towels to loosen you up. I might be worth a try. If it helps your headaches it is a much easier fix than surgery would be.

Travel and Simons are two dr.s that talk about pain, trigger points and reffered pain. How one muscle can cause pain in a completly different part of the body. I purchased a trigger point book and it has taught me a lot about different pain and where to massage. A lot of the massages you can do to yourself to releive some of the pain. I would highly suggest you look it up online or purchase one of the books.

I feel Dr. Oro knows his stuff. My neuro told me my symptoms weren't being caused by my chiari but he also told me that the tumor I had in my spinal cord was no big deal and it ended up that the tumor started causing my paralysis so I had to have it removed. Needless to say I didn't trust his word on the chiari and I have gotten 4 other dr.s to look at it and each have told me the same thing. I feel you can trust his judgement and try other things to help with your headaches. I have also had a bit of an issue with anxiety (gee go figure with all my issues LOL) but i refuse to take meds for it and I know that stresess me out and causes physical symptoms as well. If you need to talk, vent or want to try to reason through your symptoms please feel free to private message me and I will be happy to chat with you.
Best Wishes
Dawn

[Karen5653]

Thank you so much for your post.  Yes - Dr. Oro was great and I would recommend him to anyone.  I think what should be said is "Yes, you have a chiari malformation and as a result you have occipital neuralgia". He confirmed the malformation and said because I do not have a CSF flow issue it is Occipital Neuralgia.  

Do you think the occipital neuralgia can be a result of chiari? I know I never had a problem in the past until I fell over a year ago and every since then I have been sick with headaches and dizziness.  

Your post was great and helpful.  Do you know if a specialist exists for Occipital Neuralgia? I can't keep going to Denver to see Dr. Oro (I live in the south east corner of New Mexico).  

Thanks for your help.  God Bless.
Karen

[Karen5653]

Dawn,

Thanks so much for your post.  Yes - Dr. Oro was great.  I wish I would have declined the Lyrica, adding an extra 13 pounds has not been fun.  

It is very interesting what you said about the muscles in the neck - I have been trying to get a massage when I can afford it and my neck muscels are a mess.  I have quit taking the Lyrica since it was not working on my headaches.  

I guess it just bothered me that a doctor can not just say "yes you have a chiari malformation and as a result you have ........" instead they discount the chiari malformation and diagnose you with something else as if the chiari has nothing to do with it.  I believe that all of my headaches come from this malformation - I rarely had headaches before I fell outside one day and I have been having bad headaches and dizziness every since then.  I don't want to have surgery, but I wish doctors would not be so quick to dismiss the chiari malformation.

How often would you suggest MRI's to monitor the malformation? Dr. Oro did not say anything about follow-up other than medication (Lyrica) and occipital neuralgia follow-up with my doctor.

Some days are great, and then some days I have a headache for 3 days straight that I can't get rid of.  It has changed my life and I wish it would just go away :).  

Anyway, things are great today and I am thankful for your post.  I hope you have a great day.

God Bless.
Karen

[Shane99]

Yes, you can still have problems with a 5mm Chiari and no syrinx. Dr Oro is one of the leading Doctors on Chiari, so I'd follow his diagnosis. Occipital Neuralgia can cause many of the same symptoms - including Chronic Pain. Unfortunately, there's not a lot that can be done for Occipital Neuralgia. Mostly they just try to control the pain. However, there is a mini-decompression surgery that may help.

Lyrica takes a while to get into your system where it can do its job. Be careful if you decide to stop taking it. Don't just quit. You'll go through withdrawal. Only quit under a Doctors guidance

If it doesn't seem to be helping, check about a stronger dosage. If it still doesn't work, check about a different kind of Neurological Pain Blocker.

[Dawn1214]

Hi Karen

Sorry to hear you are still having problems.

I understand that Dr. Oro is one of the best Chiari experts, I have never seen him but I have read that people seek him out.

I have a Chiari and have been told that mine should not be causing me problems too. I get occasional headaches but not what I would call the Chiari headaches unless I strain to move something really heavy. I have done much research on my symptoms and Ocipital Neuralgia keeps popping up. I was planning on talking with my neuro on my next visit about the possiblity of that. I understand that there are shots that can be given to help with it. My dr. tried to put me on Lyrica as well and I declined. I hate taking meds, the side effects are just as bad as the problems sometimes. Has the Lyrica helped you at all?

I have also done much research on muscles in the neck as well as anxiety. I think I may be having a problem with these as well. The muscles in my neck are so very tight and that would cause issues with vision, headaches, ear fullness and many other things. I have done massage therapy which has helped quite a bit. I also noticed that TMJ will cause the same symptoms and I know with having anxiety I clench my teeth alot and now my jaw clicks. Do you notice any of these things going on with you? If your csf flow is good and you do not have a syrinx then I know dr.'s are reluctant to do surgery. What other tests have you had done?

I would love to find out exactly what is wrong with me too. If the lyrica is not helping you at all and all it is doing is making you gain weight then I would suggest talking with your doctor and getting off it. There is no sense taking it if it is not helping.

Dawn