Newly diagnosed with 3mm Chiari or "tonsillar ectopia"
Hi everyone. Where to begin?
Three months ago I was having horrid headaches at the back of my head. These were different than my normal chronic migraines, and I was sent for a brain MRI. The headache specialist I was sent to looked at the MRI and said "You have a Chiari Malformation", which I'd never heard of. She called a radiologist, and together they measured it, finding it to be 3mm. I was referred to a Botox Specialist to get injections - my appointment is next week.
That headache specialist never documented me with Chiari, and when I contacted her yesterday she told me I do not have Chiari, as it must be 6mm to be Chiari. I'm upset, devastated, and frustrated. I thought I was finally going to get some help! I have been wrongly diagnosed twice in 15 years with MS, due to symptoms of numbness and electrical feelings in my leg, and my toes burning. My eyesight is bad, though they tell me it is 20/20. I have some weird blanket-like feeling of weakness that radiates over my shoulders and down my arms. I have hyper reflexes. And now they want me to go away and forget it?
I read that if it is measured between 3mm - 5mm, it must be diagnosed by the MRI AND presence of symptoms. I have symptoms I'd like help with. Any advice would be appreciated! Has anyone else been through this?
Unfortunately far too many Drs do not know enuff about Chiari and use old methods to DX....looking at the length of the herniation instead of seeing if it is causing a CSF obstruction,.....Many will say it needs to be 5mm's or longer, the problem with that is Chiari is the malformation of the skull not the herniated cerebral tonsils, they are the result of the malformation.....
Many have been Mis"dx'd with MS as the symptoms are the similar if not the same and many Drs feel Chiari is an incidental finding....and we know that to be incorrect.
What you will want to do is get testing for ALL related conditions which will bring you full circle back to a Chiari specialist....
First a CINE MRI to see if you have a CSF obstruction...then testing to rule out a syrinx (Syringomyelia), tethered cord, disk issues,ICP, POTS, CCI, ehlers-danlos....
Use the list of Chiari specialists on here to help you research Drs....
Also request a copy of your MRI and the report it is possible they measured wrong and that too may help you get in for more testing....
My herniations were 4mm and 6mm....and depending on what angle they can appear shorter so if the radiologist and the Dr that did the measuring are not use to looking for and measuring Chiari they may not have had the right slice to even measure....
Try and relax...research some Drs, get copies of your MRI and report and try and get more testing done ....it will all come together....patience.
I have a very similar situation to yours. A 3-4mm CTE and NL and regular doctor are very ignorant and it's extremely frustrating.
When talking to my NL about the MRI, he explained that I had a reversed curvature of the cervical spine and a bulging disk and started to move on to possible treatments. He wouldn't have even mentioned the CTEs if I hadn't.
He was, however, immediately on board to order a cine MRI and thoracic/lumbar MRIs and gave me referrals (even though they arent' required with my health insurance) to Stanford and UCSF. I feel lucky that he didn't try to blow me off. He admitted it wasn't his area of expertise and that a very specialized NS would need to be consulted. He also "warned" me, "you know the only cure for chiari is brain surgery, right?" It was kind of like, do you really want to open this can of worms? I'm thinking, I do NOT want brain surgery, however I WOULD like to know what is going on and NOT do something in the way of treatment that is contraindicated, such as seeing a chiropractor. (His response was, oh no, that would be fine with gentle adjustments, btw.) IGNORANCE!!!!
Out of curiousity, did you ever get the botox? As we progressed through the appointment, he again mentioned botox, and I was like, "Oh, is that still a possible treatment plan? I didn't know if that would help if the "migraines" that I'm having are due to this chiari thing!" He said absolutely they could still help. I haven't heard of botox helping for chiari, but if I go towards NOT having surgery, I am going to have to manage these horrible symptoms, and migraines and headaches are about 70% of the time.
Please let me know your experience with botox! And also, if you feel up to updating us with what has happened since then, I would love to hear about it! Good luck. I feel your pain!!! :-)
The small amount of information that I have about Botox comes from knowing a migraine sufferer. She is frightened to get further injections (they do not last beyond a few months). From the injections in her temple region, she says she "lost her eyelids" with the Botox effects. She says they do relieve the migraine, but there is the awkward feeling in her eyelids.
I do not know of Botox from my own experience, I just thought you could use the information I had to make comparisons between the reactions of different people.
What I do know is that you are frustrated by all the conflicting information that you got. Selma is right about finding a chiari specialist because others know so little about malformation. Please know that you are cared for by the many people who get to read your post.
Hi, I was diagnosed with a 10mm Chiari with a syrinx January of 2013 and had surgery June of the same year. The surgery did help with a lot of the symptoms I was having. There are still several symptoms that remain but the worst symptom is horrible headaches, I was diagnosed with chronic migraines a few months ago. My neurologist prescribed 25 mg Amitriptyline 2 pills before bed, the side effects, for me, were horrible and it was doing nothing for my migraines. The one bright spot of taking it was it helped me to sleep, I take 2 10 mg before bed. I was given Botox injections in late August of this year, my first go round cause they actually tell you it takes a couple of sessions before you will feel a difference. My experience with the injections has been bad, the headaches are still almost daily and my neck pain has returned with a vengeance. I am getting a second opinion on wether or not my course of treatment is appropriate. I am reserving judgement on wether the Botox will work or not because I have only had the initial 31 injections and my next appointment is not until October. I just can't stand the pain till then.
Thank you, everyone, for your comments! It's so good to be amongst people who understand. Nothing has changed for me since my original post in August; I have another MRI with contrast next week on October 20, and my Botox injections begin on the 15th. My new Botox doctor, a neurologist, is saying the same thing the last headache specialist said - "It's not Chiari unless it measures 6mm or more, and it can't cause your symptoms", but they're wrong. This weakness that radiates over my shoulders and down my arms, the co start neck and shoulder stiffness and pain, and those headaches at the back of my head say otherwise.
Roxy, I feel so badly for you and hope you find some relief soon, too! I will be checking back with an update soon, and wish you all well. Again, thank you so much for your responses!
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