Hi, I was diagnosed with CM type 1 last month. No one has told me but from reading over my MRI it says a 17mm herniation with no syrinx. I have been having short lasting headaches with bending down, coughing, sneezing etc. multiple times a day every day. (I have 3 small children at home so I am bending down a lot) I have neck pain and an achenes in the back of my head and pressure in my ears. I seen a neurosurgeon and he pretty much told me that they couldn’t guarantee my headaches were caused by the CM so we could try to treat with meds or we could try surgery but it was really up to us. (I’m pretty convinced they are CM headaches)
So, I have been to a neurologist and have been on Topamax for a month and it is somewhat helping but I’m still having the headaches. I’m so confused on what to do.
Do I go ahead and have the surgery? I’ve read articles- it’s not garaunteed to work, and there is a good chance it won’t last (right?)
Do I continue trying meds? (Until I absolutely need surgery) Do I search for different doctors?
My family wants me to have the surgery but I think, they think it will cure me and I will be back to normal. ( I know it’s not a cure ). I have a feeling I will never be back to “normal” again.
The headaches you describe sound very much like CM headaches. Surgery is such a hard decision because everyone's experiences are so different. I had a really good outcome and as such I'm very happy I went through with it. No I'm not 100% but I'm able to do so, so much more than before surgery. I work full time, workout regularly, socialize, and so on. If I overdo it I might have some muscle spasms in my neck or a bit of a headache but nothing major.
I would seek a second opinion and try to find a doctor with a lot of experience with Chiari. There are issues that can sometimes go alongside chiari like EDS and POTS. I would try to a find a doctor who would evaluate you for those prior to surgery because it seems those are the people with the least successful outcomes.
Thank you. Did you have any other symptoms other than headaches? Did you go to a Chiari center? I have considered going to a Chiari center but I would have to travel such a long way.
Headaches were actually one of my more minor symptoms. I also struggled with dizziness, lightheadedness, numbness in my hands and feet, extreme fatigue, neck pain, and poor balance. I went to the Mayfield Chiari Center in OH.
I know several members have had good experiences with doctors in TX. Here is the recommendation list our members have put together. At the top of the page we have a tab that says doctors. Click there and then go to Recommended Doctors to see who other members have had good experiences with! :)
Jenn w, I’m sorry you have this diagnosis but glad you found us. I agree with Anglyn- if you are at all able I recommend getting to a Chiari center. You should absolutely know if you have Ehlers Danlos Syndrome/ hypermobility and or dysautonomia/pots. They will make a difference in other things you need to be screened for before you have CM surgery, if that’s what you decide to do.
Other things that tend to come along with Chiari:
Apnea
Low vitamin d
Low magnesium
Tethered cord
EDS/hypermobility- can lead to cranio cervical instability (this has to be fixed!)
Pots
If your situation allows you, take the time to know if these other conditions may be affecting you- it could mean the difference between one surgery or two or three.