Chiari Online Support Group

New diagnosis, surgery or no?

For the last 4 years or so I’ve been dealing with occipital headaches and neck pain. Within the last year the double vision started along with multiple other symptoms. I had a MRI which showed a herniation but the neuro said it was no big deal and wouldn’t cause my symptoms. I’ve been told they are migraines or occipital neuralgia. I finally saw Dr. Heffez and was told I have a 7.5mm Chiari.

Dr. Heffez has offered surgery but said there was no rush. He stated it was all about how long I can deal with my symptoms. I am starting to have neuro changes including hyper active reflexes and clonus. I get almost daily headaches and neck pain with my neck muscles spasming. I also get daily pain in my legs and feet with foot and toe cramps.

Will surgery help? Have people generally been satisfied with their results? Anyone who has seen Dr. Heffez, did you have good results after?

Thank you for the help. I’m new to this and still learning.

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Dr. Heffez was the one who finally diagnosed me as well. I thought he was great. I have not yet had the surgery either, but he said the same thing to me. Basically however long I can deal with the symptoms… and I’m reaching that point very quickly.

I have read stories of others who were diagnosed by him and had the surgery. Almost all of them had great success.

My best suggestion is, if it’s significantly effecting your life, do the surgery.

Eventually you may need the surgery, and you’ll have to decide that for yourself. I was diagnosed by MRI and 2004 and didn’t need surgery until 2017. I worked with a surgeon for several years before I decided to have the surgery done, getting yearly MRIs to monitor things, and they told me basically the same thing, that I could do the surgery when I was ready. I worked with a conservative neurologist who helped me try to manage the headaches with medication, PT, and occasional injections. For the last 3-4 years before the surgery my symptoms got progressively worse, but I was pretty afraid to have the surgery performed as it is so invasive. Finally, I started to just fall down during headaches. When even my conservative neurologist agreed it was time, I knew surgery was the right thing to do. My recovery was difficult, complicated by a CSF leak, followed by a second surgery. The surgery is not without risks and the recovery is intense. You’ll be out of work for months and need so much support as you recover.
For me, I’m glad I waited and tried about every non-surgical approach I could. That gave me a lot of peace to know that surgery really was the last resort, especially during the difficult times I was able to feel like I’d done the right thing. And now, about six months post-surgery, I’d do it all again for the relief I feel. In retrospect, I was barely living before, and had slowly gotten used to it over time. Now I feel great most days, and I’m hopeful for the future. So follow your heart (and head) and trust yourself to make a decision that is right for you and your family.