I had Decompression on Oct 24th 2011, I have been very happy with my surgeon for the most part. I have had a few "doubts" though: he said I would be back to work in 4 weeks and it took 14 weeks I think and then it was very "light duty" and took 2 months to get to a full work day and Im still not able to do what I was able to do a year ago.
I met with my surgeon about 3 weeks ago for what I presumed was my final post-op appt. When I asked why I had more SX's no than before surgery (my headaches are less intense though thankfully!) he ordered an MRI. It took a while for me to get the MRI with some scheduling issues and then he was out of the office last week.
My surgeon called me this afternoon and said MRI looked great and that there is "No Anatomical Reason" for my symptoms and that they should be treated from a "Headache Syndrome" standpoint. I already see a Pain Mgmt Doc who is a neurologist that has been working with me since Februaury to help get my headaches and other SX's under control.
We know of a nurse that works with another nuero-doc that treats Chiari Patients, We are going to see about getting an appt with him.
The surgery is not a cure it's a treatment. Chiari is a life long condition. You definitly need to find another doctor. I take Zomig for my headaches and it really helps. It knocks me out if I wait till the headaches is full blown. If I can catch it when it's coming on and take a half of one it takes care of headache and doesn't make me sleep for a few hours.
I am actually having the same problem...so now I am back to neurologists who wanna shove meds in my direction. I feel like I am out of options at this point.
Im 5 mos out and have been fighting to stay out of the ER with issues with breathing again, facial numbness, arms tingling, lower legs tingling, and finally broke down and went to the ER when my head threatened to explode. It was the breaking point. We just went back to Stanford after the ER doc had a conversation questioning my NS as to why I could not get any assistance from his staff every time I called. They called me and got me scheduled right away! Your discussions have been so similar to my experience, that I am anxious as to what is in store. The only thing we have thought of that could have been difference is that there was not a shunt placed. And I have had an issue with pressure, to such a degree, that I wouldn't post openly the details of my Decompression surgery, but, it was good timing when it was done. Leaves me to wonder now with all the pressure and pain again, if that is the next step..? I'm no doctor, I just know my journey is not finished when it comes to the intervention portion of it.
He also told me "there is no anatimical reason for you to have any symptoms"
I'm pretty ticked still a day later! I wouldn't be mad if I didn't still have SX's, in fact i have more SX's now than I did before my surgery. Before surgery my main complaint was the horrible headaches- which are some better; but now I have quite a number of the "Classic Chiari" symptoms. But yet my surgeon tells me that Im being told that its not Chiari
Its like telling a diabetic that after his daily insulin shot and being told that he is now cured!!!
Amen to that! I’m glad you have a connection to another NS. Did you decide to make an appt w/them? You’re I’m my thoughts & prayers!
Kenny Who-dat Flaming said:
He also told me “there is no anatimical reason for you to have any symptoms”
I’m pretty ticked still a day later! I wouldn’t be mad if I didn’t still have SX’s, in fact i have more SX’s now than I did before my surgery. Before surgery my main complaint was the horrible headaches- which are some better; but now I have quite a number of the “Classic Chiari” symptoms. But yet my surgeon tells me that Im being told that its not Chiari
Its like telling a diabetic that after his daily insulin shot and being told that he is now cured!!!
Amen to that! I’m glad you have a connection to another NS. Did you decide to make an appt w/them? You’re I’m my thoughts & prayers!
Kenny Who-dat Flaming said:
He also told me “there is no anatimical reason for you to have any symptoms”
I’m pretty ticked still a day later! I wouldn’t be mad if I didn’t still have SX’s, in fact i have more SX’s now than I did before my surgery. Before surgery my main complaint was the horrible headaches- which are some better; but now I have quite a number of the “Classic Chiari” symptoms. But yet my surgeon tells me that Im being told that its not Chiari
Its like telling a diabetic that after his daily insulin shot and being told that he is now cured!!!
Amen to that! I’m glad you have a connection to another NS. Did you decide to make an appt w/them? You’re I’m my thoughts & prayers!
Kenny Who-dat Flaming said:
He also told me “there is no anatimical reason for you to have any symptoms”
I’m pretty ticked still a day later! I wouldn’t be mad if I didn’t still have SX’s, in fact i have more SX’s now than I did before my surgery. Before surgery my main complaint was the horrible headaches- which are some better; but now I have quite a number of the “Classic Chiari” symptoms. But yet my surgeon tells me that Im being told that its not Chiari
Its like telling a diabetic that after his daily insulin shot and being told that he is now cured!!!
Kenny Who-dat Flaming said:
He also told me "there is no anatimical reason for you to have any symptoms"
I'm pretty ticked still a day later! I wouldn't be mad if I didn't still have SX's, in fact i have more SX's now than I did before my surgery. Before surgery my main complaint was the horrible headaches- which are some better; but now I have quite a number of the "Classic Chiari" symptoms. But yet my surgeon tells me that Im being told that its not Chiari
Its like telling a diabetic that after his daily insulin shot and being told that he is now cured!!!
Kenny Who-dat Flaming said:
He also told me "there is no anatimical reason for you to have any symptoms"
I'm pretty ticked still a day later! I wouldn't be mad if I didn't still have SX's, in fact i have more SX's now than I did before my surgery. Before surgery my main complaint was the horrible headaches- which are some better; but now I have quite a number of the "Classic Chiari" symptoms. But yet my surgeon tells me that Im being told that its not Chiari
Its like telling a diabetic that after his daily insulin shot and being told that he is now cured!!!
Im so sorry for the multiple responses from my Iphone..apparently hit the button a few times without realizing it. I just saw that when I transferred onto my laptop for the night.