Yeah Cin!
I am on the road towards this procedure with a really top notch pain specialist--'bout time after 8 years. My personal theory is that our headaches are not "organic"headaches--caused by hormone imbalance or something systemic. Hence the limited results we get with meds like Topamax and Imitrex. They are more "mechanical" or "surgical trauma" headaches cause by disruption of nerves which occurred during surgery due to a number of different factors. I believe that I had a mild case of occipital neuralgia before surgery since I have had neck problems and headaches for years. I have had a number of "crashes" in my lifetime--a whiplash car accident in high school, a skiing wreck in my mid 20's and I got run over by a bunch of novice tourists on a motoring sailboat while I was windsurfing. So my neck was a wreck to begin with and then it was jammed into a vice for 4 hours while they diddled around near my brainstem. Yes, traumatic.
My plan with my new pain doc is to work on my back first and allow the Botox in my head to wear off so he can map out my headache pattern with more accuracy. The Botox works pretty good, but I still get neck and occipital pain. I am planning on nerve ablation or rhizotomy, which from my research seems to be pretty much the same thing.
On Monday I had over 40 shots in my lumbar region--peripheral nerve blocks--OOOOOUUUUCH!! Way more painful than I expected and no sedation. He had to stop a few times to allow me to quit sobbing and calm down and I am pretty tough when it comes to pain. I go back in 3 weeks for another set--he wrote me a Xanax prescription for next time so it shouldn't be so bad. I have had SI joint injections--3 of them, but with limited results so he thinks that the pain is coming from the tendons and ligaments surrounding the sacroiliac joints rather than from the space inside the joint. He has no doubt that this whole syndrome began with my 4 hr laparoscopic hysterectomy--yes I am the Queen of Complications.
After the second round of peripheral nerve blocks, and my pain is reduced, he will go in and ablate these same nerves, which involves going in with a radiofrequency needle and frying the nerves which will interrupt their function of sending pain signals to the brain. My new GP had this done in her lumbar spine and she has never had pain since.
After all this is done my Botox should be worn off which I will be glad of since I look pretty strange--my eyebrows droop, kinda making me look like a Vulcan, but my forehead is smooth as a baby's butt. I would rather have a few wrinkles than this weird expression since I wear my hair over my forehead anyway.
The plan is to do some nerve blocks in my neck, C2-C3, which I haven't done before and then some other blocks along the occipital nerves to see exactly where the irritation is located. I have had 5 occipital nerve blocks before, with fairly good results, but you can only have 6 a year. My new pain doc, Dr Hines, maps out the bony structures with a fluoroscope and metal markers, giving much more pinpoint accuracy than the last pain doc I saw. The last pain doc I saw was the regular anesthesiologist at my local hospital who worked in the hospital's pain clinic, but the new one runs a specialty pain clinic and all he does is pain medicine. Again, if 2 blocks work we go in with either chemoneurolysis or ablation. I'm doing more research on the difference betweeen the two.
So that's where I am in the process of getting my life back! It has just sucked for 8 years either having a terrible headache every time I try to go to have some fun and lately doing nothing but sitting in a recliner watching TV and going to doctors appointments. The biggest thing I have done was go to Philly and Chicago to the ANA symposiums, which were great, but I was in a lot of pain the whole time. Kind of put a damper on a lot of the things I wanted to do.
I'll keep you posted on my progress, and again Cin, let us know how you progress.
Love and No Ache to you all!
Capt Deb
AAAAARRRRR!!!!!!!
