Thanks, George!
You guys make me smile...and to feel much better when things run amok!
The neurosurgeon's nurse called this morning - I didn't answer the phone because I usually never answer my phone if I don't know who it is.
That aside, she called because she wanted to answer the questions I have. I'm not calling back because in reality, those questions were never meant for her or the doc - they were just random speculative questions that I had and ended up "speaking aloud" in an email to someone who has always engaged in discussion about the stimulator with me. They aren't really questions that I need to know the answer to right now, such as, "What do I do if...." or "This happened, so what do I do now?" kinda thing - they were more along the lines of theory and possibility. I wouldn't ordinarily trouble to call the doctor's office every time I have a question or theory about an illness or surgery I have had. (Wouldn't the neuros love me then??? "She's calling AGAIN!?")
But that aside - over last weekend, I really did send the email to the company rep because I hadn't gotten an adequate response from the resident on call for what I deemed to be a significant problem. When that occurred, I did go to whatever route I felt would get me the answer to something I felt was important and urgent. (If it had been important but not urgent, then I would have waited until Monday and called the office myself!)
So, in response to that, my neurosurgeon has said (in the 2nd email he sent me) that if his resident does not adequately answer a concern that I have, then have the answering service contact him directly, and they will do that. OK - so that's an answer I can appreciate. I didn't know that over the weekend, or I would have done that, instead of emailing the company rep. At the time, I felt like I had explored all options with the office by actually speaking with the resident, so now I was left with figuring out how else to handle it. Now I know better.
Bah...anyway. It's just a little thing - don't know why it got me so worked up.
As for the surgery, I really and truly hope that I continue to see the results I have gotten thus far, and even further improvement from here! I am keeping a good record of what is happening so that I can follow trends and such. To say that I am having fewer CH's now, which are able to be aborted by increasing the stimulator the majority of the time is one thing. But to see that occur over an extended period of time, in all seasons and conditions, is entirely another! I am happy with what I have seen so far, but not enough time has gone by yet - so I'll be carefully tracking all of that and will definitely share what I find with everyone here as well as what I am doing to share it with my physicians (both neuro and neurosurgery).
I realize that surgery is a last ditch effort. And even that many people say that to do surgery without having tried the alternatives is insane. Perhaps... I cannot try the alternatives for a couple of different reasons - 1 being legal and for my career, and the other having to do with personal medical issues that I'm not sure wouldn't run some unknown risk. But I still agree that surgery is what you turn to when you are chronic (with CH or with types of migraine/other headaches that cause continuous, daily or near daily severe pain) and have failed all of the conventional treatments (on and off label) and so on. It is not something to be jumped into lightly, by any means.
That being said, this surgery is a LOT different than other surgeries available for CH. The neurosurgeon I see now once told me (when I went for initial consult over 3 years ago) to never let anyone cut anything or do anything to my face that might result in permanent damage with only little chance of success at best. I appreciated that he felt that way. I had never considered those surgeries for CH an option for me because they just didn't give the results I would have liked to have seen occur.
THIS surgery, on the other hand, is different. Nothing gets cut through or destroyed. (Well, yes, the tissue is cut for the purposes of the surgery, but I mean no major nerves are severed, and so on!) The entire device can be removed, even. It does not alter physical appearance in any major way. Many of the other surgeries have the problem that you can only do them to one side, and then if the CH switches to the other side, you're stuck. For this surgery, they can place bilateral occipital electrodes and my surgeon then additionally will place a supraorbital electrode on the side of the pain if he feels that will help/you agree to it. I have had CH's around my left eye twice since I got the surgery, but they weren't as severe as usual, so it wasn't as big a problem that the stim didn't cover that area - I'm not sure that stimulating those occipital nerves isn't what reduced the pain for the left sided hit, even without a left supraorbital stim.
So anyway - even though it doesn't cause permanent damage like some other surgeries, there are always risks. This surgery is much less risky compared to DBS. The biggest risk of this surgery is infection post-op. Supposedly DBS is more effective, but that whole risk of death thing makes it a little more of an obstacle to consider! For some of us, risking death to beat the pain SEEMS worth it when the beast has taken everything away from you. Personally, I wanted to try the less-risky route first to see how that went!
I'm really really hoping that this does pan out to be an option for those who suffer from chronic, medication-resistant intractable CH as well as for those with severe forms of chronic daily headache (New Daily Persistent Headache, in my case). It would be great to have an option to turn to when nothing else works. As I said in my one email back to the neurosurgeon, this is the first time I've felt hope that my life could return to some semblance of normal in over 7 years, and that's a really big deal.
Sorry to ramble on!
Hugz,
Carrie