The Permanent Implant

Sorry that it's been so long since I've posted. Figured I would finally update you all on how my surgery went. On July 19th, I went to Jefferson University Hospital in Philly to have my permanent nerve stimulator implanted. The surgery went well, although I was pretty sore for about a week afterwards. I have about 5 small scars on my head, back shoulder and chest where they ran the wires and installed the battery. Overall I'd say that the stimulator is helping, although I am still getting about 2-3 headaches a week that I'm unable to get relief for. This is definitely better than having a headache 7 days a week, but it's also a little frustrating since the trial stimulator did so well. I'm hoping that after the next follow up visit, I can get some new "programs" that will maybe help eliminate or at least control the headaches that do make it through.

Update: Philly

So this past Wednesday, I went back to the Jefferson Headache Center in Philadelphia. It felt good to go back, since they deal specifically with headaches.

After talking to the doctors, and going over everything that's gone on since my last visit, they told me that they pretty much have two options left.

The first option is Botox injections. This option has been brought up before by many of my doctors, both here in PA and in Virginia, but because insurance didn't cover the medicine, I was unable to try the botox. I think the last time they checked, it was about $1500 a shot. Now however, the FDA has finally approved botox for chronic migraine treatment. So JHC is now in the process of seeing how much (if any) of the cost my insurance will cover. They feel that it shouldn't be a problem, since I meet all of the criteria, and other patients there with the same insurance are getting their's covered.

The next, and pretty much final option, if all else fails is what they call an occipital nerve stimulator. I think I've talked about this in the past, but they would surgically install a lead along my occipital nerve, and it would be connected by wires to a little box that would hang on my side. When I started getting a headache, I would push a button and it would send a little electric shock to my occipital nerve and stop the headache. The procedure is approved in Europe, but not covered here as of yet. They are however having great success with it in patients that have had it done. It's a very expensive procedure of course, which is why I haven't had it done, nor will be able to have it done anytime soon, unless insurances decide to start paying for it.

So anyways, that's about it.... right now I'm just waiting to hear back about how much my insurance will cover on the Botox. My next appointment, which will be when I get the injections is December 19th. Until then I'm pretty much just hanging in there, doing what I can to deal with the pain.

Going back to Philly

For those that still check in on here for updates, I thought I'd fill ya in. As you may or may not remember, I stopped going to the Jefferson Headache Center sometime last year. Lack of finances to make the trip from VA to Philly, and also changes in insurance kept me from keeping up with my doctors there. I tried several other doctors in VA, from pain management to neurologists with not much luck at all.

Now since we're living in PA, and Stephanie has much better insurance through Hershey Medical Center, I'm going to be able to go back to JHC in Philadelphia. The doctor I was seeing is no longer there, but they were able to get me in to see another doctor this coming Wednesday, Oct. 19th. I was worried that I'd have to start all over from the beginning since it had been a while since I'd been there, but they said it wouldn't be a problem. I'm hoping now that Botox has been FDA approved for headache treatment, and they probably have some newer techniques as well, that we can finally get these things under control.

It's frustrating to not be able to plan things, cancel plans you've already made, miss small groups, and miss out on my family because of being in pain. I never know when or how long the headache is gonna hit. So tough.... here's to praying for relief!

Back To Philly

Sorry for the lack of posting lately.... we moved back to Radford and so I haven't had my computer up and running or an internet connection for a while. Tomorrow I head back to PA to spend the night at my in-laws, and then off to catch the train to Philly for another admission to the hospital on Wednesday. This time they're keeping me in the main hospital and doing a ketamine infusion instead of the lidocaine infusion that they've done on the last two admissions. This will be a totally different experience, and hopefully the outcome will be better than the last two where I only had 2 days of relief from my headaches. Ketamine is a pretty serious, scary drug.... I won't get into what all it is, you can look that up online if you wish, but it's an anesthethic that's used for humans and animals.... so yeah, I'm gonna be out of it I'd say... no posts from the hospital bed.... talk to y'all when I get back.