I am a patient (not a medical professional!) who has been dealing with hemicrania continua since 2009. This causes constant head and facial pain on one side of the head 24/7. I am looking into occipital nerve stimulation as a treatment as I have tried everything else.
Sunday, August 19, 2012
Successful trial
Today I can joyfully say that I have had a very successful trial. I was a little unsure at first because I had procedural pain and that pain was in the same areas as my pain normally is, making it sort of hard to decipher sometimes whether the stimulator was working or not because it was so sore there. When I woke up on Saturday morning though, it was like the difference between night and day. I had no headache and decided to try not taking my pain medication. I was lucky enough to have a thunderstorm come that night also, which is one of my worst triggers. I just changed the program on the stimulator and was good to go. Still no pain meds. I did get an answer to a question that I have been wondering for years now. I wondered if I had the stim could I still get the bright red cheek that comes with the terrible headaches? I did in fact get that bright red cheek but all the while I was chatting and laughing and felt much more like the old me. I did make a stupid mistake though. I got sleepy and went to bed forgetting to take my pain med (Kadian) that I have been on for almost a year now. I woke up this morning sweating with chills and very nauseated. It took me a few minutes to realize I had gone without taking any medication for 36 hours! While I felt really bad for a couple hours this was still exciting that I FORGOT to take any medicine because my head was not hurting. I am sort of emotional today. My oldest daughter and I have not been getting along at all for a few weeks now and she even moved in with her biological father a few days before I went to Tennessee for the trial surgery, and now I am going back to Tennessee to have the stim removed but I don't want to chance infection so I will sadly give it up. I am just not ready for trading in this wonderfully soothing massaging feeling in my head for the regular old pain pill taking, ice pack holding me. Hopefully soon I will be headed to the permanent implant and my daughter will realize I am the best mom in the world (well one can only hope right)!
Wednesday, August 15, 2012
Trial implanted!
I had the leads to my trial stim implanted Monday the 13th and had the battery hooked up and the stim turned on Tuesday afternoon. It has only been a little over 24 hours so it has not magically taken all my pain away. I still have quite a bit of incision pain where the surgeon made incisions and then shoved wires through those and tunneled them under the skin - is that why I am hurting ya think?! I am hoping in a couple of days I will be able to tell more of a difference. The stimulation does feel nice. It feels like a light massaging sensation to me. I would trade that for excruciating pain any day! I will post some pictures but if you are squeamish beware the bandages do have some blood on them. I go back next week to have the trial removed and if it was at least 50% successful in relieving my pain we will plan to do the permanent implant surgery in 2-3 weeks. At least I have a good excuse for lots of trips to Tennessee right?! The people there are super friendly. The entire staff at Cool Springs Surgery Center was awesome, not to mention my wonderful surgeon Dr. Rupert and rep from St. Jude, Rod - who was very patient with me and created several programs according to what I asked him for. I have one lead that I cannot use at the moment under my eye. It hurts to stimulate it and the area is just really sensitive. I am just going to use the other 3 leads for now and wait to see if that area feels better soon so that I can try that lead again.
Saturday, August 11, 2012
It's almost time to go for trial surgery!
My surgery is getting so close and I am SO excited!! They will not turn the stimulator on until the day after it is implanted because they said they will numb my head up so much that I will not be able to tell if it is working or not the first day. Now I am excited about my head being numbed up, yay! I will try to keep the blog updated but my laptop bit the dust so I will have to try to use the computer in the lobby where we are staying. If that doesn't work, I will update it after we get home. We are coming home on day two if I am doing ok so that the hubby can go back to work for a few days. He is trying to save his days off to help out when I have the permanent surgery if the trial is successful, as I will be needing more help with that surgery since it is a more difficult surgery while the trial is just a simple outpatient procedure. Wish me luck!
Subscribe to:
Posts (Atom)