1 year and 5 days post surgery

Good evening :)  First off I can not believe that it has been one year since I had my stimulator surgery.  For the most part I have been doing really well since the re programing and having the stimulation on both the left and right sides have helped alot and the pain in my head and neck has been very minimal to non existent.  Of course I still have the " bad days" but the pain is not nearly as intense as it was before surgery. The biggest battle with occipital neuralgia (ON) is the severity can increase at any time. I will be fine one minute and then next feel like I have been hit by a semi-truck. As some of you may already know on April 11th I was diagnosed with fibromyalgia. Getting this diagnosis was very hard emotionally and was very frustrating. I am glad to have a reason for why I had such a spike in full body pain (over the last few months) I have been on medication since April 12th and I am starting to feel much better. Fibro causes pain all through out the body. It also causes alot of problems with sleep cycles. Most of my pain is at the base of my neck and head ( from ON) and my middle back,legs and feet ( from fibro). Every day I pretty much have pain all through out my body, the severity is just different in certain areas. Since I have been taking the medication it has helped decrease the pain levels and has helped ALOT with sleep. I was also able to discontinue my other sleeping medication (YAY)  The DR told me it would take about a month to see the full results of the medication, but so far so good :) I have been very excited that the medication seems to be working well and have been doing alot of research of fibro. As some have saw May 12th is fibro awareness day, so please pass the word and feel free to ask any questions you may have. To end this I want to say thank you again to my fantastic wife Nicole ( my number 1 supporter) I also want to thank all my family and friends for providing encouragement every day!! I send thanks to each and every one of you :) I will report back (hopefully with good news) in a few weeks and give feedback how the medication is working!
I hope every one is well and please continue to be safe so you don't have to, " see me in my office ;) "
JR

11 1/2 months

Good afternoon its Monday April 8th 2013. As most know I have been having some problems with headaches again. Over the last few weeks I have been getting some pain on the left side. I was trying to tell my self that it was just the weather and things would get better. Well over the last few days things actually got worse. The new pain I have been getting is all localized on the left side. It felt just the same as it did on the right prior to surgery. Friday I finally got tired of dealing w the pain and contacted my medtronic rep. A while ago I got home from the apt. Some major changes were made to my stim device. First off I knew that I had 2 lead wires when surgery was done last year. What I didn't know is that one of those lead wires could be used for neuralgia pain on the left side. I was very excited to learn about this last Friday, but also very nervous if it was going to work or not. I had my apt this afternoon and after a while of " playing with numbers" as my stim rep calls it the "right settings were found". Its a little hard to explain what was done but I will do my best. The changes started with isolating one lead wire to be used for the left side and the other wire set to be used for the right side. Programing changes were made so I can run stimulation sensations to both the left and right side at the same time. I can also now change how much stimulation is going to each side. For example: I  can have the sensation greater on the left than the right (or many other different combinations)  My stim rep feels this set up will work very well and I am already having positive results with it. He did check my battery and I have about a year of life left. I was told not to worry about this that it would be replaced with out any issues. He is also going to keep a close eye on the battery to make sure it doesn't go faster than we think. On a good note this change has already took the discomfort on the left side away and it gives me much more freedom with the system. I am also very excited about my upcoming vacation next week!  As I look back I cant believe that I will be post surgery 1 year (April 25th). I want to thank Nicole for giving so much support and telling me things will get better! I <3 you so much!!  I also want to thank every one for the support as it means so much. I am sorry if I personally do not get back to every one, but I do read all the comments :)   I hope every one is well!

9 1/2 months

Good morning its about 11:30. Its been a while since I have updated this so I thought that I should add to it. In about 2 weeks (Feb 25) it will be 10 months since I had surgery. Things have been pretty good since I had my settings re-done on Jan 3rd 2013. Over the last few days I have been very active and I think I pissed my occipital nerve off ;) Nicole and I took a short trip to San Fransisco. We went to the Disney museum and the SF zoo. I had a lot of fun and <3 spending time with Nicole! :)  
  Like I said the pain until yesterday has been very minimal. Until this am I had not changed the stimulator settings since they were programed on Jan 3rd. This am I changed to the back up settings that were designed for days like today. The setting I changed to provides deeper stimulation and hits a more isolated area.  I seem to be getting a great deal of relief from this programing, but still have the associated problems ( with my eyes,balance, dizziness and nausea) For some reason the pain today has hit me emotionally. I didn't sleep very well last night and when I do get headaches I get very tired and cranky. I all want is the pain to go away, but I know that is not gonna happen! Sorry that  I am in a very cranky mood today!
   I sit here and think that I am very great full for the stim surgery and I cant see how I lived just about every day like this. I also again want to thank Nicole for always being there for me and understanding!  I <3 you a lot and you mean the world to me!!   I also want to thank all my family and friends for the support every day, it means the world to me that every one of you care so much!! With that being said I hope this headache only lasts a short time :)
TTYL
JR

PS: this is not directed towards any one, but I just found it very meaningful!

January 9 2013

Good morning :) This is the first post of the new year. I would like to start off by saying I hope every one had a great Christmas and New Years. For some that were aware I had a headache during that time  for 17 days. After speaking to my medtronic rep I was able to get an apt last week on the 3rd. Lets say that I was at the apt for a LONG time. It started with my rep running behind (but at least he told me) Once he got to the clinic we started talking about what had happened and where my pain was at. For those people that did not know I had a headache the pain was pretty much the whole right side of my head. I was also getting pain in a  area that was not covered by the stimulation. Jacob spent a great amount of time working with the stim settings. The good news is that there is not damage to the system and every thing is working as it should. They were also worried about problems with the wires, but that also checked out ok. After a while of playing with settings Jacob was able to change the frequencies and expand the coverage area. Now I feel stimulation through out the full area of the back of my head. It also raps around the sides to the area near my ears. Jacob was very pleased with the effects and the changes. Like before after the new settings the pain was gone immediately.  Its been almost a week and I am still doing very well and it  took me a bit to get used to the new settings. Not much more to tell about but I do want to take the time to thank my fantastic wife for putting up with my moods over those few weeks I <3 you alot! Also want to thank all my family, friends and extended ems/fire family for the support encouragement  and concern. You guys are truly amazing! I hope everyone has a great week and please be safe! :)

JR