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

8 months

Good afternoon! As I get ready for the evening I wanted to take a moment to reflect back that tomorrow will make 8 months since my surgery. On this date 8 months ago many things were going through my mind. I have to say that the surgery has helped greatly! I do have my bad days but they are not as bad as they used to me. Some people at work have heard me refer to " the headache train" that is a term I have been referring to describe when I have a headache. Lets say I have been on the headache train for almost 2 weeks now. The last few weeks have not been nearly as bad as before surgery, but is very frustrating. It has I have came to the conclusion that after the first of the year I am going to ask if my stimulator settings can be changed. It is almost as my brain has got used to the sensation. My settings have been all over the place and I can not seem to find a good number. The cold weather has also been getting to me along w the clouds I am doing my best to stay positive and not get frustrated. As some may be aware I have been on a sleep med the last few weeks. It is also under the antidepressant class so it seems to be helping with my mood and frustration levels :) it is so nice to be able to sleep better and not wake up in a crazy amount of pain. Some may ask, " wasnt the surgery spost to help with the pain?" To answer that yes! It has helped alot w the nerve issue and my neuralgia, but the surgery caused a big change in the spacing inside my neck. The open area between c1 and my skull was filled w the stimulator electrodes and wiring whiz means I lost alot of space for movement of my head. It also causes the back of my neck to be very sore and makes it difficult for moving my head up and down. Another common question lately has been " didn't the surgery make your condition go away?" To answer that no this condition will never go away and it COULD and most likely will get worse... I am very aware and ok with this.

On a final note I want to thank everyone for their cont support and encouragement as all of you have been fantastic. I also want to wish every one a great Christmas and new year. Please have a wonderful time an be safe :) also my heart and prayers go out to the responders and their families from the incident in NY this am. " Rest in Peace my brothers we will handle it from here" My greatest thanks go out to each of you for your dedication to your community! May God bless you, your family, coworkers and the community!

JR

7 months post surgery

Good morning its 11:20 am on Tuesday 11-27. Two days ago was my 7 month mark. Let me say the last few weeks have been hard.  I have been having a lot of pain in my neck and lower back. I have also been having problems sleeping. The only way I can describe it is I lay my head down and it feels like it is going to explode. I am also not able to find a comfortable spot for my head. As many of you know I have also lost a lot of motion in my neck which has been very frustrating. The cold weather has been very frustrating as the right side of my body is very cold and the left side is warm. I have also been getting waves of sharp pain through the right side of my head. I am at a point where I have the stimulator settings high enough where it takes away about 90% of the pain, but the feeling is almost uncomfortable. I have not asked for the stimulator settings to be changed because MOST of the time it has been working really well. One thing that has been thought of is changing the settings where it cycles through different stimulation levels. This will cause the feeling to change every few mins and will  "confuse the brain" (Some people will say I am already confused ;) )Some people have noticed my moods changing and have saw me very frustrated. As some know this is part of the condition and I am sorry if I have made you mad or you felt I was ignoring you!  Sometimes it just helps me to stay to my self and not be bothered. Again a huge thank you to my fantastic wife, my family and my friends. I also continue to send a big thank you to my extended EMS and Fire family. All of you have been so helpful and the positive encouragement really helps! Again a big thank you to every one :) A lot of you are very meaningful in my life and have given me a great deal of support ( It would take for ever to tag every one of you! ) Every thing else is going good for the most part, just getting ready for the holidays and enjoying my few days off :) To end this I would like to wish every one a happy holidays and please have fun and stay safe :)
JR

6 months post surgery

Good afternoon all its about 2pm. I know I am a little late on writing this but I have been busy. Things are going well for the most part, but I still have my bad days. On the 16th of Oct I went in for my 6 month post op apt and to get some medication refilled. My actual 6 months surgery date was Oct 25th.  I was told that every thing with my stim is still working as it should and there is been no movement in the wiring (a very good thing) It is very common to have wire movement specially with the job that I do. Also all 16 electrodes are also  working right and there is no noted problems with the system. I was very excited to hear this news. For the most part my programing changes have been working really well and I have got used to the feeling of the stimulation. A few days ago I took an instructor class which seemed to put alot of strain on my neck. When I got home I could feel the first signs that a headache was coming on. I tried to relax and before I could change any settings on my stimulator I was asleep. When I woke up a few hrs later I had fuzzy vision in my right eye and felt the pain in my face, arm and neck. I then increased the stimulator settings. From what I could recall this is the 2nd or 3rd big headache since I had surgery. Also one thing I have noticed is that when the headaches do come they do not seem as severe and to last as long. I have learned that the key is to turn up the stimulation right at the sign of a headache.
  My neck and back are still pretty sore from the surgery. My neck also still feels very tight with turning and rotation. I have also had a lot of itching and discomfort at the area of the battery. From the research I have done I learned this is caused by the forming of scare tissue and should get better over time. I was asked the other day, " Are you still glad you went through the surgery?" My answer to that questions is YES!. Let me say there were only a few select people that really knew how my life was day to day and got to experience first hand with me  how bad this condition was at it's worse (right before I had surgery) I will have to agree with them that my quality of life has improved 100% I also have to say I get about 90% relief from the stimulation. I would recommended the surgery to any one that meets the qualification for it. I am getting better every day but still do get frustrated with the discomfort and the other problems this condition causes, (nausea/light sensitivity/mood changes  and balance problems) I want to continue to thank my fantastic wife Nicole for her support- If it was not for you encouraging me and comforting  me through the worse pain of my life I <3  you a lot! I also want to thank my family and all my friends for the daily support I get. Also to my EMS and fire family THANK YOU! and all of you guys and girls are truly FAMILY in my book. If it wasn't for all your support positive comments and encouragement I would most likely still not be on the ambulance. Well not much more to note for now but I hope every one is doing well. I also  wish every one a Happy Halloween, Please be safe and have fun as I will be at work :) * Also for some that have been asking me the small ribbon on my profile pic came from a stimulator site that I am a member of. The purple means chronic pain, the red means chronic headaches (occipital neuralgia), and the black at the top is support for the frustration and such this condition creates. The picture also shows 3 of the many important things in my life (My love, my dog and the ocean)

5 months post op

Good morning today marks the 5 month post op date for my surgery. I want to first start by saying that I am glad I had the surgery. As some know the surgery has caused a lot of pain and discomfort. I have lost a lot of motion in my neck and at times bending can be difficult. Since I had the stimulator implanted I have only had a few really bad headaches, but the intensity of them were not as bad.  Also with the adjustments that were done last month every thing seems to be working a lot better. I am still trying to find a happy medium with the settings but the over all relief and coverage area are much better. I have still got frequent shooting pains across the back of my head and eyes but that is to be expected. Going into this I knew that it would not be a complete fix to the problem. Another thing to note is that the area around the battery pack has been very sore ( I have been told this is normal due to all the muscle tissue that was cut and the placement of the battery) I am getting used to the feeling of the stimulation and its amazing how I can easily adjust the power of it. One complaint I do have is that I can frequently feel the stimulation changing with my position ie sitting to standing. My medtronic rep told me that is very normal, but can not be corrected with my type of battery. It has been said that when my battery needs to be replaced ( 6+ years from now) that I will be able to get one with that option. I am also very impressed how the 3 different sites have healed over the last 5 months. The one on the back of my neck is very hard to notice. Of course I was told that I had a neurosurgeon stitch them up ;) To end this I want to thank the support of my fantastic wife Nicole ( I love you a lot and your support means the world to me!) I also want to thank all my family and friends for their continued support every day and for asking me how I am doing. I also want to continue to thank my EMS and fire family for all the support and encouragement it really means a lot that all of you have stood by me during this! :) To all I hope you have a fantastic day! 

8/14/2012

Good morning!! Its about 9:50 and it has been one week since my stimulator settings have been changed. Things have been going really well. I am trying not to get too excited but I have to say that it has been great this last week. I have only had to change the settings one time. Since the change I have also found that I have more movement in my neck and the back of my head is not as sore. I was also told that when the stimulator was placed that the space between my skull and c-1 (first cervical disk in my neck) was extended by about an inch and 1/2. Jacob said that this may be a reason why I have felt problems with range of motion. I have even noticed that when I am working I can leave the settings alone. The feeling and area covered is much better than before. I want to thank Jacob once again for making these changes happen. I also want to thank Nicole and all my family for being so supportive and helpful! Also a special thank you to all my EMS and SFD family! You guys have been so helpful and have really been a second family to me THANK YOU!! I also appreciate you guys checking on me every shift and asking if any thing can be done to help :) To end this I just want to say that I really hope this keeps working as good as it is and I am so glad the surgery was performed. 

8/7/2012

Good morning its about 1045. I just got home from my apt. Things went very well and a few changes were made with the programing. Jacob is truly amazing!! He was very patient and concerned that I was feeling the stim settings were not working very well. He then looked at the programing and started making adjustments. I have noticed a huge difference in the changes he has made. He also adjusted my secondary settings so I have something else to use in case I get a bad headache and my primary setting is not helping with the pain. It is really amazing they have such technology to make changes like this. Jacob also told me that the system is fully intact, meaning that all 16 leads and the wiring  are working as it should. It is very common to have problems with the devices, so I am very lucky that every thing so far is working. I have noticed a huge change in the pain levels since the change in the programing. Prior to the changes my pain was about a 5/6 out of 10 and now it is 1/2 to a 1. I am not too sure what happened to cause the increase in discomfort since wed but I am so glad it has been fixed. Jacob was also able to correct the issue I had with my head burning since last wed. I have to update Jacob in 7 days how the changes are working, but so far so good :) Bellow are some pics of how the surgical sites are healing. Again I want to thank everyone for their continue 

support every day!