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! 

Update 8/6/2012

Good afternoon,
   It is about 6pm on Monday Aug 6 2012. A few things have happened since I last updated this. Last wed the first of Aug I got a sudden of a very severe headache. I was at work when it happened and had to come home. It was also the first very severe headache I have had since surgery. It was very disappointing and frustrating at the same time. I was happy because I was able to control the headache with the medications I have here at home. Since the first things have been up and down and I have constantly been adjusting my settings. It seams as if when I find a setting that overrides the pain after a while the back of my head and neck become very uncomfortable. Then when I turn my stimulator down I have to deal with the pain. I just cant seem to find a right setting. Before last wed I had not changed the stimulator settings at all for a few weeks.  I talked to my rep Jacob the other day and he feels he may have a solution to the problem. What he thinks is going on is that my brain has got used to the " frequencies" being used. Jacob said this is very common to happen and they can adjust the programing. It is also being considered of putting in programing that has a constant changing frequencies. I called this am to the Kaiser clinic that provides support to the patients with neuro stimulators  and they were able to give me an apt for tomorrow am. I was very excited to hear that they were able to make these adjustments so fast. I am hoping for the best, but I do know it will not be a permanent fix for the problem. I do keep reminding my self of the statement given to me by my neurosurgern during my pre-op apt, " Your condition is complex and advanced, this procedure will not erase the headaches completely but it will help control the severity of them."  I have been very thankful that they were able to place the stimulator and that the surgery and every thing has cost me only 20 dollars out of pocket. Also because of researching the devices I was aware that a type of incident like this could happen.   Over the last week my pain levels have also been up and down. Also dealing with pressure behind my right eye and problems with the brightness (which are both common with this condition). I have also been very sore in the neck and back area following the direction of the wire placement (I have been told this will get better over time) Not too much else to update on, but I will be updating tomorrow after my apt to give every one an update. I hope ever one is doing great and I want to thank every one for their continued support!
:) JR

3 months post op

Good morning :) its 1:14am. I am sitting here awake and just noticed and thought its been 3 months since I had surgery. Overall things have been going well. Over the last few days I have had a head ache but its been a lot less severe than before I had the stimulator placed. I  increased the stim settings a few days ago to overpower the pain that started with the stupid clouds and rain. Its working well but some discomfort is still present. Also with the stimulation up higher it makes the back area of my head very sensitive and some what aggravating. I do know it could be a lot worse with out the device and I am so thankful that I was able to have it placed.    I have also been getting a lot of cramping in my mid back area, but from what I have been told that is normal. My lower back seems to be doing really well and their is very little pain or swelling around the battery area. All 3 of the incisions have healed very well and the small one on the back of my head is very hard to find unless I point it out. I have been using alot less pain medication which is a good thing. Another problem I have had is trouble sleeping. It doesn't help because as most of you know I work nights at work so its harder to stay on a reg sleep schedule. Also right now with the stimulator settings up higher its hard to find a decent position to rest. The last time I spoke with my Medtronic rep I was told I wouldn't have to see any one until the 6 month date (which is really good in my eyes :) )  To end this I hope every one is doing well and a big thank you for every one checking on me and being so supportive :) it really means alot!!