Aug 19 2014

Wow so I do not know where to start. It has been a long time since I have took the time to update this, but I want to get it done. Alot has happened since the last time I have wrote. Lets go back to the first week Aug 2013. That was a very ruff week in regards to the pain. I had met with Jacob the medtronic rep and he had looked at my batter. It appeared that my battery was in a very poor condition and needed replacement. Jacob was trying to coordinate surgery to have a new stim battery put in asap. Well Aug 7th 2013 came and I woke up feeling very weird.  The pain that day was un-real and almost as bad as it has ever been. I spent a few hours on the floor laying on ice packs and taking my meds, but nothing was working. I finally decided to call my Dad and have him come down to take me to the ER. We took the trip over to Kaiser North ER and by that time the stimulation feeling was just about gone ( I knew the battery was almost dead as Jacob had told me that this was going to happen). As always Kaiser North ER staff took great care of me and the ER doctor was fantastic! Long story short I was admitted to the hospital and was also highly medicated. The next day the battery was replaced. Since a change in technology took place this time I got a different battery. This type of battery is a rechargeable battery (I have to recharge it about every 4 days and it takes 4-5 hours) I was told that this battery would handle my settings alot better (which it has) Aug 8, 2013 I was sent home and Nicole and my family took great care of me. Don't let me forget that Nicole was pregnant with our son at the time (Due Sept 2 2013)   Lets say that I was still very sore when Joey was born (Sept 3, 2013) and I was also still on medical leave.  Since Aug 2013 I have had the programming of the stim changes a few times. I want to say its been changed 3 times now since it was put in. Since the last update I was also diagnosed with myofasical pain syndrome, fibromyalgia (Nov 2013)  and a complicated form of sleep apnea.(a few months ago)  To help with the MPS I have got 2 different sets of trigger point injections (Nov 2013) and today (8/19/2014). I went back to work a few months after the stim battery was replaced.  Within the last 20 days I have started using CPAP when I sleep. Right now its a love hate relationship. It does help with how I feel in the morning, but it is not comfy at all!  I am starting to get use to it though. Today I also got to meet a new rep from medtronic (Katie)  She came in today for my apt because Jacob was not able to. Katie was very nice and took the time to listen to what has changed in the stimulation and how the pain patters have shifted. She completely erased all of my programming and started over. The changes she has made has helped  so far. Today the pain has been about 2/10 where for the last 3-4 weeks it has been 7-8/10.  So far I am very happy with the changes Katie has made. For those of you that know how the stims work Katie also opened up the pulse width setting. With this setting I can change the coverage area and shift the stimulation around to different areas if I need to. This will be very helpful on days where the pain is really bad. Overall I was glad to meet with Dr. Youseffi today and get the trigger point injections. We hope this set lasts as long as the ones did in Nov 2013.  I also hope these settings will cont to provide a great amount of relief.  Before I end this I do want to say that being a father is one of the greatest things that has happened! It has been so fun watching Joey grow and playing with him as he develops and changes every day!  I also want to give a big thanks to Nicole for standing by my side every day and night making sure I keep my head up. I also want to thank all of my family and friends for every thing you have done and I will do my best to keep this updated more frequently :) ~ JR  

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

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