Well a week has passed and my recovery continues to be very slow moving. This week I saw my neurosurgeon, and the news was pretty much what I was expecting to hear! The Dr. told me that the surgery was very extensive and that it was just going to take time to heal. Six months to be exact! The good news is that the symptoms that I’m having to put up with are all ones that are to be expected with the type of surgery that I had to have done. I learned that in order to get the wire into place the surgeon had to do a laminectomy on two of my vertabrae at the base of my neck. If your like me and are totally lost by the name then let me explain in plain english for you. A laminectomy is where they remove a portion or all of the lamina from your vertabrae. If your still lost then take a look at the diagram below and you’ll get a clear understanding of what they had to do.
After walking out of the surgeons office everything was really clear as to why the pain in my back continues to be so bad. On a positive note over the last couple of days the dizzy spells have been good in that I haven’t had many. Small improvements are good! All that matters at the moment is that I’m headed in the right direction. There are still a few questions that I wish the surgeon had answered more definitevely but he wasn’t very forthcoming with the answers. There really isn’t much more to say other than that the implant is working. As the surgery heals I should notice a difference in how the implant helps with the CRPS pain.
So if you don’t already know what I’m talking about then your about to get a crash course in how the neurostimulator works. About two years ago I started the process to have both of my stimulators put into place. One of the stimulators helps with controlling the pain in my affected leg and the other in my hand and forearm. Now let me start by saying the route of the neurostimulator isn’t for every CRPS patient in trying to control pain. The other well known treatment for CRPS at the moment is ketamine injections which I will get into another time. So its important to speak with your doctor about which treatment is best for you. Without getting into great detail its pretty easy to sum up what the neurostimulator does. It’s job is to block out the pain signal from your affected limb or area of chronic pain.
The stimulator sends out an electrical impulse that reaches the brain faster than the pain signal from the affected area of chronic pain, so in other words it replaces the pain with a tingling sensation. The payoff with this type of treatment is a possible reduction in pain, and the ability to reduce the amount of medication that one has to take. On days where my chronic pain is really bad I have the ability to raise the level of stimulation, in order to better my chances at reducing pain. It isn’t a cure but its pain management that can possibly give you a better quality of life.
For me the stimulator took me from walking with a cane about three years ago to walking without. That was in my lower left leg proof that it can work! My upper implant hasn’t worked quite as well, but I’m hopeful now that its fixed that I’ll get good results. Yes it’s a difficult procedure to go through but when it works the results can be good and the reduction in pain can be longterm. In other words its worth putting your body through all the torture.
What great about the neurostimulator is that they do a ten day trial and leave the battery outside your body to see just how much pain relief you get. After the trial period you review the results to see if its worth internalizing the battery. I chose to go the route of the neurostimulator because I thought it would give me the best results over a long period of time. When I was first considering what course of treatment to take the neurostimulator was a better choice for me because I wasn’t sure about the Ketamine Injections. Ketamine Injections are a drug based treatment over a 5 – 10 day stay in hospital. While there seems to be short term pain relief over the time that your having the treatments it seems as though the long term results aren’t as good. The jury seems to be out on this however because I’ve spoken with quite a few people who have said the infusions work really well. In my opinion it really comes down to what’s right for each person in their particular case. There are risks on either side of what you choose and that is certainly something you need to look at when picking out what’s right for your treatment plan.
What choice are you going to make? Are you going to be happy with your decision? These are the questions you need to ask the surgeon!
Have you ever been so discouraged that you just wanted to give up? Well that’s how I’m feeling at the moment. I’m now into week five of recovery and I’m not very far ahead. Last night we had a wedding to go to and I was going to get there if it killed me. Call me stubborn, hardheaded, or just plain mulish but I wanted to get out for a bit. Well kill me it almost did! We had planned out how this was going to all play out, and I was going to skip the ceremony because I have problems sitting for very long periods of time. The best thing we figured would be to go to the reception that way if I needed to leave I could. I made it for about an hour and a half before the pain got so intense that I couldn’t take it and had to head for home.
I’m frustrated at the moment because the doctors are saying that my body is just going through a rough healing process and that I just need more time. How much time exactly is that? I will be meeting with the surgeon this week to discuss things along with a few concerns I have. It feels like I’m not getting anywhere very fast and there are days where I just have to have a good cry. Yes you guessed it your getting one of those posts today! Never in my life did I think that I’d be pushed and challenged as much as I’m being at the moment. When your body is screaming with pain your brain is telling you one thing but God was right there telling me another. Over and over I’ve said I’m going to beat my CRPS and that will happen one day. I might be down today but tomorrow is a new day and the fight will resume.
Days like yesterday are hard because things with CRPS can spin out of control so fast. Adding surgery into the mix makes things a lot more volatile, and you never know what the outcome is going to be! So last night was one of those nights where the surgical pain combined with my CRPS caused my CRPS to spiral out of control. Its a fight that I’ve been going through since having the surgery, and one I know I can and will win. My winning spirit just wasn’t there last night however and I had to fight to stop the tears from flowing during the reception dinner. Times like these are difficult to battle through and all kinds of thoughts enter your head. My wife asked me tonight if I regret having the surgery and without hesitation I said “no”. Why? If I say “no” then I’m giving up on something that can be life changing, and take me in a very positive direction.
Am I feeling sad and frustrated at the moment? You better believe it! My emotions got the best of me as we drove home and I couldn’t hold it together. So I had a minor meltdown in the car and at home later. CRPS is a battle where every second of every day is consumed by pain. Sometimes it has to come out and show itself and if that means crying then get out the box of kleenex! I am thankful that I have a wife who understands me and knows how I’m feeling most of the time. I felt as though I’d spoiled the nights fun for the family. My wife then reasured me that in no way had I spoiled anything, which was just what I needed to hear.
For some reason over the last couple of years it seems as though I’ve faced more obsticles, and come up against more challenges than I have in a while. As I walk through each of these challeges, I always walk away feeling like I need to be more of an advocate for CRPS and chronic pain. Something is pushing me to go outside my comfort zone and I need to pursue it. So one way in which I’ll be doing that will be in making a few changes to my site. I mentioned this a while back and seeing as I can’t do a whole lot at the moment I have the time to make the changes. I’ll be introducing a few new links and blogs to my site and from time to time putting up a guest post. I’ve often talked about making these changes but never really got around to making them. Even though most of the content on this site will stay the same, there will be tweaks here and there to speak more towards CRPS and chronic pain! That’s it for today I just don’t have enough gas in the tank and I need to rest so talk to you all soon.
Last week was a pretty rough week with everything happening in our country and trying to recover from my surgery. As a country we try to move on together although that has been forever changed with the events of last week. Today though I want to give you an update on how I’m doing after the implant surgery and where I’m at with all of that. To say that things have been easy during this recovery would be a bold faced lie! I’ve had moments as I slowly get better where I ask myself how much more I have to put up with. This has by far been the hardest surgery to get over and I feel beaten up inside and out.
Its been about a week and a half since coming home from the hospital, and I still spend a fare amount of time flat on my back trying to get comfortable. Am I getting better? The answer is “yes” but I had expected things to be a bit quicker, and to be up and around a bit more than I am. The pain is the biggest problem but my energy level is down as well. I’m still dealing with a few symptoms that are affecting my right side. The fingers in my right hand are still numb and weak and my lips ( upper & lower ) on the right side are still numb. I’m being told that this is because of how extensive the surgery was, and that the nerves are all out of wack. The surgeon is saying this should normalize over time. We are watching this however just in case something else is going on. I’m really at the stage right now where I’m letting my body do the talking and not pushing things to hard. I knew that this part of things was going to be hard but never this hard.
As is always the case this has been difficult on the entire family. My wife has been more than amazing holding this entire family together! As with every surgery that I’ve been through she amazes me with how she does it all! She is a true gift from God! We started this journey together and we will finish it together no matter what gets thrown our way. My kids have had it tough as well through all this. No child should have to watch a parent suffer with an illness of any sort. This has been hard and upsetting to them but they see dad making improvements and that brings a smile to their face. My illness has affected their lives in a huge way and that makes me sad. Childhood has been a little different for them and I wish I could change that. After coming to see me at the hospital one day my youngest daughter was awake at 4am worried about “her daddy” and when I was going to come home. She should be asleep cozy in her bed having dreams about being a princess not worrying about my illness! These are the reasons I’m so passionate about helping others so they don’t have to go through what I’ve gone through.
After being through all of this however the implant is up an running and I’m happy to say working well. It’s going to be a bit before I can say how effective it will be because of all the surgical trauma that has my CRPS and nerves so flared up. As I’ve said before however I’m a strong advocate for the neurostimulators and the quality of life they can give you. I wouldn’t have gone through everything I’ve been through unless I didn’t believe in what they can do. No they don’t work in every case, and in some cases a person’s body rejects the implant. In most cases however they work well and when that’s the case they improve quality of life.
So for the next several weeks I will continue to make small steps to a full recovery. It’s going to take time and lots of patience but I know I can do it. Some days are bound to be harder than others but I trust that God’s going to pull me through this one as well!
Somehow I didn’t think that I was going to be writing a Thanksgiving message from my hospital bed but here I am. Surgery didn’t go at all the way I was expecting and so it’s been almost a week in hospital now. I want to go home! I’m feeling beaten up and in need of my own bed at this point in time. When that’s going to happen I really don’t know, the doctors are due to re-evaluate me today to see if I can manage the rest of recovery from home. I was only up a few times yesterday and I think they’d like to see me up a bit more often managing things a bit better on my own.
My surgery to replace the neuro stimulator took over 6 1/2 hrs in surgery when the process should have only taken about 1 1/2 hrs. They ran into a lot of problems trying to get the lead to go where it needed to go. They had a lot of surprises along the way and found a lot of adhesions that they had to cut through. Ultimately they had to remove two pieces of bone in the T1 & T2 area to try and get the lead in place but yet another surprise showed itself, a ring of scar tissue around the bone they partially removed. After all that however the success story was that they got two of the contacts in the lead into a place where they should never move giving perfect coverage to the limb needed.
Now comes the long hard mountain that needs to be climbed. If your considering an implant of a neuro stimulator you need to understand that there’s going to be a lot of pain when it comes to the recovery side of things. When the surgeon goes in to place the lead in your back, all of those nerves start getting upset and then your CRPS has a grand old time doing its thing, making your body scream with pain. There’s no way around it! If you have CRPS and you’re having a procedure done, there’s going to be extra pain and a whole lot of it! You can get through it though! While I’ve been here at the hospital I’ve been doing a lot of praying to get through this stage.
While I’ve been here at the hospital it’s been a real lesson in frustration trying to get the nurses and people providing my health care to understand the nature of the beast I’m dealing with. Over and over I’ve had to explain my condition and that the standard pain scale can’t be applied to a person with my condition. I thought that by being moved to a neuro ward that my chances may be better at getting the treatment plan that I needed for my pain but it’s become so evident that more education needs to take place. There seems to be a real disconnect understanding that CRPS patients already take high levels of pain killers. As a result this always effects how you as a CRPS patient are treated when it comes to getting anything extra for your pain relief.
As the day has progressed it’s become more and more evident that today won’t be the day I’m going home. It’s just been one of those days where emotionally I’m all over the place because I want to be home with my family!