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!
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!
Over the last couple of weeks things have been crazy busy! Doctors appointments and kids sports and just life in general has left little time for my wife and I just to spend time alone. So this week I planned a date night and took my beautiful wife out for dinner and even managed to get rid of the kids for a night! Only one thing stood in the way of the great plans we had. She came down with a cold during the day! We had a great dinner but by the time we got home she wasn’t feeling so hot and just needed to get some sleep. I can hardly wait for Hawaii when we get many days and hours alone together!
The last week or two have been a challenge for me to get through from a pain standpoint as well as mentally. I went to visit the staff at the implant clinic for some reprogramming of my stimulators, to see if we could fix the problems with the coverage in my upper implant for my hand. At this point things aren’t looking so great and it’s looking like I might have to go in for another surgery to place a new lead. No decision has been made at this point but I have a feeling I already know what direction this is heading. Like always though I hold my head up and keep moving forward. Why do things always have to go sideways all the time? Don’t know and don’t care! I’m a firm believer that I’m going through all of this for a reason, and that at the end of all of this everything will finally make sense.
As has been the case so often while writing my post it’s been a few days in the making to put this all together. Over the last few days there’s been a lot going through my mind and it’s taken away from writing my blog. As I mentioned before I’ve been working with the implant clinic here in my city to try and fix the problems with my upper implant. The bad news is that it looks like surgery is once again in the mix! We’ve done as much as we can to try and change the coverage of the stimulator with programming and now it looks as if a new wire and lead have to be placed in my spine.
You’d think with all the problems that I’ve had with this upper implant that I’d just give up on it and say enough already, but I don’t give up when I face a fight. Even though it’s effectiveness hasn’t been 100% I still believe that it’s helping and giving me relief. So I’ll go through whatever I have to in order to keep moving forward. So as I wait to meet with my new surgeon and get put on the surgery wait list I’ll busy myself with distraction in various ways. As a matter of fact if it wasn’t busy enough with life in general I’m working on a few photography projects for clients just to add to the craziness!
So I guess I’d better hurry up and post this so that it doesn’t get put off any longer. Over the next few weeks I’ll be making a few changes to this site to give it a bit of a freshen up. It’s been a while since I did that so I’ll be doing that and adding a few other things. So I’d talk to you all soon.
Things are looking up because it looks like spring has finally arrived! The snow is finally melting and it looks like I can finally stop wearing my winter jacket. I shouldn’t say that though because who knows what our weather will do these days. They are after all forecasting snow again on Monday! Hopefully it won’t stick around. It’s good just to be able to get outside for a change. It won’t be long before all the yard work begins and judging by what lays beneath all that snow it looks like there’s a lot of work to do. That will all have to be put on hold though until I heal from my surgery.
This weekend the kids have gone to be with their aunt for the weekend, a much needed break for my wife and I. Last night was date night even though I’m not doing very much. I wanted to go out for dinner but seeing as I’m still having trouble sitting for very long we ordered dinner in and had a quite dinner and evening together. It’s great just getting time together with no kids to worry about, as I’m still spending a fare amount of time laying down and taking things easy.
The pain is still pretty intense at times in my shoulder and clavicle area. The areas they opened in my back are feeling a bit better ever day, and so slowly things are on the mend. It’s been a really long two weeks and the recovery process has been a lot harder than I’d like but the surgeon is saying that everything is looking good. The plan for now is just to monitor things to make sure we caught the infection, as well as do a few other tests. Next week I’ll also go in to the implant clinic, and we’ll try and fine tune the implant for my upper limb. We will also do an x-ray to see if the lead in the upper implant has shifted at all.
When I woke from the surgery and the unit was turned on I started feeling the stimulation down my right arm instead of my left. Immediately I started thinking here we go again! In case you didn’t know this happened once before. My mind started thinking about having more surgery to reposition the lead but everything has worked out, and they were able to program it so that the sensations are being felt where I need them the most. We still however want to check and see if anything has moved. At the same time they will spend some more time adjusting the unit so that it gives me the most effective pain relief possible. There is a lot of going back and forth between the hospital and home at the moment. Sometimes I just don’t know what to think when you pass hospital staff and they know you by name!
Even though this surgery has been one of the harder ones, I’m happy with the overall results. I didn’t think that putting the battery in my clavicle was going to be comfortable but once the surgical pain is gone I’m sure it will be fine. With next to no fat in that area, I was sure the battery would really stick out and be uncomfortable. I was all prepared to have a large lump sticking out because of the battery but my surgeon did an excellent job and you hardly notice it at all. Not that it really matters because all that’s really important is that it helps with a persons pain relief.
The timing of all of this wasn’t great because there is so much going on around here. Hopefully this week the construction company will start work on our basement, and there is the usual spring cleaning that needs to take place around the house. At the moment though lots of rest is what the doctor wants to allow my body to heal. For those of us dealing with CRPS, healing after a surgery is always takes so much longer. So not pushing myself right now is what’s in order.
Hi everyone! Today’s post will be short and to the point, well the most part with a few spelling mistakes mixed in. Why do you as because last night I had my surgery and I have some really strong drugs coursing through my veins right now! The surgery went as well as can be expected. They removed my battery that I have in my back and put the new one around my left clavicle. What I wasn’t expecting was the fluid that he found in and around the battery sack. So my surgery was a little longer than expected and my surgeon has sent off samples for culture. He wants to see me in his office in two days to talk about the results.
I’m hoping and praying that this doesn’t mean more surgery. However that does remain a possibility and this point in time. The pain at the moment is pretty intense as I have two incisions in my back and the one in my front. I’m trying to make my brain understand that it’s surgical pain so that the CRPS doesn’t flare up to much. I’ll update with more of the details later but over the next few days I’ll be busy recovering. Well for now I have to draw things to an end before I fall asleep!