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!
Well by the time some of you have read this post I’ll have already had my surgery! After a very long wait I got the call yesterday to say that tomorrow is going to be the day. Nothing like getting right to it!!!! What you won’t get from me however is any form of complaint, I’ve been waiting for what seems like forever and now it’s go time. The reality has set in and now the nerves are kicking in. There’s a long road to recovery ahead but this is the start of that next step forward. I’m looking forward to putting the past year behind me and starting to move forward again.
Even though I’ve been through this surgery before I keep going over it in my head. I’m trying to keep my mind off it but that’s kind of hard seeing as this all happens tomorrow morning. At this time tomorrow I’ll be hopefully be getting more pain relief from the CRPS. Even though I have to get through all the surgical pain first! I’m looking forward to putting the long wait of last year behind me and starting to move forward again. I’ve had to go through a lot with these implants but I believe in them and that they work as a way to control pain. If I didn’t then I wouldn’t be going through all of this. When I look at the relief I was getting before the implant shifted in my neck it was all very worthwhile doing. It allowed me to get a quality of life that I was lacking!
What do they do during surgery to put in the implant? The surgery to put in a neurostimulator is done in two parts. The first is done while your awake, as you need to be able to tell them where your feeling the sensations of the stimulator when it’s turned on. So they start out by giving you some heavy duty drugs to make you go to your happy place! They then go in through your back and insert the wire that has the electrical lead that goes into your spine. The area they go in order to stimulate my left hand is in the area of C3 or C4 which is at the base of your neck. Once they get the lead into the perfThe ect spot through a series of tests and you telling them where you feel the sensations they move on to the internalization of the battery. This is the more evasive of the two parts and so it’s also the part where you get to sleep! It excites me because with my CRPS sleep is very broken, and so I know with the use of modern medicine I’ll get a nice sleep I don’t normally get!
The internalization is the part of the surgery that is pretty hard on a person’s body. They tunnel the wire from where it comes out of your spine to wherever you’ve chosen to have the battery placed. In my case the battery sits in my left clavicle so the wire has to get from the middle of my back to there. It’s a long ways to travel and I wouldn’t want to be awake for that. It’s always fun waking up to find ice packs placed in the middle of my back and in the region of my upper left chest to bring down the swelling. Yes! It’s a lot to go through but when thinking about the other options I have, it makes the decisions in deciding to go ahead with the surgery a whole lot easier in deciding.
Tomorrow the long road to recovery begins but so does a new chapter in this book! The hill I’m about to climb is very steep and takes a lot of mental toughness but the rewards will be great. In my case the stimulators work really well to even out a lot of the flare ups that one can get but I also understand that for some that they don’t work. I always tell people that if your considering one of these implants to give it a try because what other options are open to you?
For those of you who are Canadians I wish you all a Happy Thanksgiving! Yes this weekend we were suppose to be going to the lake to enjoy time with the family and an amazing meal. How that all changed with one phone call! Well it’s time to get a little shut eye before the big day tomorrow so I’ll talk to all of you soon.
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.
The past 72hrs has been challenging to say the least! Several trips back to see the surgeon and the staff at the implant clinic haven’t yielded a lot of answers. If you hadn’t read my last post you may not have known that I had my surgery to remove and relocate the second of my two implants. It now sits under my left clavicle and I’m happy with where it is, with any luck it will work out better in this location. During the surgery we ran into some problems and found out that the site had become infected, and we are trying to understand if it might be related to the last infection that I had.
Everything was cleaned out during the surgery and I’ve been put on antibiotics and will undergo further tests next week. We are hopeful that the treatment will work but it’s a watch and wait type thing. The surgeon will run some tests to make sure that nothing has gone to the spinal cord as well. It’s one of those kinks that I didn’t need thrown into the mix but I guess it is what it is! The pain is super intense at the moment and I’m doing my best not to lose my mind. I’m on day four and hopefully in a day or two we’ll see more improvement. Yesterday I couldn’t understand why the pain was getting worse but after talking with the staff at the implant clinic things now make sense. I won’t go into detail but after talking to them about what was done during surgery, I have a better understanding of why all the extra pain.
My intentions were to finish this yesterday but that just didn’t happen. I’m having a really hard time at the moment dealing with all of this. Going into this surgery I thought I was prepared mentally but clearly I had that part wrong. I can deal with the physical pain but at times everything gets to be to much and I just want it all to be over! It’s also taking it’s toll right now on the rest of my family, with having to make lots of adjustments while I get better. Sometimes that can be harder to deal with than having to deal with recovery itself! It isn’t fare that my family has to be affected the way that they are. At times like this I get angry at the CRPS and the changes it’s caused in my families life. This family has stared adversity in the face before however, and like all those other times we will get through this one as well.
If anything all of this drives me more to beat this illness, and in order to do that I need to trust that God is going to help me do it. It’s been a rough week and my emotions are running on high! Have you ever had that dream where you need to take a breath but you just can’t. Over and over in the dream you gasp for air but you just can’t seem to get the breathe until you wake up. Well that’s kind of how I feel this week, I’m having trouble getting my breathe. Once I open my eyes and get that breathe I know everything will be ok. It’s just going to take a bit of grit and determination to get though all of this.
All of the feelings set aside the surgery itself is going to help improve things for me. I already know without a doubt that moving the battery to where it is now was the right decision. I have to admit I didn’t like the thought of where it was going to go. Sometimes I just need to listen and not question! Thanks for listening to my frustrations in today’s post, sometimes just laying it all out there helps.Well enough rambling for today and besides I need to rest up.