Well, I thought I would give up update because I think my experience of the past four days is an important factor for people to consider--for those who are having the surgery, those in the early stages of recovery, and those considering the surgery. I've also decided today that I am going to stay on this site for years to come regardless of whether or not my pain goes away. I have been so encouraged and blessed by the recent thread of success stories. I really think I am going to recover and when I do, I want to be here for others who are facing the same nightmare I did. I am a pastor and have walked through painful situations with so many different people, but until you are the one sitting in the hospital bed or facing daily chronic pain, you just really don't have a clue. I have also faced the loss of loved ones--my brother was killed when he was 16 and I have lost many others who were too young to die. This may sound like a stretch, but I now say that facing this kind of pain with the prospect that it may never get better is not the same as losing a loved one, but is almost as difficult. I've experienced both, so I know.
So I had the anterior fusion L5/S1, on Nov. 11. I was supposed to be a "slam-dunk" case--the rest of my back is great, I am young, non-smoker, in great shape, no nerve damage, just constant persistent back pain that was interferring with my lifestyle. I was on too many pain meds--still not able to do the things I wanted to do.
Recovery has been hard for me, but I felt like I was hitting my stride at week 6. I was back doing some things at church (I run a staff at a mega church and lead worship). December 24 is the height of the church year, so that was my target date back, very part-time. I came back and we had an awesome 12/24 service--we did Trans Siberian Orchestra's Carol of the Bells--we were rockin--I was rockin. I was walking A LOT.
About 2 weeks ago, I started to have pain in my left calf. Some of you may already know where this is going. I thought it was part of the recovery process because all of my tighter muscle groups have reacted poorly to the surgery. My hamstrings are extremely tight (comes from sitting at the piano for hours), so they rebelled at week 2. I just figured my calf was now doing the same. I stretched it, kept walking, all of this in the middle of coming back during Christmas.
Well, the pain got worse and worse. It would feel like a sudden charlie horse only worse and last for 10 seconds. Eventually, it felt like the calf was going to explode when I would have these episodes. This was a level 12 pain just for 10 seconds or so that would knock me off my feet. This went on for 10 days. Finally, I called the surgeon. They told me to go to the ER--this was 12/26.
I went in, and we had to endure the usual ER experience--so much hopelessness all around us--especially right after Christmas. People hurling like crazy. At one point, I told my wife, "let's go, I'm not waiting any longer...it's fine." We stayed and they scanned my leg for blood clots. Well, they found them--in the left calf. :jawdrop:
So...the doctor came in and said about 1/2 the doctors now days do not treat blood clots in the calf unless they are above the knee. They just let it run it's course. However, my wife then told the doc about my shortness of breath episodes. There have been several times during my recovery that I have had to "take a knee" or I would have passed out. Was told this was part of the recovery--body is tired from the surgery, etc. However, I have also had shortness of breath issues and slight chest pains for years. So, they did a cat scan of the lungs. A couple of hours later, she came back in the room and told me I had bi-lateral multiple pulmonary embolisms (clots in the lungs that had moved through the heart). :jawdrop:
She said I would be admitted and they would figure out what to do from there. I was admitted into a private room. A good friend of mine is one of the nurse managers at the hospital and when she heard I was in, she changed the room assignment while I was being transported from a shared room to a private room in the brand-spanking-new wing of the hospital. That was a blessing.
My primary care doctor started me on Lovenox shots. You give these to yourself in your stomach twice a day. He also started me on Cumidin. They put me on a heart monitor and kept me there until 12/29. One thing that still makes me wonder is that the nurse who did the initial scan of my calf was called back in to do another scan of my whole leg as I was worried the clot had moved up. She told me she had followed my chart and was "shocked" to see I had PE's. She said my clot was in such a non-consequential area of the calf, that she had rarely, if ever, seen a clot move from that area of the calf (or the calf itself) to the lungs. She didn't have any answers, but I have leared to listen to the "little guys" in health care who are on the front lines running these tests--they tend to know their stuff.
I talked to many doctors and nurses. I asked about contraindications between the blood thinners and the fusion and one doc said, "the fusion will probably be fine...but...so?" His point was the blood thinning was going to come first since we are talking life and death.
Well, my surgeon called and said I was pretty far from my surgery--7 weeks--for the clots to have been caused by the surgery--but, who knows? He said the fusion should be fine with the thinners. He said they have to put people on thinners all the time post-surgery if they develop clots during the actual surgery. For some surgeries, they put you on thinners ahead of time or during the surgery to prevent the clots.
The time in the hospital was VERY painful for my back. The hospital bed was a problem, lack of sleep. Also, on Saturday, I had a very bad bout of depression. I could not get control of myself. We have all gone through so much, but then to have this happen and to feel like it was a major set back was just over the top. I also thought about my four young children and wife--the life that I love so much--and realized I could have been gone--and perhaps I am going to be gone soon due to these clots or who knows what else--what will my family do? On the other hand, I knew that staying on this earth meant continued back pain, pain meds, and now these blood thinners that I am sure are bad for me, and again, what will my family do with me in this lame condition? I was very down, but collected myself by Sunday.
My surgeon and the PA have assured me that this should not interfere with the fusion. I am home now, and giving myself the shots twice a day. I also now have a standing order for blood tests every Wednesday so they can adjust the prescription levels in the Cumidin. They said I will be on this stuff for 6 months and maybe the rest of my life if the tests come back that I have a disorder.
I will tell you this--back in the summer, well before my fusion--I went to the local medical emergency center with pain in the same calf. It was the same kind of pain--although not nearly as severe, but it was enough for me to go in. They looked at it and said it was nothing. They didn't scan it. If they had scanned it they would have found the start of this blood clot--there is no doubt in my mind. Then they could have put me on blood thinners, I would not have had the PE's, and I would have timed the surgery with this in mind. You have to be persistent with health care--these people are wonderful--but they are human.
Many people have asked me since the surgery if I would do it again if I could go back (why do we trouble ourselves with these types of inane questions??) I have said that even with the severe recovery pain, things were looking up, and I was glad the implant was in, and I, with great fear and trepidation, if given the opportunity would still have gone through with the surgery, before this weekend. Well, this past weekend, I began to verbalize that the surgery was the biggest mistake of my life. I was in so much back pain--probably from the stress, not being at home, the beds in the hospital, and no sleep. Now I am home and my back pain is basically back to what it was the days before all this happened--so I am thankful. Perhaps the 3-4 days of being immmobilized was good for the back long term, since I had been doing so much. So, I am back on the road to recovery, ready to start walking again.
So--don't ignore the blood clot issue, pain in your calf, insist on a scan, and perhaps insist on the CT of the lungs even if they say it doesn't happen--it DOES happen--it happened to me.
We can do it.