Join Date: Apr 2008
Location: Sydney, Australia
| | Circulatory Problems, Cellulitus, Osteomylitis, CSF Leak?
I'm not sure this is on the right board. If it isn't please let me know. It is also very long because it is hard to explain without providing a lot of background information.
I'd like some advice please. The several doctors I have seen have given quite conflicting advice and I'd like a more common sense approach.
I have suffered six serious spinal injuries in my life leaving me with eight damaged vertebrae, three areas on my spinal cord that are damaged, three historic CSF leaks, one current CSF leak, possible hydrocephelus, incomplete paraplegia, transient quadriplegia (C3-C4) four times so far, no bowel control, very limited bladder control, no sexual sensation. I'm 50, have five children and an amazing wife who has stuck by me despite losing our house, our savings, our businesses etc etc.
I have an intrathecal morphine pump and take oral morphine currently at the rate of 200mg per dose, often two hours apart. Without such enormously high doses of morphine I cannot get out of bed or stay in my wheelchair for more than a few minutes. The pain is just too much.
Living in a house totally unsuitable for my condition because of our finances, we have stairs. I get down them by sliding. Sometimes I used crutches. Sometimes I just fall down them. That's the fastest method. In the end of September 2007 I lost all motor function in my left leg to above the hip. This happens about four times a day but mostly it is unimportant because of the crutch, walker and wheelchair. This time I was near the stairs and managed to fall backwards, hitting the wall and opposite the stairs and then my legs went out from under me and I was airborne landing on the stairs part way down and then bouncing around until I hit the bottom. I fractured my right ankle. That was OK because I have no deep feeling in that area. I fractured my right hip. That was not that OK because I have full feeling there. I had a suspected fracture of my left wrist. Not good because I communicate with the outside world by typing and type very fast but am used to using all fingers. I also jarred my back and my neck.
I was hospitalised for a few days. They put a temporary cast on my right ankle but it was decided that a cast that looks like a ski boot would be better. So a junior nurse used her normal ward scissors to cut off the temporary cast going straight down the front of my shin. Now I had had cellulitis for about eight months during most of 2007 and it had healed only about a month before this accident. I was very very worried about it happening again, especially since I was told on admission that the risk was very high of real problems if the cellulitis occurred near one of the fracture sites, especially the ankle. So the junior nurse attackes the cast with scissors that have very sharp ends and that are not designed for cast removal at all. She has some problems. I felt some pressure when she started and a bit of pain but very quickly she was about 150mm below the knee and I have little surface feeling from that point down until you get to mid top of my foot. I was in pain and was not paying attention to what the nurse was doing.
The nurse managed to cut not only the cast but my leg in about twenty places. It was only when she jammed the scissors at a steep ankle into my foot that I felt something and said "Ouch". Peeling back the cast it was clear that I had been cut quite deeply in about four locations and enough to draw blood for about ten or so other cuts.
I immediately asked for the NUM (Nurse Unit Manager - the nurse in charge of the ward) and she came straight away. I had previously told her about my concerns relating to the cellulitis and she was certainly concerned. She called for antiseptic dressings, creams, bandages. All manner of things to firstly sterilise the area and then to dress it. Not that it mattered. Two hours later I had a raging infection on several of the sites.
This is where it gets complicated. The previous lengthy period of cellulitis had been treated by hospitalisation, IV antibiotics, home nursing with IV antiobitics, oral antibiotics etc etc. It hurt and the bones ached around it but other than that it did not cause any real problems.
This time the infection was different. If I stood up, the ulcers would burst and serum, pus or blood would pour down my legs. Sometimes it would spurt out some distance. Within seconds I would suffer severe nausea and most often vomitting. Then about twenty seconds later I would develop a splitting headache, rendering me totally incapacitated.
The ulcers waxed and waned. They would be deep purple some days, bright red other days. There would be one or two ulcers only, especially on my left leg, then there would be eight or ten. The often looked like chunks of flesh had been torn out or even chewed out by something like a rat. Then two days later they just looked like shallow mostly healed ulcers.
The treatment was the same as the previous time. IV antibiotics, lots of oral antibiotics etc. I would ask over and over if there was anything that could be done to reduce the nausea, vomitting and headache symptoms only to be told that everything that could be done was deing done.
Then about two weeks ago an infectious diseases doctor looked at the wounds and said that these were going to be very long term and that it was possible that they would never heal. He still wanted them dressed by nursing staff every two days but other than that he recommended against any further antibiotics suggesting that they were not helping and eventually I would be struck down by a disease that all the antibiotics would mean that it would be a highly resistant strain and deadly. He also said that the nausea, vomitting and headaches were almost certainly not related to the cellulites and osteomylitis. By this time there were depressions in the bones under the ulcers but the bone scans were inconclusive. Since the bone scan machine was many years old, it was amazing it even showed by leg. I found it informative that the conclusion was that there was a section where the infection had reached the bone except that the area being referred to was at the wrong end of the bone scan, had no ulcer anywhere near it and probably due to damage just below my knee some years ago. The ulcers are much lower. That really gave me confidence that the bone scan was being read well.
In 2001 6cc of air was introduced into my morphine pump. Since it has a reservoir of 18cc, that really is a lot of air. This was done by a doctor that was rushing off to give a lecture about how good he was as a pain doctor and was late for his plane. He was aware of the area when it was pointed out to him but instead of emptying the pump and doing it properly, he left the air in place. I was told later that it might have taken him as much as 2 hours to correct the error. He was aware that the error was potentially fatal and not one of those 1% problems but at a percentage that really matters.
A great many things can happen when a pump is filled with air. It can pump the air into the spinal column and you end up with an air embolism, something that would make a really good torture technique except that it would likely kill the person before you could get anything out of them. Better pumps protect against such problems as best as they can and so the air is not pumped until everything else has been emptied. But the trouble is that the pump starts to cavitate. That causes the catheter to contract and move about, often quite violently. That's what happened to me, and the catheter scraped up inside the spine, ripping out nerves, scraping the sheaths of other nerves and generally making a real mess. In addition the catheter whipped about where it exits the spinal column and the seal around the catheter failed, allowing the CSF to leak out. The damage was quite serious and scar tissue formed that made it impossible to use a blood patch to seal up the leak. Eventually the leak improved and I was left with a permanent fairly bad headache but not that much problem with nausea and vomitting on moving from one plane to another.
So now I'm stuck in bed. Recently the ulcers have worsened a great deal and now cover much of my right shin looking like a fresh burn with a half a doven nasty patches that are missing chunks of skin.
If I stand up or attempt to get to the toilet even though it is only a few feet from my bed, the ulcers just burst and blood goes everywhere. Sometimes it is almost clear. Sometimes it is very dark and clotted. Then the nausea, the vomitting and the headaches.
I have been told I need to see a neurosurgeon but being a patient without any private insurance the best I can get as an appointment is August. We will be homeless well before that.
Now I've had CSF leaks in my past. I had a very bad one when the first pump was put in in 1999 and for five weeks I could do nothing but lie very still in bed in a darkened room, not moving my head even from side to side. The symptoms of such a leak are very similar to what I now have, to the best of my memory, with the exception of course of the bleeding.
Since the symptoms started shortly after my shortcut down the stairs it is quite possible that I disturbed the catheter and caused increased leaking.
But the interesting thing is that if I move but the ulcers do not do anything then I certainly do not have any bouts of vomitting and very often even the nausea is minor. The headaches are still as bad however.
I'm trying to figure out which is causing the nausea and the vomitting and the headaches. I note that these symptoms seem to be included a lot of the time with Cellulitis but don't know if that means just at the beginning or as bad as I have them. I wait for three or four hours to see a doctor and then see them for about ten minutes. Many of the questions I ask are pretty much ignored or, as in the last case, the doctor simply said he did not think the symptoms matched the ulcers.
I know that the Cellulitis and the Osteomylitis is notoriously difficult to heal, and that with the diabetes that I may or may not have and the fact that I am extremely allergic to Penicillin, there may be not much hope but any suggestions would be greatly appreciated, or perhaps someone who has had cellulitis but certainly does not have a CSF leak (a pretty rare event that requires the damage of the spinal column sheaths) can tell me whether the nausea, vomitting and headaches go with the Cellulitis.
Thanks to anyone who takes the time to read this and I will appreciate any reply.