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cellilitus, pain post surgery, and other leg problems post fusion

I have had 4 fusions, and the one I had 5 years ago has me in a tizzy. after the surgery, my right leg has given me nothing but problems for the past 5 years. first i have a condition that the lymph glands cause a red rash, no pain but butt ugly. i have pain going down the leg especially at night, the leg swells about 5 inches more, yes i measured it next to my left leg and within the last 6 months i have had cellilitus, staph infection twice where i ended up in the hospital and recently in emergency. i was given iv antibiotics both times and the first , in the hospital for 3 days with continual iv drugs. the last time, wednesday, he just kept me in an er room and gave me one iv antibiotic and a cat scan for clot and an x-ray. they wanted to do an mri for bone infection but after i waited for 8 hours with no tv i checked myself out. i feel like cutting the leg off and i am tired of dealing with the cellilitus infections. i was at work and the rash literally doubled in size in one hour. it is now from my foot to my knee. anyone have leg problems, especially cellilitus after fusion surgeries. i also have sexual issues, no angle to my dangle after it. so those who are thinking about fusions, it is a crap shoot. they monitor your nerves but obviously they can't watch them all. now if it does not clear up, there is talk of amputation of my right let. if they find a bone or tissue infection, they will have to cut it out or off. so think hard if you are going to have a fusion. also after my last fusion, last year, my left leg is now numb from the hip to the knee. they said it would get better but it has been over a year and it has not.
I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.


  • Terror, I am so sorry for what you are going through. I have helped treat patients with cellulitis but until my husband developed it I didnt deal with the emotional or mental part. My husband had open heart surgery in Feb. 2011 and they removed a vein from his left leg. When they harvested the vein they tried to be careful bet did do some damage to nerves, veins and tissue. His first episode of cellulitis was about 3 months after surgery. Was in hospital for several days on ivs. He has had numerous nerve blocks for pain and takes gabapentin and pain meds. He has had 2 more episodes of cellulitis. Last one was in May of this yr.where er gave him iv antibiotics sent him home with antibiotics and he has worn compression stocking on that leg since surgery. That is how the cellulitis starts. His leg will swell and fluid sits in the tissue and gets infected. He alsobhas the continuous redness and never wears shorts outside of house anymore. It will be completely normal color and will start in toes and you can watch it climb until it stops about mid calf. Never goes above knee. Thankfully it has never reached severe stage like yours.

    I see what he goes through and the pain and embarassment he feels. Have they ever considered sending you to wound therapy. I have seen it perform miracles with wounds caused from cellulitis. I know you have lived with severe pain for yrs. And I hope they can get this under control. I will be thinking about you.

  • thanks the only therapy they gave me is for massage for the lymph glands. i need long term iv antibiotic therapy for about a week.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • dbarbeau48ddbarbeau48 Posts: 318
    edited 11/17/2013 - 4:48 AM
    Have you been treated with Vancomycin for your cellulitis? From what I have read, its becoming the drug of choice for treating it. Also, I would think you would need a much longer regime, maybe a month to six weeks. This could be done at home after having a pic line put in. I was on it for two months at home for my spinal infection.
    Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007.
  • that is what i was trying to tell the doctor in the er, i needed to be admitted and given long term iv antibiotics over few days not one hour. i am taking clindomycin for an antibiotic also. like i said, they want to do an mri to see if there is a deep seated infection in my bone or tissue.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • They usually dont start wound therapy until they have tried the antibiotics but keep going back to Er and please, please get that MRI done asap. If it has invaded the bone ....well you know how bad that can be. I would keep going back until you get the help you need. Agood friend who had lymph nodes removed after breast cancer also developed cellulitis in her right arm. This was more than 20 yrs ago but she is doing better after the first 6-7 yrs. Her arm is swollen at all times but between wound therapy and compression pump stocking she has managed to keep cellulitis at bay.

  • thanks and my dr referred me to mri on friday. i will call asap tomorrow at work.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I had 4 bouts with cellulitis last year, each progressively worse. The last time I had a 106.7 fever, my wife could not get me dressed to take me to the hospital, so she called my son to help and even with the two of them were not able to help because my fever was so high that I was delerious. Finally they called the ambulance to take me in.
    The doctor said that cellulitis, if left untreated can be deadly and I was near that point. Ended up in hospital for 9 days on IV.

    Each and every time they did an mri and a dopler to make sure there were no blood clots. I'm glad they are finally to do a MRI on you and I agree that if you continue with problems I would ask for a pic line so you could do antibiotics at home. You need a long term dose of antibiotics to finally get rid of it. Between the hospital and home, I was on antibiotics for about 4 months!

    Please take care of yourself, this is very dangerous.

  • terror8396tterror8396 Posts: 1,831
    edited 11/18/2013 - 4:02 AM
    thanks gary
    i will set up appt with mri this week. if there is an underlying infection i guess they will have to cut it out. I am lucky, no fever to speak of just large amount of swelling and lots of red with the leg radiating a lot of heat. it swelled about 5 inches more than it was. my co worker measured my leg. i will let all know asap when i get the mri and results. i still think the underlying cause is with my fusion in the right side. all of this happened immediately after my third fusion about 6-7 years ago.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • the problems stemming from surgery, my first cellulitis attack was shortly after a fusion surgery. After tests they were able to figure out that there were 2 different infections in my leg, one was a staff and the other I don't remeber, but the combination is what caused the dangerous fevers and need for long term antibiotics. My leg also swelled about 5 inches with each attack.

    My wife said that the heat coming from my leg could have fried the proverbial egg.

    At any rate, keep on them and force the issue, this is nothing to fool around with.
  • thanks aaron
    good news is that the mri was negative. there were no infections in the bone of the lower leg so no surgery is needed. i just have to keep taking the antibiotics and when pain and infection subside, i wear support socks to help the swelling which should help the attacks of cellilitus
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I am finishing a month of being on antibiotics for cellulitis and an antibiotic resistant staph infection. I've had it for 5 months and it kicked my butt. Once an episode was staring to get better, it would start all over again. I would go from a normal temp to over 103 in like a half hour, it was awful. I can certainly feel your pain. I am praying it's over now that I haven't had an outbreak in 3 weeks. I never knew it could be that painful and of all places mine was in my breasts. I had a breast reduction and the breast surgeon said that because of that I have a higher likelihood of either cellulitis or a staph infection. I hope this is over!
  • Pepperpot1808PPepperpot1808 Posts: 20
    edited 11/20/2013 - 8:04 PM
    Hi All, I'm new to this forum and I'm not sure whether I should post this or send a private message to Terror8396. Will someone please be so kind as to tell me whether or not I'm being rude?

    Okay, that said, Terror, you have had cellulitis for FIVE years??? I've had it since March and it alarmed me terribly. I don't know if what I have now is just edema or cellulitis. So swollen on my ankles I can sculpt faces, and redness from the ankle about half way up to my knee. Small little bumps that don't hurt or itch or do anything. It was more under control until last Monday (Nov. 18) when I finished taking Flagyl (since May).

    Let me backtrack. I'll make this simple. Went into hospital March 18, 2013 for ALIF. Tried XLIF two years ago, didn't work. So went in for L1 to L5, when surgeon was in there, he found S1 was broken, as well as T11. Everything was fused. Some bright resident punctured my spinal cord which wasn't discovered for a couple of days when I developed the most unbearable headache when moving my head. Yay! Another surgery to insert a drain. Piece of the drain broke off, so Another Surgery to fish it out. They couldn't find it, but I developed a horrible infection - 5 different bacteria with a strain of E-Coli heading the list. Infectious Disease specialists came to see me and immediately was put on 3 different IV antibiotics - (vancomycin was one) and two oral ones. This was in May or June, I forget. I only finished with them this week!

    When I came out of the third surgery, my right leg and foot was paralyzed. This was new! We are now in November and I still can't walk without a walker and I don't go outside. I have to figure something out! The pain in my back is just as intense and I take 100 mg. of methadone 3 times a day for it. My right foot feels twisted and I can't put it down flat.

    Terror, I wanted to ask you what happens when you get a bone infection? Is that really what happens or could happen if the cellulitis gets out of control? No one seems to care about mine. They all just say "Someone should take a look at that." Yeah right, but who? And it took FIVE YEARS for yours to go away? Did it just fade away?

    Can you walk? Which lymph glands get enlarged? What does massaging them do? What are we supposed to do about chronic pain? Take meds for the rest of our lives? I don't want to, but I don't want to be in pain.

    You can get Fentanyl in lollipop form? I've only ever heard of it in patches. How long does one lollipop stem the pain?

    I'm sorry for all the questions - I sound like a dumb little kid - but I don't know where to turn next. I see my surgeon on Dec. 3rd and I don't know what to ask him. I see my GP next week, same deal. I don't know when I will next see my Chronic Pain doctor - my prescriptions are still good for another month and I just get the pharmacist to fax in a renewal seeing as I can't walk.

    Now we've got the holidays coming up and all the doctors will disappear. But our pain won't.

    Terror, I am very happy that your MRI had a positive outcome! You have really opened my eyes to this nasty disease. I didn't gain anything. No pain relief, and a host of other problems.

    Take care and I will be watching this space. And ChrissysMom? I hope it's over, too.

  • If I was you I would ask your gp to continue antibiotics for as long as possible, it is hard to get rid of, especially if you have limited mobility. I know you have had many surgeries, as have I, which the doc said was why it was so hard to get rid of for me. At the time I was having all the problems, I was pretty much bedridden..

    Nan, most on here just post on the open boards unless they have a personal matter that you don't want everyone to know, but saying that, I don't think anyone minds pm messages either.
  • by the way the name is jon
    i never said i had cellilitus for five years. i had leg problems for the five years after that particular fusion. my first bout of cellilitus started last year. i have had 2 major episodes during the last year. i have read that it tends to reoccur and one has to be on the look out. my drs wanted to see if there was a particular cause of the celliclitus so they looked at the leg bone and if there was an infection in the muscle. if there was one, they would have to cut it out. the risk of this is having an amputation if it gets out of control. i could have my leg amputated if it did not resolve itself or get gangrene. it can be a very dangerous disease if out of control.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I have seen quite a bit of cellulitis, a lot of my patients had diabetes and they seem to be susceptible. The ER has a good amount of exposure to cellulitis, so I am not sure why you were not admitted, you did say you didn't have a fever and that might be why they thought you could manage it at home. If you have any immunosuppression or if you take any steroids, you might one to see a infection control doctor or an endocrinologist. They do have wound care specialist, usually they are for inpatients with open wounds. Be vigilant about anyone touching, examining you, to be wearing gloves, even the slightest thing can aggravate the skin. It can be very dangerous, but most cases are resolved without dire consequences. Good luck pursuing effective treatment.
  • Pepperpot1808PPepperpot1808 Posts: 20
    edited 11/21/2013 - 7:30 PM
    Wow! You guys are a wealth of information! Some of my doctors have been very casual about the cellulitis, others much more vigilant. I just had a light bulb go on over my head - On Monday (the 18th) I had made an appointment with my GP to fill my regular prescriptions (like Synthroid, etc.) but I couldn't go because we had had a little snowstorm on Sunday and I couldn't walk from my apartment front door to the street to the taxi and I didn't think I had winter boots that would fit my swollen legs and a winter coat that would fit over my swollen gut.... Blech, I hate winter! So I called and explained that I couldn't make it in, and made another appointment for next week. My GP works in a hospital, which is good.

    At the time of my appointment, one of my GP's residents phoned me and wanted to know if he could fax prescriptions in to the pharmacy and have them delivered. He then asked me if there was anything else he could do, and I mentioned how swollen and red my legs were and was there a topical crème or something that I could put on my legs to stop the itching, cool down the legs and maybe make them less painful (I don't want much). His voice immediately sharpened. He started asking me questions about the current condition of my legs and wanted to know if I had any ugly infections like I developed on my calf (sp?) last spring. No, no, no, I reassured him. Just little pimples or blisters that won't burst and keep multiplying. He said he would call me back and within ten minutes he was on the phone with me again, telling me that they would want to see me before prescribing anything new, and when I could get out, to call and they would slip me in.

    Now I thought this was just great. This doctor and all his residents are an excellent team and really on the ball taking care of me - it's only been a year that I've been going there - it's a new project: Family Medicine, in partnership with the University of Calgary and the Alberta Health Care hospitals and they want to provide full service medical care. So I didn't think much of that doctor's phone call other than it was "really nice". Now reading all your posts on cellulitis, I didn't realize how dangerous it is - Thank you Gary, Necksoup and JON JON JON JON JON JON\ JON JON JON - now I know that they were terrified that I would develop an infection on their watch.

    Gary, you said: "The doctor said that cellulitis, if left untreated can be deadly..." and I think it was Jon who said that you don't want it to go into your muscle or you face amputation, and I want to know Why and How. Why could it kill you and How can it get into your muscle? How do you know if it is in your muscle?

    What I find really strange is my muscles in my sort of paralyzed right leg won't get strong. It's as though they are dead or something. I walk around the apartment with the walker and lately, dragging the right leg ; my muscles hurt but not the kind of hurt after you've done a good work out. They hurt and don't get strong. And when they hurt, my lower back hurts and I get mad as hell and throw the walker across the room and swear until I'm hoarse. And then I have to crawl across the room to get the walker.. yeah, real mature.

    Thank you everyone for your knowledge. It's time I shut up and listened for a while.


  • I am glad that your Drs are aware of you condition. Pimples that multiply could be another infection. Is there a large red area where the swelling is? Do you have a fever also? One of my neighbors has had cellulitis and he is out walking his dog every day. He was told that walking helps increase circulation that improves the natural lymphatic response to the infection. The cellulitis makes you more susceptible to other skin infections that can make everything worse. Some would have a high fever, some become unaware of surroundings. I have seen some nasty cases -see private message-and they were all treated successfully, but it takes some time. If you hate winter what are you doing in Calgary, lol.
  • pepper
    you have to be careful with celliitus. it can be deadly if untreated. you can develop gangrene and the infection can spread to vital areas. it is a staph infection. the first time i was in the hospital for 3 days given iv antibiotics and iv narcotics for pain. they draw a line around the infection to make sure it does not grow. the second time about 2 weeks ago they were more cavalier about it and i was kept in er for a day with only one bag of iv antibiotics. they did a cat scan for blood clot ann x-ray and an mri to make sure infection was not in the bone or in the muscles. i have no idea why the change in attitude with doctors since i was assured that if i went to the er, sent by the dr, i would be admitted and given iv antibiotics but i was not. i guess different drs have different ways of treating. it has been 2 weeks and looks a lot better, the swelling is down but the redness, albeit less in intensity, is still there. i have 4 more days of oral antibiotics. it is very obvious if you get it.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Last week I slipped on something on my kitchen floor and went flying. (I really hate that second where you realize that you are falling and there's not a damn thing you can do about it) I landed on top of my walker and actually bent it, but got a large bruise on my shin and one on my cheekbone. I'm used to bruising easily but the bruise on my shin worried me. I was just starting to relax about it until last night. Normally my bruises change color, spread out, and disappear. This one stayed blue and didn't change in size. Last night after I had read all your messages and I was feeling apprehensive, I took a look at the bruise. It had rotted! I touched it and it was all mushy (anyone watch The Walking Dead?) So I've put antibiotic cream and bandages on it and am hoping it will not get any worse. I'm so tired of hospitals.

    Do you think there can be something such as being too worried, too apprehensive, as opposed to being normally vigilant?

    I tend to think so, but then I have to remind myself that there have been a great deal of strange, abnormal things happening with my body this past year so perhaps not.

    What do you think?

  • terror8396tterror8396 Posts: 1,831
    edited 11/22/2013 - 9:59 PM
    i would watch it. cellilitus is a disease that one must stay on top of. even if you don't know, see a doctor asap. you could lose a leg or worse.
    take care nan and welcome to the site
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Hi Jon and others,

    I know I sound flippant, but the truth is I'm scared. Terrified, in fact. I was going to go to bed - it's 4 a.m. - but I'm too tired to get there.

    I think that up until now I didn't take it seriously was because they didn't in the hospital. The doctors were far more concerned with the spinal fluid leaking out of my incisions, the nurses were more concerned with bowel movements and my "language", so I was hooked up to a pic line with bags and bags of fluid and no one paid attention to my legs. Oh yes! They were covered with white stockings to prevent blood clots.

    I cried and begged them to cut my toenails that were hard and sharp like an animal's but they weren't allowed to. ??? And of course I couldn't reach them.

    The infectious disease doctors were the ones who looked at my legs and told me I must have had cellulitis because of the way my legs looked. It looked like plain old edema and a sunburn to me.

    I'm just going to change the bandages one more time and go to bed. If it looks bad in the morning, I'll go to the hospital. The walks and roads are dry, so I don't have to fight snowdrifts. Ha.

    Thank you everyone.

  • if anyone knows or cares, now the skin on my right leg is peeling off. like a sunburn. it is like i got a sunburn on my leg and the skin is peeling off. not big sections but some areas behind and to the left of the knee. it is officially weird now. with cellilitus the skin gets red hot and swollen but the worse was on the right side of the leg. this is on the left.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Jon, do you have edema on your right leg, or did you just get over a big attack? The same thing happened to me while in hospital and to amuse myself and pass the time, I would slowly peel the skin and try to see if I could get a big one without ripping it. (real mature). What I assumed was that because the leg had been so swollen, that when it went down to almost normal, there was excess skin there. Is it very fine skin like tissue paper?

  • with my last bout after things started healing my skin pealed 3 different times. I attended a lymphedema (sp?) clinic at the hospital twice a week where they massaged the lymph nodes starting above the knees and working there way down to my foot. They then put a cream on the entire area and then double wrapped the leg. They showed my wife how it was done and she did the proceedure on my leg the other days. My leg has been completely healed for months now but my injured leg is still three shades darker than the normal color, doc says that's as good as it's going to be, but doesn't bother me, I'm to old to worry about vanity.
  • terror8396tterror8396 Posts: 1,831
    edited 11/25/2013 - 6:58 AM
    when my leg heals i have to also make an appt with the clinic and do the things that you have done. the cream is zinc oxide and i am allergic to it so i have a different wrap to use. after thanksgiving i will give the therapy office a call and start
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
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