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Old 01-17-2008, 11:25 AM   #1
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stepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB User
Re: Chronic osteomyelitis

I am a little frustrated because I can't seem to find much information about why my infection keeps coming back. I really hope I can reach you, so I can ask you some questions Also, I am feeling pretty low right now It sounds like you found a positive voice while going through a very tough time. I sure could use some help with that. I am normally a very positive person, but this mess is really taking a toll on me.

Here is what has happened to me -

7/06 ankle fusion, diagnosed with osteomylitis 9/06 after spending a week in mind-splitting pain. 2 debridement surgeries later, I take daptomycin for 6 weeks and I am deemed cured.

11/9/07 - Bunionectomy performed. My toe had gone crooked subsequent to my ankle fusion. Dr waited until I had been healthy for a year hoping I wouldn't have infection again. Even gave me iv vanco for 48 hours after the surgery.

11/28/07 - end up in ER with symptoms of infection - redness, swelling, extremely sensitive to the touch all around my big toe and incision site. Pins were still in from bunionectomy, so no MRI performed to rule out osteomylits.

12/27/07 - antibiotics stopped. Infectious Disease tells me there is no other way to know if infection is gone other than to go off meds and see what happens. Says I should watch closely for 2 weeks.

1/13/08 - I am woken up by horrible pain - the only other pain I have felt like it is when I had osteolytis in ankle bone. I wonder if maybe I overdid it the day before, so I medicate and elevate all day. The next morning - still red and now little bumps are forming. I go to work promising my hubby I will call doc.

1/14/08 - Infectious Disease Dr confirms cellulitis has returned. Could be in the bone, could be an abscess we didn't get rid of before, could be in the joint, could be that we stopped antibiotics too soon. We start vanco through picc line right away.

1/15/08 - Go to ortho surgeon. He gets faster MRI appointment. He takes x-ray. Says clinically and radiographically I look great. Waiting for MRi results. Says he will call me as soon as he reads the report and talks with ID
DR.

1/17/08 - sitting here waiting to hear from drs about the mri results. They should have received the report this morning. They need time to analyze and speak with the mri reader if necessary. I know all of this, but I hate to wait. I just want definitive answer.


Has anyone else been through osteomylitis and cellulitis and the return of any of it? I just feel like I am beating my head against a wall when I try to get answers to my questions. Some of the medical professionals on my case say I must be predisposed to infection, but I had many surgeries before ever acquiring an infection. It seems like now that I have had one infection, I will always get them. I also wonder why they haven't cultured this infection. The first one after my fusion was cultured, so they knew it was MSSA. I don't know why technology isn't better at diagnosing osteomylitis. The MRI is not even 100% because if you have had recent surgery or if there is any metal in the bone, it can compromise the results. Why don't they have another way to diagnose????

I would love it if someone could tell me their story or send some encouragement my way.

Thanks!
Step

Last edited by moderator2; 02-02-2008 at 02:52 PM. Reason: making a new thread - please do not bump up old topics

 
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Old 01-20-2008, 07:38 PM   #2
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Re: Chronic osteomyelitis

Hi, Im a little new to this and your situation was the only one that I could some what relate to. I have a above the knee amputation that accured august 2006. I have a prosthetic but still on crutches till this day. I have been unable to put weight on the prosthetic and my stump just plain hurts. As of a month ago I found out I have osteomyelitis and will be having surgery Jan. 25. I'm scared this will happen again but I hope it doesn't. I hope you can give me some insight on how to deal with the pain and I hope I can at the very least give you a shoulder to lean on as well.

 
Old 01-21-2008, 04:27 PM   #3
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stepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB User
Re: Chronic osteomyelitis

Mandi,
I am so glad you have come to the board! I would love to share any information I have with you and to provide a shoulder for you to lean on. It is tough to find much out there about osteomyelitis, and the members of this message board don't seem to post on this infectious disease page as much as they do other pages like foot problems and pain management. It is nice to finally have someone to post with.

As far as the pain goes, I have been told by people in the medical profession as well as my pain mgmt nurse that there is little that is worse than bone pain. Therefore, they tell me it is hard to manage the pain that results from osteomyelitis. When I had my first bout in 2006, I had never felt a pain that horrible. I was on percocet and baclofen at the time, but they couldn't even touch it. There would be shooting pain and spikes that were off the charts. My pain stayed at a seven about 24 hours a day. Before it was diagnosed, I went to the ER. All they had to say was that my pain was due to the nerves that were traumatized during my ankle fusion. It turns out, my infection was probably getting a good start at that time. Once I was admitted into the hospital a week later they put me on IV Dilaudid and that brought it down to about a 4. It wasn't until they put me on a long acting pain med - oxycontin - that I felt it was finally under control.

My insight regarding pain is that it is extremely effective to go to a pain management center. I prefer to have a pain specialist in charge of my pain instead of a general physician. I'm not sure if you already have pain mgmt involved in your case or not, but it really does make a big difference. Another important piece of my pain control is to have a long acting med that I take every 12 hours and another med used only for breakthrough pain. My pain mgmt nurse just talked to me last week about using imagery to help manage the pain. For instance, because I have an infection currently, I could imagine there are little tiny bugs in my foot and the antibiotics are eating them away little by little. I know it sounds a little crazy, but I am sure you can understand that when you are dealing with pain and infection long enough, you will try anything that might help you cope. She also said there are some changes you can make to your diet that may impact your pain. For example, one of her patients claims that he notices a difference in his pain level when he eats foods with a lot of white sugar. Who knows. There may be some truth to it/?????

Let me know a little more about you and your situation. I am sure we can help each other out.

Keep posting!

Step

 
Old 01-22-2008, 10:23 PM   #4
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mandi0623 HB User
Re: Chronic osteomyelitis

Step,
It's really good to be talking to somebody about this. I had never heard of osteomyelitis until now but I'm thankful that there is a name for this pain. For the longest I just thought I was weak. I have been to pain mgnt. clinics and they always want to put me on antidepressants to help with the phantom pain and I do not react well with any antidepressants. Crazy as it may seem I feel like I'm in a bubble outside of myself or I'm pulling my hair out and beating my head against the wall. I have this thing about being sober and in control since the accident. I get sick to my stomach and will back away real quick when it comes to meds. I do yoga and go for accupuncture but I just don't know what else to do since I have a issue about taking the meds. Heat helps my phantom pain but doesn't seem to be doing any good for the osteomyelitis. Is heat with the osteomyelitis wrong and how did you feel after the first bit of osteomyelitis? What is your little things that help you? Elevation, heat, or cold? I really want to thank you for any input you have given and in advance for what input you may give.

Mandi

 
Old 01-23-2008, 08:36 PM   #5
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stepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB User
Re: Chronic osteomyelitis

Mandi,

The pain I had with my diagnosed osteomyelitis was the worste pain I have ever felt. I was on percocet at the time with oxycotin 10 mg for breakthrough pain. The week before I was diagnosed, I ended up in the Emergency Room twice within 24 hours because the pain was soooo bad. I have a thing about being sober too. I am a recovering alcoholic/addict, so I am very careful to only take the meds as prescribed and talk with my sponsor on a regular basis.

I'm not sure how a person can deal with that much pain and not take any pain meds. I can tell you, however, that elevation does tend to help. Even now, I find as much as I can keep my elevated over my heart it does keep the swelling to a minimum. Heat seems to help me also. But I wonder if maybe the heat helps me feel better emotionally as much as physically.

I do some other things to try to deal with the emotional aspect of pain. For instance, I have a dog who seems to know when I am hurting. I stay in contact with people on this board, so I can get my feelings out. This board also helps me to realize I am not alone. Before this board, I felt very alone suffering through my pain. My husband tries to understand, but sometimes it isn't possible to really get it unless you have been there. I love music, mellow stuff, but not sad. It feels like it calms me. The most powerful imagery I have ever done when facing an extremely painful night, was picturing myself in the palm of God's hand laying curled up in a ball content and fast asleep.

I hope some of these ideas help. It has helped me just to talk about them. I have had a rough day. I finally heard from my dr after leaving him messages for 3 days. He still hasn't had his colleague re-read the MRI in the context of my history to determine if the infection is in the bone or not. He has decided that another surgery is not needed at this point. Surprisingly, I am a little disappointed. Not because I wanted to have surgery or be in the hospital again, but I wanted a definitive reason for the infection returning and for all the pain. I am already on antibiotics, so treatment is already underway. I just don't like not knowing. AND my boss seems to be getting pretty tired of my working half day plan and I have to tell her tomorrow that I need to stay on half days for a little while longer. I am not a patient person, so I don't do well with the wait and see game. Did you have any trouble with the diagnosis of your infection?

Well, I guess I am going to hit the hay for the night. It sure is nice to have someone to talk to about all of this. Let me know when your surgery date is, and keep asking questions.

Step

 
Old 01-28-2008, 09:23 PM   #6
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Re: Chronic osteomyelitis

Hey,

Well this may be a little short but I am so tired I can hardly hold my eyes open. I just wanted to let you know I just read your message and I will get back with you in the morning. I feel like I have left you hanging but I promise I will talk with you tom. I have so much to say.

Mandi

 
Old 01-30-2008, 08:09 PM   #7
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stepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB User
Re: Chronic osteomyelitis

Hi there!

Last night I was watching T.V. after dinner at about 7:30. Next thing you know, I was snoring so loud I woke myself up.

I dozed back to sleep, only to wake up at 1:00 AM wide awake! I got online and did some work which needed to get done, but I couldn't fall back to sleep until about 3:45 AM, and I get up at 5:00.

I have had a really tough time lately. I guess I have been patient long enough, and I have finally gotten frustrated. I was sitting in the hospital parking lot the other day crying my eyes out because I just want my life back. I have spent the majority of the past 2 weeks in one doctor's waiting room or another. I really haven't gotten too upset, frustrated or angry, even with everything that has been going on, until the day before yesterday.

I think I need to find a support group for people who have infections. Do you ever feel like you just need to talk to other people who are going through similar troubles?

I hope things are going well for anyone else who may be dealing with staph infection or any other life-altering illness and pain.

Step

 
Old 01-30-2008, 09:32 PM   #8
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susanl95 HB User
Re: Chronic osteomyelitis

Edited due to identifying information..

Last edited by susanl95; 03-03-2008 at 09:39 AM.

 
Old 01-31-2008, 07:44 PM   #9
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mandi0623 HB User
Re: Chronic osteomyelitis

Hey Step,
I read your message and my heart feels your pain. There has been many of times I stay awake at night, or I'm just out and I begin to cry because I just want my life back or just want to be the me I have known so long but every time I just have to pull myself together at the end of my crying and say I just have to learn that this is my life now and this is who I am now. Times will always get hard here and there and its even harder trying to figure out how to make things better and feeling like you have to do it all alone. I have a husband and a daughter that has been here since before the accident and my infections but yet I still feel all alone in this. In this last week I have realized even more so that I am not alone and it has do with talking to you and a few other people. I do think that this can only get better. I'm here to listen Take care and keep your head up.
Smile Too!
Mandi

 
Old 01-31-2008, 10:34 PM   #10
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susanl95 HB User
Re: Chronic osteomyelitis

Edited due to identifying information..

Last edited by susanl95; 03-03-2008 at 09:39 AM.

 
Old 02-02-2008, 12:38 PM   #11
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stepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB User
Re: Chronic osteomyelitis

Mandi,

Thank you so much for your kind words. They have really made a difference in how I feel.

Today, I am disappointed, frustrated and confused. About 2 1/2 weeks ago I had an MRI done to see if the infection was in the bone. The first reading said there was "possible osteomyelitis." My dr wanted to have his colleague who specializes in complex cases read the films. This dr was out of town for about a week, but he was back in the office Tuesday of this week. I have been calling my dr's office twice a day every day. Friday, his nurse called me and said the dr was going to call me the night before, but he had gotten called out of the office for an emergency. She told me he wanted an x-ray of my foot, so I was supposed to come in the afternoon. He didn't need to see me, but he did want to check out my foot. Then, he would call me between 5-8 in the evening. I went and had the x-ray done and waited by the phone all night last night. He never called.

So, this morning I have all sorts of thoughts running through my head - is he blowing me off and not even following up on things when something could seriously be wrong? Does anyone give a ****? Why even bother taking these antibiotics through an iv every 8 hours? Did I miss all that work for nothing? What comes next? Am I overreacting to the pain in my foot? Do I really even need to go to the dr appointments I have? Why is this happening to me? Why do I continue to jump whenever the dr says jump and rush to follow their directions, but wait forever to hear what the results are? Am I crazy?

I am tempted to look for a support group close to home. I believe I really need someone to talk to in order to ensure I am not crazy.

I hope things are going ok. for you. What is the latest in your story?

Keep posting! I would love to hear how you are.

Step

 
Old 02-11-2008, 10:50 AM   #12
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Re: Chronic osteomyelitis

Dear Stepbysteph,

Sorry to hear you have having such problems. I too suffer from what might be infection in the jaw from a tooth that does not show up on reg. xrays. I saw that you had an MRI done recently. Have you obtained the results? I was wondering if you had contrast with the MRI to show the poss. infection? I had an MRI of the head but had not with contrast. I was hopeing that it would show up on the MRI but have heard that it cannot be seen unless there is gadulium(sp?)/contrast.

Although I do not live in MO now I grew up around Columbia, MO!

Best of wishes to you and your healing!


Stephanie

 
Old 02-11-2008, 10:58 AM   #13
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Re: Chronic osteomyelitis

I wanted to add that you said............
Quote:
For example, one of her patients claims that he notices a difference in his pain level when he eats foods with a lot of white sugar. Who knows. There may be some truth to it/?????
I agree! I see a difference in pain level if I eat surgar of any type!

 
Old 02-11-2008, 07:11 PM   #14
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Re: Chronic osteomyelitis

Quote:
Originally Posted by Stephanie1 View Post
Dear Stepbysteph,

Sorry to hear you have having such problems. I too suffer from what might be infection in the jaw from a tooth that does not show up on reg. xrays. I saw that you had an MRI done recently. Have you obtained the results? I was wondering if you had contrast with the MRI to show the poss. infection? I had an MRI of the head but had not with contrast. I was hopeing that it would show up on the MRI but have heard that it cannot be seen unless there is gadulium(sp?)/contrast.

Although I do not live in MO now I grew up around Columbia, MO!

Best of wishes to you and your healing!


Stephanie
Thank you for your kind words. I appreciate them.

I did have an MRI with contrast. It was about 3 weeks ago, and my dr finally decided to listen to the radiologist and say the infection is actually in the bone. At first, he said he didn't have complete faith in the report from the first radiologist. He was thinking the abnormalities mentioned in the report were due to the bunionectomy and the metal he had placed in the bone. The radiologist who provided the second opinion said we were too far out of surgery to see that kind of abnormality. It had to be osteomyelitis.

I can't help but wonder - Why did he have to have so much proof? The Infectious Disease dr had already decided we were going to treat it as if it were in the bone, just to be on the safe side. I couldn't help but feel a little wierd about the whole deal. Later I realized diagnosing my infection as osteomyelitis would mean he would have to admit it may have originated in the bunionectomy when the metal was placed in my toe. All of the information I have found says osteomyelitis is caused either by a soft tissue infection adjacent to the bone that spreads, metal implanted into the bone is tainted/infected, or the bloodstream carries the infection to the bone. Evidence would point us to the ortho surgeon... Also, they were all so convinced during the soft tissue infection that there was only a slight chance it was in the bone at that time. I had a feeling it was. It feels different when it is in the bone compared to the burning of a soft tissue infection.

Anyway, enough about me. I would like to hear more about you and your story. Please post again.

Step

 
Old 02-11-2008, 10:25 PM   #15
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Re: Chronic osteomyelitis

Just a quick idea that may turn out helpful. I have three bone scans now that show infection in my upper jaw and sinuses, when the infection didn't show up on any other scan or xray. Since bone scans are nuclear medicine, I imagine that they can't really come out with a false positive. The stacer simply goes to the point of inflammation, and if they put cipro as the tracer, the cipro goes to the infected sites, and does not go to the sites of inflammation that are not infected (in my case some arthritic vertebrae). I was glad to have doctors here in Bolivia who were willing to listen to me and to keep persuing ways to get rid of my chronic infection. The good news is that I finally have the infection pinpointed. The bad news is that on all other scans, even computerized xrays, the bone looks healthy, so I have yet to find someone willing to operate to remove the infected bone. Of course, I will keep looking, because I really want to get well, and as we all know, antibotics alone will not get rid of infection in the bone. Anyway, my suggestion is that you ask for a bone scan with cipro as the tracer and see if that helps your surgeon in pinpointing and believing the problem. I believe I have a similar problem here with the oral surgeon because he removed my upper wisdom teeth, but in my case I believe the infection started getting into the bone even before he did the surgery, because my wisdom teeth were growing in, allowing bacteria to get to the bone, and lots of bacterial ended up everywhere because I couldn't open my mouth for three months after the lower wisdom teeth surgery due to the trauma on my jaw muscles. I am hoping that I can find a face/neck or oral surgeon who will be willing to operate based on my syptoms, blood tests and nasal cultures and the bone scans, even though the other scans do not show the infection. If anyone out there knows of a surgeon willing to take on a surgery like this, let me know. I can come up to the states if it means getting well!

Hopefully my story helps a bit.

Beth

Quote:
Originally Posted by stepbystep89 View Post
Thank you for your kind words. I appreciate them.

I did have an MRI with contrast. It was about 3 weeks ago, and my dr finally decided to listen to the radiologist and say the infection is actually in the bone. At first, he said he didn't have complete faith in the report from the first radiologist. He was thinking the abnormalities mentioned in the report were due to the bunionectomy and the metal he had placed in the bone. The radiologist who provided the second opinion said we were too far out of surgery to see that kind of abnormality. It had to be osteomyelitis.

I can't help but wonder - Why did he have to have so much proof? The Infectious Disease dr had already decided we were going to treat it as if it were in the bone, just to be on the safe side. I couldn't help but feel a little wierd about the whole deal. Later I realized diagnosing my infection as osteomyelitis would mean he would have to admit it may have originated in the bunionectomy when the metal was placed in my toe. All of the information I have found says osteomyelitis is caused either by a soft tissue infection adjacent to the bone that spreads, metal implanted into the bone is tainted/infected, or the bloodstream carries the infection to the bone. Evidence would point us to the ortho surgeon... Also, they were all so convinced during the soft tissue infection that there was only a slight chance it was in the bone at that time. I had a feeling it was. It feels different when it is in the bone compared to the burning of a soft tissue infection.

Anyway, enough about me. I would like to hear more about you and your story. Please post again.

Step

Last edited by BethCasaAzul; 02-11-2008 at 10:29 PM. Reason: typos

 
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