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Old 03-14-2004, 06:53 AM   #1
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jinxie HB User
Exclamation Possible Osteomyelitis

Hi everyone,

One year ago I had surgery to remove 2 pituitary tumors. I had the endonasal approach. Since then I have been battling an infection of the shpenoid and ethmoid sinus. I also have had 3 debri removal surgeries. I have been on and off antibiotics for this entire period of time.

At the last debri and scrape in Nov. 2003 they did a micro-culture which showed some staph aureus (few). However here I am 3 months later and I am so infected that it's unbelievable. My face looks like a punching back with deep purple circles and I have deep bags and swelling of my face. The ct scan and mri I had last week said that although they didn't identify Osteomyelitis they could not say for certain that I didn't have it. It did show evidence of chronic sinusitis with thickening and inflammation along the sphenoid wall. (I never had this trouble before) I am so darn frustrated with all of this.

I saw an infectious disease doc who now put me on avelox which isn't helping. I am not sure where to go or what to do.He suggested a PICC Line as a possible. But what good would it do if the crud if all up there? The neurosurgeon says that most of the time thses infections will reslove themselves.

All of my blood labs are normal. I am wondering if this could be a fungal infection up there?

Last edited by jinxie; 03-14-2004 at 07:04 AM. Reason: Sinus

 
Old 03-14-2004, 10:07 AM   #2
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gregv HB User
Re: Possible Osteomyelitis

Quote:
Originally Posted by jinxie
Hi everyone,

One year ago I had surgery to remove 2 pituitary tumors. I had the endonasal approach. Since then I have been battling an infection of the shpenoid and ethmoid sinus. I also have had 3 debri removal surgeries. I have been on and off antibiotics for this entire period of time.

At the last debri and scrape in Nov. 2003 they did a micro-culture which showed some staph aureus (few). However here I am 3 months later and I am so infected that it's unbelievable. My face looks like a punching back with deep purple circles and I have deep bags and swelling of my face. The ct scan and mri I had last week said that although they didn't identify Osteomyelitis they could not say for certain that I didn't have it. It did show evidence of chronic sinusitis with thickening and inflammation along the sphenoid wall. (I never had this trouble before) I am so darn frustrated with all of this.

I saw an infectious disease doc who now put me on avelox which isn't helping. I am not sure where to go or what to do.He suggested a PICC Line as a possible. But what good would it do if the crud if all up there? The neurosurgeon says that most of the time thses infections will reslove themselves.

All of my blood labs are normal. I am wondering if this could be a fungal infection up there?
Hey there,

Well i am not sure what kind of infection this could be. I do know that staph aureus is quite an annoying bacteria and cause a range of diseases. Perhaps one of which you are describing on your face. I also know that some strains can be extremely resistant to antibiotics as well. Go back to your doc and ask if it could be a fungal infection. Also ask him/her about vancomycin treatment for staph aureus. Hope that helps.

Greg

 
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Old 04-12-2004, 11:06 PM   #3
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Re: Possible Osteomyelitis

I am sorry to hear of your troubles. I have had Osteomyelitis of the mandible (jawbone) for 2 years. I am on my second PICC line. You will NOT get rid of your staph infection if you do not get a PICC line and get the antibiotics into your system to kill the staph - the IV is more concentrated and can reach the bone. Oral abx (antibiotics) do not have as good penetration. You must insist on getting VANCOMYCYIn as this is the most recent treatment approach for Staph. The longer you wait, the more damage you will have. If you suspect a fungal infection, have a sinus swab culture done - if one is found add an antifungal to your IV PICC line. I wish you a SPEEDY recovery!

in health,
Randi
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Old 04-24-2004, 08:28 PM   #4
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Re: Possible Osteomyelitis

I have just been diagnosed with osteomyeltis in my calcaneus, tibia and fibula. I am 2 months post-op an osteotomy with screw fixation. Have to get hardware out and they are debriding 2 or 3 times, later on will get a bone graft. Should get a PICC line for 6 weeks after surgery. But both the os's I have seen said the only way to know for sure if its osteomyelitis is to do a bone scan with indium. So may want to ask about that.

 
Old 04-27-2004, 12:01 AM   #5
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Re: Possible Osteomyelitis

Bone scans with indium didn't show my Osteomyelitis. Neither did a 1mm CAT, nor did am MRI with contrast, nor did x-rays, neither did blood work. the only for sure thing - is to be opened up. If you have a bone infection, 6 weeks of IV abx is NOT going to cut it. I have been battling this for 2 years. I suggest your cultures determine your abx, and hope that sensitivity tests will be done to assure you are on the correct abx, and that they don't stop it too soon. I wish you the best, ttfg
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Old 04-27-2004, 09:58 AM   #6
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jinxie HB User
Confirmed Osteomyelitis

Well, on thurs. 4/22 the neurosurgeon and ent went back up there. It's confirmed that I have right sphenoid, inter-cranial osteomyelitis due to direct contact from my original pituitary tumor removal. This is inches from my brain.

The neurosurgeon today told me that when he scraped the bone away it crumbled like cottage cheese. There was a wall of pus up there also. ARGGGHH! He's never seen anything like it before.

I came home with a picc line and a trial antibiotic until the microbiology reports come back. As of yesterday the bone "so far cooked a rare type of staphylococcus." but my infectious diseases doctor expects there will be more.

I am devastated and afraid that I will never ever be well again! I am also frightened by the magnitude of this as the original neurosurgeon knew he did something during the surgery and did not fess up.

So far I am nauseated all the time and am feeling very week. I am less than one week post op my 2nd brain/sphenoid surgery. I'll let you all know when the final paths come back. Thanks for all the support and information.

Last edited by jinxie; 04-27-2004 at 10:00 AM.

 
Old 04-27-2004, 02:05 PM   #7
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Re: Possible Osteomyelitis

This can be cured! You must be very aggressive. There is a therapy that has come back into use. Do a google search for dr. sherman and maggot therapy. It is used in extreme cases in the cranium, are you also working with an infectious disease specialisit? I have a PICC line aslo, I tested last time for STREP and beat it with Clyndamicin - you might suggest this at 3x day @900 mg dose. I have it in my mandible. It's stayed localized for 2 years. I recently tested + for anaerobes. You MUST be on a medicine for the anaerobes, perhaps Hyperbaric Oxygen Therapy? I am SErIOUS about the maggot therapy it could get rid of this thing in a matter of weeks!

You, my dear lady are in my thoughts until you are well... then I shall be inspired by you,
Randi
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Old 05-06-2004, 09:28 AM   #8
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Uodate!

Hi,

Thanks for the info Randi. I just saw my infectious disease doc yesterday. They did identify streptococcus viridans which is not susceptible and is resistant. The pus they removed cultured zero and they tried 3 x's!

This past fall they also identified staph aureus, not this time. This may be due to all of the antibiotics I had been on during the course of last year.

I have now been put on i.v vancomycin through my picc line. My infection is located inter-cranial at the right wing of the sphenoid bone at the base of the brain. YIKES!

My doctor at UW Madison is an awesome infectious diseases guy, very up.

I ma hoping this will knock it out once and for all!

 
Old 05-09-2004, 01:59 PM   #9
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StephanieVD HB User
Re: Possible Osteomyelitis

I just got home from the hospital, surgery was Monday and Wednesday.. I am now on Vancomyecin and one that starts with a C twice a day. The PICC is in. The infectious disease guys said they will do more biopsies and all in 6 weeks and see if there is anything new. There was only inflammation when they opened it up, but ID docs were concerned that the cultures weren't taken deep enough into the bone. Ortho surgeon thinks I just had an allergic reaction to the metal and foreign stuff from past surgeries, but was concerned due to the fact that my bone and indium scan looked horrible and he said the tests are pretty accurate.. Good luck guys!

 
Old 05-24-2004, 02:44 PM   #10
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Arrow Re: Possible Osteomyelitis

Stephanie,

Hi - you sound as you are doing better? I hope this is so! How is your pain level? The first cultures I had showed Strep and the second did not, they went deeper the second time. Don't worry - keep resting. You sound as though you have top doctors on this and that's most important. I am sending you healing thoughts

Is it Cleocin/Clyndamicyn (sp)? that you are also taking. Vanco should knock the crap out of anything Staph related. I would suggest to your ID doc to add a Cephlosporin to the mix - this kills anaerobes - everything else that was not found in your culures - and I think this is why my first efforts with the PICC line failed me. This time when I was cultured my labs were taken immediately to the pathologist - anaerobic infections do not live in oxygen, hence they must be in the petri dishes within 15 mins. If yours were,. OK then -= but if not, I would talk with your ID doc. Also, have they considered Hyperbaric Oxygen Therapy for you? It is an amazing adjunct when OSTEOMYELITIS is involved, especially cranially.

Hope this helps... heal,
Randi
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Old 05-29-2004, 09:17 PM   #11
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Re: Possible Osteomyelitis

Thanks so much Randi. I feel so alone in this. I am just about to turn 19 and am living alone in a brand new apartment and can't drive because I have been in and out of surgeries on the ankle the last 3 years. No one has actually talked to my ortho surgeon since before the first surgery (had 2 to clean everything out). I am confused. From what I have heard nothing grew but they stuck me on the vancomycin and cefepime because my IDs weren't sure cultures were taken right because they said my bone scan and MRI showed definite infection. So I am so confused. I don't want to find out I underwent general twice, a week in the hospital, and 5 IVs, a central line and then finally the PICC for 6 weeks for something that was misdiagnosed... even though ID is telling me it was there.. Argh. I am so confused. Not very trusting of anyone right now...

 
Old 12-07-2007, 02:07 PM   #12
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Re: Possible Osteomyelitis

I had the same thing as tryingtofeelgood in my jaw for two years. It did not show up in the scans. It acted like a bone infection that was a result of very invasive surgery to remove m impacted wisdom tooth that had grown into the jaw bone.

I was on tons of different antibiotics while I was in the states, but they told me since the scans did not show infection in the bone, they did not do surgery to cut it out. Here in Bolivia I have a good group of doctors that actually got together and because of my symptoms more than any other reason they talked a neck/face surgeon into doing the surgery on my jaw. There was a dental surgeon who was there as well, and since he knew my dentist, she was there in the surgery room as well. She told me that the surgeon cut into my jaw in the problem area and did a clean cut over and up, but that he did not see signs of infection. They later cultured the bone chips and found strep. Anyway, during the same surgury, the dental surgeon pulled out the top right wisdom tooth (same side as the jaw surgery) and a huge amount of pus came flying out from behind it, so they cleaned out the sinus between the tooth removal site and my nose. They kept me interned for three days. For the first day and a half I had an IV tube that they had put through the right side of my nose, and up near my ethnoid sinus then down into my stomach in order to feed me that way instead of by mouth to avoid any repeat infections in the jaw.
Well, all that to sum up that the jaw healed up very well and never hurt again. I was very thankful for that, because the jaw pain from that infection was incredible. This surgery was two years ago.

But here is where my problems continued. Even while I was in the hospital, I felt like I wasn't well yet, and felt like there was something wrong with a spot right by my right eyebrow, which I later found out is called the ethmoid sinus.

Over the last two years, it became evident that that painful area would begin to effect my upper sinuses, both sides, when not on an antibiotic and after weeks without an antibiotic, I became so sick with entire body ache, nausea and increasing pain in all my sinuses, esp on the right hand side, accompanied by pain behind the right eye, in the right ear and vertigo.

To me, having gone through two years of the similar symptoms repeating themselves because of a hidden infection in my jaw, I have become convinced that there must be some kind of microscopic infection of the ethnoid bone that gradually comes out of hiding enough to make me really sick, but not enough to be found in scans.

Thankfully, the bacteria has been isolated in nasal cultures, and I have felt great improvement every time I am on an antibiotic that the cultures show will cut back the staph, but the last culture showed that the staph coagulase negative is now resistant to almost every antibiotic, but still the scans do not show signs of infection. They even did a nasal endoscopy, but they can't see into the ethmoid sinus with a camera scope.

I just yesterday realized that a good possiblity for how the infection could have gotten into such an odd area could be the feeding tube that they had put in after my jaw surgery. The tube was put in by a nurse in my room at the hospital, and I think that it is very likely that it scraped the wall of the ethnoid sinus on its way through my nose and down to my stomach. The tube was manipulated up higher in my nose than normal because of the gauze that was filling up my right lower sinus. The tube certainly scraped up my stomach! I felt that the whole 36 hours that it was in!

I am now, two years later, interned for a week taking vancomycin, which was one of just two antibiotics that came back as still being effective. I just started today with my first dose, and it is amazing how much better I feel!

All of this to ask, Randi, did you ever get to do surgery on your jaw? What was the cause of the infection and did you get rid of it completely with long term antibiotics? What did you exactly do?

I am curious what you did, so that I can mention your case to the doctors and see if they may be willing to give me the treatment that you did, or even go ahead and clean out the ethmoid sinus area.

I do have a good group of doctors here and to my advantage, they do not have all the suing problems that go on in the states, so they are more willing to do things a bit more invasive, if they believe it will really resolve the problem.

I have just been reading in the forum about the PICC line. I don't know if they do that here yet, but I may ask them about it if they feel that I should continue for many more weeks on IV antibiotics.

Thanks!

Last edited by BethCasaAzul; 12-08-2007 at 11:34 AM. Reason: a few errors that I made

 
Old 12-08-2007, 10:08 AM   #13
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stepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB User
Re: Possible Osteomyelitis

Beth,
I have not had an infection in my sinuses or anywhere near my brain, but i have had 2 infections - one in my ankle (osteomyelitis) and one on my toe (cellulitis). I had a picc line for the first infection last year, and I have one again now for my toe. I can tell you - they definitely work! I have vanco this time and it seems to be going well.
I am impressed by your doctors and the willingness they are showing in listening to you. I have tried to tell my doctors what I think is happening before, but they seem to dismiss it.
Good luck and keep posting, so we know how this turns out!
Step

 
Old 12-08-2007, 10:42 AM   #14
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Re: Possible Osteomyelitis

Quote:
Originally Posted by stepbystep89 View Post
Beth,
I have not had an infection in my sinuses or anywhere near my brain, but i have had 2 infections - one in my ankle (osteomyelitis) and one on my toe (cellulitis). I had a picc line for the first infection last year, and I have one again now for my toe. I can tell you - they definitely work! I have vanco this time and it seems to be going well.
I am impressed by your doctors and the willingness they are showing in listening to you. I have tried to tell my doctors what I think is happening before, but they seem to dismiss it.
Good luck and keep posting, so we know how this turns out!
Step
How long and what dose of vanco are you taking right now?

I am only scheduled for seven days, 4 divided doses each day, slow drip. I think the doctor would have me take it longer--but part of that may depend on if they can do a PICC line here and if they are willing to.

He did mention an oral antibiotic that he wanted to give me to continue with, but I am not sure what it is.

 
Old 12-08-2007, 11:13 AM   #15
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Re: Possible Osteomyelitis

Thanks, step, for your encouragement.

How long and what dose of vanco are you taking right now?

I am only scheduled for seven days, 4 divided doses each day, slow drip. I think the doctor would have me take it longer--but part of that may depend on if they can do a PICC line here and if they are willing to.

He did mention an oral antibiotic that he wanted to give me to continue with, but I am not sure what it is.

I appreciate the help of anyone who may be dealing with or has dealt with an osteomyelitis that either hid itself like mine or for some other reason could not have antibiotic treatment combined with a surgery to try to remove the bacteria from the bone.

I wish I had taken the time to get on this health message board years ago!

Thanks.
Beth

 
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