Teacat
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thanson1964 I'm so sorry you are going through this! Just wanted you to know that I read your whole thread and I'm praying for you! Hang in there! You are strong!
THR what is wrong with my progress?
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Hi, I've read your Anterior story and it's so "young" from the surgery...I had high/great expectations when I finally made the leap, but here I am 2.5 yrs out and in so much overall body pain...Knee is worse, ankle way worse, all right sided... Actually, I believe my surgery went relatively well all in all, and 5 months post op everything went down hill FOR ME... I posted about the IT bamd mess and got some suggestions on that one...
I have done so much therapies in the last 2 yrs, I could have camped out at the rheumy's office, then there were the eufflexa knee injections, tried again after this surgery...
I hesitate to even comment here, as my outcome is far from my hopes...perhaps the old age thing doesn't help either, and throw fibromyalgia into it all....
Ok, I'm done, hang in and HOPE all will unfold really really good for you...you are much younger and I believe that is on your side....I think anyway....jam
Someone above mentioned anti inflammatories and I've tried SO MANY over the years and take a couple now and do a lot less life, thank goodness my life was very full before all this...that helps me accept what is.
I have done so much therapies in the last 2 yrs, I could have camped out at the rheumy's office, then there were the eufflexa knee injections, tried again after this surgery...
I hesitate to even comment here, as my outcome is far from my hopes...perhaps the old age thing doesn't help either, and throw fibromyalgia into it all....
Ok, I'm done, hang in and HOPE all will unfold really really good for you...you are much younger and I believe that is on your side....I think anyway....jam
Someone above mentioned anti inflammatories and I've tried SO MANY over the years and take a couple now and do a lot less life, thank goodness my life was very full before all this...that helps me accept what is.
Vida
post-grad
Hi there. Just wanted to add another voice to your support group. Here's hoping they resolve your infection problem and ease your pain very soon. You have been extremely brave and strong in advocating for yourself: hang in there.
sharonslp
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thanson, this is scary for you, I know. Please use us to rant and vent and process through this as much as you need. And use us to help you get past this and get to a real recovery. Infection is a setback, but now you know what you are dealing with and there are protocols to treat it. Wish we could reach out and hold your hand for real...
Sharon
Sharon
nerdgrrl
graduate
Wow, Thanson, that is terrible! Just adding my voice to your support group. We're thinking of you! Thank goodness you have been persistent, but so sorry your docs have let you down.
tashia
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I just read your story. Wow I am so sorry that you have travled this road. I know its ruff right now but the road will get better in time. Please keep us informed so we can surport you in this journey. Please take care. Tashia
ByGosh
post-grad
Dear Thanson, I just read your story, and I am so sorry that you're going through such a horrible ordeal. I know you'll be able to get lots of encouragement and support from this forum, and we'll be waiting to hear how things are turning our for you. At least now there's an answer to all of your pain and your feeling that things weren't right. You knew! Now they can get down to the business of treating what's wrong and getting you better!
Good luck, dear girl. You'll come out on the other side of this. Sending you all good wishes and much encouragement.
Good luck, dear girl. You'll come out on the other side of this. Sending you all good wishes and much encouragement.
Josephine
NURSE DIRECTOR EMERITA
The 'film' around the nerve is called the myelin sheath and to lose it is catastrophic. It means the neurons in the nerve constantly fire off pain signals even when there's nothing to stimulate them. I've seen it before and try as they might, the patients were totally unable to get any treatment to subdue it short of having the nerve excised which is drastic. Mind you, this was about 20 years ago! I think you would need to see a neurosurgeon to get the most recent thoughts on this.
What kind of device do you have? Is is metal on metal?
This is really upsetting and worrying news, I know, but please be assured that there are protocols for dealing with infected hip replacements which are generally very effective. There are two different methods, a two stage and a single stage but it really depends upon the surgeon's experience which will be used. I can advise you this, though - this is not a dire emergency. It can first be treated with IV antibiotics to get the worst of it to settle down, then decisions can be made about which method of treatment to use.
I do strongly advise you to find a hip surgeon who specialises in revisions and in infections because they have the quantity experience to get a good result for you. To find such a surgeon, check this out Using "Find a Clinic" to find revision surgeons.
Kim22
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thanson1964 I am so sorry that you have had such a dreadful experience and that the surgeons did not listen to your concerns.You are in my thoughts and prayers and hope you get some answers very soon
OP
OP
thanson1964
new member
oh my gosh, thank you everyone for your support.
I ended up going to the ER, I have been in the hospital for 8 days. They pulled fluid from the subcutaneous serosa that measured 2x3x16 (big right) and that culture came up negative until the 3rd day, then it grew staph. I have had a 3 part bone scan and the bone scan revealed intense accumulation of the tagged white blood cells at the left hip joint and in my stem of the prosthesis. It also mentioned that there has been mild to moderate change since the bone scan they did on 2/21 - which was not a 3 phase bone scan. The NM tech advised that they pull fluid from my hip joint to confirm. They also put a drain into the serosa located on my left thigh.
Now here's the kicker....the Infectious Disease doctor is naysaying the results from the NM Bone scan - 3 part - because there wasn't any evidence of infection under the microscope and the fluid was clear yellow fluid. This is the same thing he said about the fluid they pulled from my thigh and eventually the culture grew staph - I brought up this concern and he said it is a wimpy form of staph and if he is wrong he guesses I'll end up in the emergency room again. Can you believe that?
I have copies of all of the test results and the NM bone scan clearly indicates strong evidence to believe my hip is septic. What would you do? My surgeon is out of town and won't be back until Monday. I have made a follow up apt with him. I do not want to see the ID doc for follow up as his mannerism plain suck. He told me I am strange as the results for my tests are confusing and weird. Well, ok.... am I just supposed to trust him when the bone scan very clearly indicates a septic hip? I asked him for an explanation as to why there was an intense accumulation of tagged white blood cells, he had not other answer......he said maybe my hardware is loose, the scan states that there is not reason to believe the hardware is loose. He said he doesn't believe I am in enough pain to convince him that I have a septic hip. The culture of the fluid pulled from my actual hip joint will be contained for 72 hours, then they toss it. I hope it grows before then because I am completely positive something is very wrong.
My thigh looked like an elbow it was so swollen. I could not bear weight on my left leg, I could barely squat to go to the bathroom, I cried for 2 days in pain, I was vomiting and had the chills and had a fever that kept going all over the place. They drugged me up with dilauded, morphine and oxycodone, I am on a PCA and that PCA was continuous from 10pm to 6am because my pain was so high. I have a very high tolerance for pain, PLUS I have been dealing with this for 5 months. Now, if the test indicates YES I have a septic hip, what am I supposed to think? I am on all these strong pain meds and still experiencing pain. The ID doc claims I don't exhibit enough pain to convince him that my hip is septic. Well, hello?
I am so doped up, no wonder I can walk but not without a cane or walker. What should I do? I am afraid that if I just let him have his way, this infection will get worse and worse and it will end up being an even more horrific experience. For the first 4 days I was here, I was on vancomycin and Rocephin, IV antibiotics every 12 hours. Then after the staph grew (staphylococcus epidermis) they changed me to Keflex IV antibiotics - cefazolin. Oh and by the way, the 3rd part to the bone scan that showed an intense accumulation of tagged white blood cells in my left hip was done 7 days into the IV antibiotics, there must be infection because don't you think the antibiotics would've done something by now? help.
I ended up going to the ER, I have been in the hospital for 8 days. They pulled fluid from the subcutaneous serosa that measured 2x3x16 (big right) and that culture came up negative until the 3rd day, then it grew staph. I have had a 3 part bone scan and the bone scan revealed intense accumulation of the tagged white blood cells at the left hip joint and in my stem of the prosthesis. It also mentioned that there has been mild to moderate change since the bone scan they did on 2/21 - which was not a 3 phase bone scan. The NM tech advised that they pull fluid from my hip joint to confirm. They also put a drain into the serosa located on my left thigh.
Now here's the kicker....the Infectious Disease doctor is naysaying the results from the NM Bone scan - 3 part - because there wasn't any evidence of infection under the microscope and the fluid was clear yellow fluid. This is the same thing he said about the fluid they pulled from my thigh and eventually the culture grew staph - I brought up this concern and he said it is a wimpy form of staph and if he is wrong he guesses I'll end up in the emergency room again. Can you believe that?
I have copies of all of the test results and the NM bone scan clearly indicates strong evidence to believe my hip is septic. What would you do? My surgeon is out of town and won't be back until Monday. I have made a follow up apt with him. I do not want to see the ID doc for follow up as his mannerism plain suck. He told me I am strange as the results for my tests are confusing and weird. Well, ok.... am I just supposed to trust him when the bone scan very clearly indicates a septic hip? I asked him for an explanation as to why there was an intense accumulation of tagged white blood cells, he had not other answer......he said maybe my hardware is loose, the scan states that there is not reason to believe the hardware is loose. He said he doesn't believe I am in enough pain to convince him that I have a septic hip. The culture of the fluid pulled from my actual hip joint will be contained for 72 hours, then they toss it. I hope it grows before then because I am completely positive something is very wrong.
My thigh looked like an elbow it was so swollen. I could not bear weight on my left leg, I could barely squat to go to the bathroom, I cried for 2 days in pain, I was vomiting and had the chills and had a fever that kept going all over the place. They drugged me up with dilauded, morphine and oxycodone, I am on a PCA and that PCA was continuous from 10pm to 6am because my pain was so high. I have a very high tolerance for pain, PLUS I have been dealing with this for 5 months. Now, if the test indicates YES I have a septic hip, what am I supposed to think? I am on all these strong pain meds and still experiencing pain. The ID doc claims I don't exhibit enough pain to convince him that my hip is septic. Well, hello?
I am so doped up, no wonder I can walk but not without a cane or walker. What should I do? I am afraid that if I just let him have his way, this infection will get worse and worse and it will end up being an even more horrific experience. For the first 4 days I was here, I was on vancomycin and Rocephin, IV antibiotics every 12 hours. Then after the staph grew (staphylococcus epidermis) they changed me to Keflex IV antibiotics - cefazolin. Oh and by the way, the 3rd part to the bone scan that showed an intense accumulation of tagged white blood cells in my left hip was done 7 days into the IV antibiotics, there must be infection because don't you think the antibiotics would've done something by now? help.
BarbaraR
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thanson1964, is there someone in the hospital from whom you can get a second opinion?
ByGosh
post-grad
thanson1964 It sounds like one thing that you could use is an advocate. Do you have anyone who can help you? I wonder if you contact the social workers and told them the story, if they would be helpful to you? I don't know, I'm just brainstorming here. I do think another opinion would be appropriate. How can you manage all of this, being so sick? My god, you are strong!
Perhaps if you tag Josephine, she can continue to provide you with guidance. I wish there was more that we could do here. Maybe another opinion, a different hospital.... Keep your spirits up, and see if any of the nurses are friendly enough to talk it out with. They may be able to give you some advice. Good luck, honey! Keep writing to us. We're in your corner, rooting for you.
Perhaps if you tag Josephine, she can continue to provide you with guidance. I wish there was more that we could do here. Maybe another opinion, a different hospital.... Keep your spirits up, and see if any of the nurses are friendly enough to talk it out with. They may be able to give you some advice. Good luck, honey! Keep writing to us. We're in your corner, rooting for you.
Dee205
senior
Thanson,
Haven't been on in awhile but I just read through your bumpy journey. I can't offer any medical advice but will be keeping you in my thoughts and prayers. What a tough time you have had.....I hope things change for the better soon
Dee
Haven't been on in awhile but I just read through your bumpy journey. I can't offer any medical advice but will be keeping you in my thoughts and prayers. What a tough time you have had.....I hope things change for the better soon
Dee
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I am so sorry.. Let's get Jo back to comment
I can only imagine if they had prescribed antibiotics that were resistant to the infection initially before the result of the culture, those antibiotics may not have been much help.
You sure need to seek a second opinion, you don't want to hear 'maybe's' from a Doctor, you want a definitive diagnosis and the appropriate protocol to treat it.
Josephine
I can only imagine if they had prescribed antibiotics that were resistant to the infection initially before the result of the culture, those antibiotics may not have been much help.
You sure need to seek a second opinion, you don't want to hear 'maybe's' from a Doctor, you want a definitive diagnosis and the appropriate protocol to treat it.
Josephine
Josephine
NURSE DIRECTOR EMERITA
Hanson, who told you you had a "serosa"? I've never heard of such a thing and my research is only showing up evidence of such associated with organs and gut.
You have also not answered my question regarding what kind of hip replacement you have - is it metal on metal?
There may well not be - you've been on a lot of antibiotics which renders such specimens sterile.
And it might well be. I said so earlier and so did your surgeon. Xrays may not reveal it to the untrained eye but all of this tells a story.
They don't grow it for 72 hours they just keep it in the fridge. And after 3 days it's useless anyway. That's why it's tossed.
Wait until Monday. What else can you do - and it's not that far away anyway.
BarbieJ
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Thanson, I am so concerned about you. Your story has some of the same parts to it as mine. I had the anterior approach too and I have been miserable. I fear I may have an infection in my hip so I will be watching your threads and praying for you. Since these infections are rare (1 - 2%) I feel I have entered the twilight zone because doctors cannot do anything unless they have hard data. The bacteria is insidious and can be hard to detect. I am 16 months out and walking with a cane. You r bacteria must have been acquired during surgery. I have had a cascade of problems since surgery, urinary tract infections, tooth extractions on top of nerve damage and tissue damage and watching my body fail is frightening.
I pray that since this is soon after your surgery you can begin the hard work and pain of getting it cleared up now
I am moving my care to another state. I am trying Mayo to see if they can help me out. I am prepared to pay what is not covered by my insurance which may be costly but I want my care at an A rated hospital. My original surgeon put similar statements in his surgical notes. I was not very well informed of the risks. I wish I had not done anterior. Would rather he had opened me wide open to get a clear look at things.
There are several people on this website who have had a late infection and the surgeries. glynis is one. Please can you tell us how you are coping. It is scary but you can get through this. It is helpful to read about those who did. You are young and strong and you will get there too.
I pray that since this is soon after your surgery you can begin the hard work and pain of getting it cleared up now
I am moving my care to another state. I am trying Mayo to see if they can help me out. I am prepared to pay what is not covered by my insurance which may be costly but I want my care at an A rated hospital. My original surgeon put similar statements in his surgical notes. I was not very well informed of the risks. I wish I had not done anterior. Would rather he had opened me wide open to get a clear look at things.
There are several people on this website who have had a late infection and the surgeries. glynis is one. Please can you tell us how you are coping. It is scary but you can get through this. It is helpful to read about those who did. You are young and strong and you will get there too.
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