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MRSA in hip - facing amputation
Started by Lisa C
Posted: December 15, 2008 at 01:07
My mother has been battling MRSA for 16+ months now and is quickly losing the battle, I'm afraid. She has osteomylitis (infection in bone) and is facing total leg amputation. The doctors are pretty much waiting for mom to give them the "go ahead" to amputate. She's been on several rounds of different antibiotics and as soon as they take her off and have her only on the oral antibiotics, the infection flares up again. She is 61 and has been on major narcotics for 10 years now due to several failed total knee replacements that kept coming loose. She had a "cementless knee replacement" which didn't come loose, BUT she broke her femur and the doctors recommended an artificial femur and hip replacement to secure it to since her bones are so weak (that of a 90 year old they say). All was well until she developed HA MRSA in the leg after that surgery. Now they're telling her amputation must be the entire leg from the hip down with no chance of a prosthetic leg because she has NO upper body strength + two torn rotator cuffs. She has an artificial knee on the other side as well as 2 metal plates in her back that I have feared might be succeptible to MRSA too. So far those areas are free of infection but I fear if we keep fighting with such a low chance of suceeding that we may jeopardize her heath. She is sooooo afraid of losing her leg, she'd rather die. I wonder if anyone knows how I can get her some help with dealing with this atrocious situation. I think it could help if she could talk to someone who's "been there, done that". Thank God for this forum, it's at least comforting to know we're not alone in this. God Bless.
Lisa
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Re: MRSA in hip - facing amputation
Reply #1 by Lisa C
Posted: December 15, 2008 at 04:55
I had a bad hip replacement in 2007 that almost cost me my life. I also contracted an HA MRSA infection during that procedure. I ultimately was in a fight for my life.

I have no idea where your mother lives, but if she can get to Sinai Hospital in Baltimore, Maryland, I think she may still have a chance. My doctor, Dr. Ronald Delanois, specializes in infected hips and knees and along with Dr. Michael Mont, are considered to be the best in the world. I think they walk on water.

You have nothing to lose. Please contact them.

Sinai Hospital of Baltimore
Center for Joint Preservation and Reconstruction
2401 West Belvedere Avenue
Baltimore, MD 21215
410-601-8500

I owe my life to them. I battled MRSA for almost a year and when it finally was controlled, this past summer I had a successful knee replacement. That speaks volumes.

I am currently facing rotator cuff surgery as well. Dr. Delanois will also do that surgery. I cannot speak highly enough about the integrity and skills these two remarkable doctors possess. And, along with Dr. Berg, the Infectious Disease doctor assigned to my case, we actually beat MRSA.
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Re: MRSA in hip - facing amputation
Reply #2 by Nancy R
Posted: December 15, 2008 at 04:57
Lisa, I accidentally typed your name for my post. Sorry. I sometimes forget.
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Re: MRSA in hip - facing amputation
Reply #3 by Lisa C
Posted: December 16, 2008 at 04:43
My mother made her decision and is having the amputation done tomorrow. Her health has gone down hill so much over the past year. She is has been in the hospital for 3 weeks now and they can barely keep her pain under control. She is on a Fentyl 100mg Pain patch, 3 grams IV dilaudid every 3 hours, (2) 10/325 percocet every 6 hours and oxycotone 80mg twice a day. She has been on narcotics so long she has a very big tolerance. All of that medicine and she's still between an 8 and 10 on the pain scale. Her sed rate was off the charts at 150+. Surprisingly, she has an incredibly good attitude after making this decision today, like a weight has been lifted off her body. Her ID Dr said to her today, "You haven't used that leg in over a year, it's dead weight you're pulling around that's full of infection". I ask for your prayers for her and my family, I know we'll need as many as we can get. I'll let you know how it goes.

Thanks,

Lisa
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Re: MRSA in hip - facing amputation
Reply #4 by Nancy R
Posted: December 16, 2008 at 05:23
Lisa:

I think she is making a wise decision. Quality of life is so important. Living a half life, more dead than alive, is no reason to hold on to any limb. I'll pray for her full recovery. This could lead to a major turn around.

hugs,

Nancy
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Re: MRSA in hip - facing amputation
Reply #5 by sandi
Posted: December 17, 2008 at 19:52
I had to have my leg amputated from below the knee and I know that is different, but I think once you make the decision, that is half the battle. If I had not had this done I think I would be dead today. I also got HA MRSA from ankle replacement surgery. Tell her to hang in there, she has a lot of living to do. She will be surprised how much she can do with a power chair or wheel chair, when she feels good. You can do nothing when you are sick. I hope and will pray that this will make her so much better she will get a new lease on life. Sandi
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Re: MRSA in hip - facing amputation
Reply #6 by Lisa C
Posted: December 18, 2008 at 02:04
Sandi, I read on another post about you and I'm so glad to hear from you. Mom had surgery yesterday late afternoon. It went well, and I am completely astonished at how well she seems to be doing. I expected her to be a wreck after she made the decision, and then surgery came so quickly, the very next day! She had lots of family hanging out with her most of the day in her hospital room and she laughed harder than she has in a very long time - talking about the good old days when we were kids....Good distraction until they came to get her for pre-op. We both cried and hugged, she got her double the normal person's dose of Versaid and Dilaudid and she calmed right down. Recovery was quite painful so last night was kinda rough, but she's great today, pain is less today and she has a really amazing outlook for someone who just had a total leg amputation. I don't want to get my hopes up because I'm still holding my breath hoping she doesn't suddenly loose it and sink into a great depression. How did you do "mentally" with it? Thanks for your prayers, she even wonders how she is being so strong, and we both pointed to the sky.

Lisa
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Re: MRSA in hip - facing amputation
Reply #7 by Nancy R
Posted: December 18, 2008 at 23:15
Sandi:

I was so happy to see you post and its great knowing you are doing so well. I can remember when you were in the depths of great despair. Just proves that there is life after MRSA.

Lisa:

Once your mom learns how to navigate, she will be amazed at how well she can get around. Frankly, she was so sick for so long, she probably expected to feel that way forever. Once the infection is gone, the body heals as quickly as it can.

Sandi is correct about the aids we have now. It's not like it was 20 years ago. I don't need to use my motorized chair right now, but I did for a lonnnnnng time. It was a godsend. As she gets better, she will need some special tools to make things easier. Keep your eyes open for things like sock helpers, grabbers, shower chairs, etc. She may well come home from the hospital with a bag of goodies. I did.

And, as SOON AS SHE IS ABLE, get her out of the house. Go to lunch, the park, shopping, whatever. Once she is no longer house bound, she'll enjoy life again. Do you have access to any senior centers? If so, check them out.
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Re: MRSA in hip - facing amputation
Reply #8 by sandi
Posted: December 19, 2008 at 20:24
I got cellius in my leg and had to go on Antibiotics(not MRSA) and was depressed for maybe one day. but I think the pain was so much better after the amputation, I felt a lot better. I have never been really depressed about my leg. I think when you have gone thu as much as me and your mom, this is just one more step. I am lucky my artifical leg is wonderful and can do almost anything now. I do have to have one more surgery to go my leg did not heal smoothly and it makes wearing an artifical leg a little harder, but that will not be until FEb. Please keep me informed about your mother and feel free to contact me on my email sandisampson@bellsouth.net. I will be praying for her. Sandi
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Re: MRSA in hip - facing amputation
Reply #9 by Lisa C
Posted: December 22, 2008 at 03:15
Nancy and Sandy - thank you for all of your support and prayers. So much has happened since I last posted (which was the day after her surgery. First I will say, she is still holding up sooooo strong (emotionally), which definitely helps me stay strong. Dec 16th was surgery. 2 days post-op, they got her up and put a safety belt around her, and she used her walker to go 10 feet! The doctors said she would be in a wheel chair for the rest of her life due to her health and torn rotator cuffs on both shoulders, not to mention that she has been laid up in the hospital for a good part of this past year causing her to be weak, no chance of a prosthetic leg...yada yada yada! 3 days post-op, they got her up twice, the first time she walked 40 feet with her walker. The second time 72 feet! The doctors are just dropping their jaws in utter shock. The physical therapist also said, this is very unusual, for her to be so mobile, so soon after total leg amputation. So they were ready to release her to short term rehabilitation. They hadn't removed her bandage yet to evaluate how it was healing, she hadn't gotten up to use the toilet for the first time, and mom was NOT ready to leave. Luckily, she was persistent and the doctors let her stay. Yesterday she was released in late afternoon and I got her to the rehab facility. I saw her today-a man from physical therapy came to talk with mom and find out what types of therapy she would need. He was surprised to see her sitting up in the bed. He wanted to see how mobile she was and turned around to get the wheelchair and mom said "Do you want me to get in that?" and he said, "Well don't you need it?" and she got up on her walker and showed him how she could get around on it. He said in 21 years he has never seem someone do what she is doing. I am so proud of her for being so courageous and strong. Her wound looks not as great as I'd like, they're watching it closely, because it's red and has some blisters and she's running a low grade fever. My brother and two sisters and our family will get together at the rehab facility to celebrate Christmas together, which will make mom so happy. I'll keep you posted and appreciate all the prayers. Nancy - I don't know your story, did you also have an amputation? Also, mom does have a lot of aids but I'll keep my eyes out for anything she doesn't have. And I plan to take her out ASAP, she's a die hard shopper...heck I couldn't keep up with her before her amputation because she used her scooter then, and nothing has changed, she'll still out shop me I'm sure!!
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Re: MRSA in hip - facing amputation
Reply #10 by Lisa C
Posted: December 22, 2008 at 03:17
Nancy - sorry, blond moment, I re-read your post above and your story.
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Re: MRSA in hip - facing amputation
Reply #11 by Nancy R
Posted: December 23, 2008 at 04:58
Lisa:

BRAVO! Well done! The human spirit is just amazing. I don't even know why the PT is so amazed. Heck, we see 3 legged dogs, heck 2 legged dogs getting around just fine. Why wouldn't a human being be able to figure it out, too?

Pain and infection are what keep us in bed. Once you control both of those little gems, then the healing can begin. So long as the infection is under control, she will heal and just do things differently than she used to.

Merry Christmas to both of you. What good news!

hugs,

Nancy


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Re: MRSA in hip - facing amputation
Reply #12 by Susan
Posted: June 26, 2012 at 18:13
At the moment I do not have MRSA, but suffer from Neuroibromatosis, (nf) which has caused a lot of trouble over the years. Hip replacement, knee replacement, then a break in the bone between the two. The nf is now growing at such a rate, my leg is so very heavy, I am walking on crutches and cannoot walk one step without them. I use a wheelchair. My only optyion now is to have a total leg amputation, but as this will be from the groin, there willl be no stump. I am 68, and would love to talk to someone who has low their whole leg. I live in the UK but thaqt doesnt matter, could we excchange email adresses.

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Re: MRSA in hip - facing amputation
Reply #13 by ladyk
Posted: June 27, 2012 at 17:45
Susan -

I’m sorry you are suffering.

I trust we are speaking about Neurofibromatosis (NF) rather than [suffer from Neuroibromatosis] as you wrote. I do not know your history of seeking medical assistance to help you with progressive symptoms of neurofibromatosis. In any case it is my opinion concerning any serious medical matter we face to seek ‘adept’ second (third, forth, so on) opinions from appropriate medical practitioners.

I also do not understand why other avenues have not been considered, such as surgery to reinforce (brace) bone rather than amputation?

*The skeletal complications of neurofibromatosis may include compression of the spinal cord, deformities of the spine (such as scoliosis or kyphosis), and *fractures of the tibia (the larger of the two bones extending from the knee to the ankle) which do not heal (called a "non-union" because the two ends of the fracture do "not unite" and heal).

In cases where the tibia has not developed appropriately, bracing of the leg is commonly used. In cases when the tibia has actually fractured, surgery is necessary. *The most common surgical procedure involves placing a rod down the middle of the tibia and then using bone graft (i.e. pieces of bone from another part of the patient's body or donated by another person to the bone bank) to close the fracture. Electrical stimulation to the fracture area may sometimes help in the healing process. One final surgical possibility is taking part of the fibula and transferring it along with its blood supply to the affected limb.

(Another example of bone bracing surgery.)
In cases of scoliosis it may be necessary to brace the spine. This is done when the curve is over 25 degrees and does not have a sharp angle. More severe scoliosis may require the placement of metal rods along the back of the spine to straighten the curvature. In cases where one leg grows longer than the other, a surgeon can fuse the growth plate so that the shorter leg has time to catch up. There are also techniques to lengthen the shorter leg.

*Have you consulted with an orthopedic surgeon for second opinion concerning bone bracing surgery rather than amputation?

-

FYI concerning affliction.
Neurofibromatosis (von Recklinghausen disease) is a genetically-inherited disorder. About half of cases are inherited, and the other half are due to spontaneous genetic mutation.

NF 1 and NF 2 are each related to changes in separate genes:
The NF1 gene is located on chromosome 17.
NF2 has been traced to chromosome 22.

con't
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Re: MRSA in hip - facing amputation
Reply #14 by ladyk
Posted: June 27, 2012 at 17:53

Abnormalities of the skeleton, such as the thinning or overgrowth of the bones in the arms or lower leg, curvature of the spine (scoliosis), and other bone deformities also may be features of NF1...

[To diagnose NF1, a doctor looks for two or more of the following:
-six or more light brown spots on the skin (often called “café-au-lait” spots), measuring more than 5 millimeters in diameter in children or more than 15 millimeters across in adolescents and adults;
-two or more neurofibromas, or one plexiform neurofibroma (a neurofibroma that involves many nerves);
-freckling in the area of the armpit or the groin;
two or more growths on the iris of the eye (known as Lisch nodules or iris hamartomas);
-a tumor on the optic nerve (called an optic nerve glioma)
-abnormal development of the spine (scoliosis), the temple (sphenoid) bone of the skull, or the tibia (one of the long bones of the shin);
-a parent, sibling, or child with NF1.]

*Because many features of this disorder are age dependent, a definitive diagnosis may take several years.

-

NF2... is usually not diagnosed until older. Hearing loss in the late teens and early twenties is often among the first symptoms of the disorder, and is caused by tumors growing on the auditory nerves (which carry electrical impulses from the inner ear to the brain, allowing us to hear) on one or both sides. Other symptoms of NF2 include continuous ringing in the ears, headache, facial pain or weakness, and feeling unsteady or off balance.

Informative Link
National Institute of Neurological Disorders and Stroke/National Institutes of Health
http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm#192903162

-

Susan, a serious surgical consideration… is the risk of infection. We all know that stats depict high rates ‘globally’ for HAI (Healthcare-Associated Infections), and this is where MRSA, Pseudomonas aeruginosa, along with a myriad of other mutated and non mutated pathogens take the opportunity to infect us via invasive treatments of any kind.


[Healthcare-associated infections (HAI) are infections caused by a wide variety of common and unusual bacteria, fungi, and viruses during the course of receiving medical care. Medical advances have brought lifesaving care to patients in need, yet many of those advances come with a risk of HAI. These infections related to medical care can be devastating and even deadly. As our ability to prevent HAIs grows, these infections are increasingly unacceptable. Recent successes in HAI elimination have been very encouraging. Reductions have been demonstrated for other HAIs as well, but much more remains to be done.

con't
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Re: MRSA in hip - facing amputation
Reply #15 by ladyk
Posted: June 27, 2012 at 17:57

Wherever patient care is provided, adherence to infection prevention guidelines is needed to ensure that all care is safe care. This includes traditional hospital settings as well as outpatient surgery centers, long-term care facilities, rehabilitation centers, and community clinics.] http://www.cdc.gov/hai/

Related
Healthcare-associated Infections (HAIs)
*Diseases and Organisms in Healthcare Settings
http://www.cdc.gov/HAI/organisms/organisms.html

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Susan, it is in your best interest to thoroughly understand your affliction in order to make informative decisions. Consider ALL options available along with opinion(S) from adept medical professionals ‘before’ making decisions as to how best to care for yourself.

Hope this helps.

Best wishes to you,
ladyk

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