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total femur replacement

snoonie68
Posts: 3
Joined: Jun 2004

My husband is 38 and was diagnosed with osteosarcoma in May. He is set to have a total femur replacement (knee, femur, hip) in August. Is there any one out there that has had this surgery with success?

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rwebb
Posts: 7
Joined: Mar 2002

Hi snoonie, sorry to hear about your husband. I had partial femur replacement and chemo 3 years ago with success - no sign of recurrance since then. I was 33 at the time. If you have more questions I would be more than glad to share what I know. Post here or email me at rwebb3@yahoo.com

prettycece
Posts: 2
Joined: Mar 2004

Hi, Just found this message board, I hope his surgery went ok...I also had a partial femur replaced 20 months ago and walking fine. You can e-mail me at cmperron@msn.com

sandahbeth
Posts: 2
Joined: Jun 2005

Hi. I'm Sandahbeth. I need to know about total femur replacements. What level of pain? How many surgeries? What kind of heal problems and time? What kinds of complications?

osteosarcomasd
Posts: 1
Joined: Jun 2005

i have just had a total femur replacement. i had a reoccurance after 16 years. my surgery 16 years ago was a limb salvage surgery. in april, they found a soft tissue mass which has osteosarcoma origins. please provide me with your email address and i will give you more info. thanks!

AuthorUnknown
Posts: 1564
Joined: May 2006

hi: My son just had a total femur, knee and partial tibial replacement. His surgery took 3-4 hours, 58 staples and he was out of bed in two days. He was partial weight bearing in four and it has been two weeks and he can stand, walk a short distance with 70% weight bearing. He said that he had more pain from the osteosarcoma tumor than the surgery. You can see his surgery photos at www.caringbridge.org/visit/zackstuck. Go to the links page then to the community photo web link.

JojoB
Posts: 1
Joined: Jul 2014

i just found this site. I'm 58 and had a distal femur replacement and total knee in 1993 for Osteosarcoma. my tumor did not respond to chemo. I have not had a recurrence - knock on wood.  My steel stem broke in 2012 and I had a revision.  I was walking and returned to work in five weeks, however I developed deep bone pain after 3 months and after multiple tests my MD said it was nerve pain. Put me on Neurontin and Vicodin. I took myself off of the Neurontin due to side effects. I just dealt with my pain and when I couldn't walk much jumped on a bike. I use to walk 4 miles a day. So big change in my activity level. My insurance changed so I couldn't go back to my surgeon (which was a blessing). I went to UCLA - Dr. Susan Bukata - and she diagnosed me with Aseptic Osteolysis which cause my endoprosthetic to be loose (my pain). Needed revision again but felt that there wouldn't be enough bone left for a successful revision and opt for total femur replacement. I'm almost 12 weeks out And just got the okay to use a cane but PT guy think I'm too weak for it so I'm using one cane. At home I walk but fatigue easily. I'm taking half a Vicodin tab every four oy five hours. I finally can swim with fins. I can only sleep on my back and my adjustable bed has been a godsend. This is a much bigger surgery and rehab than my previous surgeries but I'm getting stronger. I joke that I am half-assed but I truly am. Someone let the air out of my right cheek. my abductors have atrophied and that isn't just from surgery - it's been going on since my pain started. I'm so glad my insurance was changed because I would have just sucked it up and carried on until I couldn't walk or my leg broke from the osteolysiS because I felt so fortunate to be alive and didn't want to whine about my pain. so that's my story.  if I can answer anyone's questions - feel free to email me. Jojobryan@cox.net. 

Always take someone with you to your appts to take notes  

 

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annielively
Posts: 1
Joined: Jan 2011

I'd also like the details. There are no good resources on total femur replacements online. The last thing I found was a paper from 2005, surely things have advanced since then? Here's the link to the article I found http://www.ncbi.nlm.nih.gov/iaqsource/nih.gov/

lacoder
Posts: 2
Joined: Jul 2004

My fiance' who's 33 had a partial femur and complete knee replacement a little over a year ago. The surgery went great and he's able to walk with a barely noticeable limp. He's currently undergoing chemotherapy for nodules that showed up on his lungs back in January. Good luck with the surgery and recovery.

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char1970
Posts: 18
Joined: Apr 2004

hey snoonie, sorry to hear about your hubby. i was dx'd 5/1996 and have been cancer free for almost 8 yrs. i had my patella and part of femur replaced and a TKR. if you'd like to chat you can email me at char1970@nycap.rr.com. wishing you both the best.

ira
Posts: 4
Joined: Feb 2005

Hi,
I love to hear the stories of success, like anyone else who were diagnosed ever with cancer. I was diagnosed myself a year ago with bone lymphoma noh-hutch. I'd like to know more about femor replacement or in my case shoulder replacement surgery. Do you know where I can get it. Would share some of your experience. I noticed from your username year 1970, if you were born that year, we are exatly the same age. I'd like to know how you are doing right now?
Thank you an advance.
Irina

lilsweetiepie
Posts: 3
Joined: Jul 2004

Hi I am 14 and was diagnosed with bone cancer in my femur in June 2003. In December of 2003 I got a total femur replacement (femur, knee, hip) I was the second or third perosn in the U.S. to get the total femur replacement with a specific prosethesis. I was scared because what a big surgery it is and my surgeon had never performed that specific surgery before. It is November now, I started out after surgery on crutches, 6 weeks after putting little weight down still with 2 crutches though. In mid Feburary-mid April I was walking with one crutch. Then I started walking with cane from end of April to end of June and then starting walking with nothing. The chemo can slow you down. I saw a physical therapist three times a week for an hour a day for 6 months and then started going down to 2 days a week and now I just go onece a month. I can walk on my own now, I have a very small limp, and trying to learn how to jog. I have restrictions but I am so happy to have my leg. From personal experience if your doctor says you need it I would recommend it, but still be aware of the dangers.

safaritan
Posts: 1
Joined: Apr 2006

Please tell the name of the doctor & hospital where this was performed. Trying to find a solution for my 11 year old daughter w bone disease. thank you.

raybone
Posts: 5
Joined: Jan 2010

I had cancer in my femur. 2 rods were put in my femur , after the second one failed I had this operation on July 2,2009, I have had some therapy and seem to be cancer free at present. My knee still only works up to a certain point, I am very pleased with the operation. I would like to contact someone else that has had this procedure as I have a few questions concerning the operation. My femur knee hip are stainless steel I am 62 yrs. old. I will gladly answer questions and feel free to contact me......As another has mentioned, I am so glad to have my leg, even tho limited motion. my email is randlhagan@gmail.com I walk with a cane and get around fairly good. Anyone with anything like this and has pain I would like to talk to as to how much pain you have and other issues .

sterneyland
Posts: 5
Joined: Apr 2010

I am 71. I had kidney cancer in 1991. The kidney was removed and I had no further trouble until 3 years ago a tumour was discovered in my thigh which was treated by radiotherapy. This was not successful and a rod was fitted as the tumour eventually destroyed most of the bone.This was not a success and the tumour continued to destroy the bone. I had just started a course of Sutent in December when I discovered the possibility of a replacement femur which is a very rare procedure in UK. There are one or two other possible metastases elsewhere which are apparently inactve.

In January 2010 I had a total replacement femur inc hip and hinged knee. I am still recovering. I understand that the difficulty is that the muscle cannot be attached to the steel femur and a lengthy period of physio and general recovery is required. There is a certain amount of pain but insufficient to require painkillers. I am wondering how long it is before it is "as good as it gets".

I realise these are early days. The leg feels unstable and at the moment I cannot lift it but can bend it.

I seem to be proceeding along the same course as yourself and would be interested to hear your experience. You are a little further on. I understand that I will be quite mobile eventually but may need a stick to balance. How long is "eventually"?

DINOSAUR40
Posts: 2
Joined: Oct 2010

I see April was your last posting and was wondering how you are doing with your rehab.
I am 70, was diagnosed with kidney cancer in 1991, lost one kidney and was treated with InterluekenII. Had thoracic surgery in 1999 to remove tumors from chest, and was diagnosed with tumors in the other kidney in 2003. Had 5 radio frequency ablations from 2003 to 2005, and a rod was inserted in my left femur in 2008.In August I had my other kidney removed and am on dialysis. It is now being recommended I have a total femur replacement as the tumor is progressing in the bone. My situation appears to be extremely similar to yours and I would love to hear how you are progressing and any information that may be helpful.

sterneyland
Posts: 5
Joined: Apr 2010

I am sorry I have only now seen your message as I lost interest in the site as I received no reply from another patient.
I can recommend the procedure which by now you will have had. It takes time to become reasonably active but I was able this summer to sail on a yacht again. If you are still interested please email me on this site. Good luck. Sterneyland

sterneyland
Posts: 5
Joined: Apr 2010

I posted a comment some time ago. How are you progessing? My email is bewalton@btinternet.com.uk

sterneyland
Posts: 5
Joined: Apr 2010

I am unable to e-mail you as the address randlhagan.gmail keeps coming up as non-existent. I have posted on CSN as sterneyland.

tfielder
Posts: 1
Joined: Mar 2006

Could you give me information about the hospital where this procedure was performed and who the doctor was. I am searching for options. I had synovial sarcoma in 2000, it was in my right hip. I have had my hip replaced and it dislocates and is weak, I walk with a crutch. I am pregnant with my second child and want to do something with my leg after the baby is born. Any information would be helpful. Thank you so much... tfielder

IceQueen
Posts: 1
Joined: Jun 2006

Hi
I'm so sorry to hear of your husband's diagnosis.
I was diagnosed with osteosarcoma the month before my 21st birthday - I was given chemotherapy and limb salvage operation (femur/knee/partial tib replacement). The operation was successful and I was walking around without crutches within 2 months. This was 10 years ago and I've had no recurrences. In fact I've just had my annual check-up and all is looking good. Obviously I have limited movement in my knee and can only bend it around 90degrees and I'm constantly "aware" that it's there, but I now run, climb rocks and parapent for fun.
I'm sure everything seems very bleak at the moment, but I'm living proof that people can survive this type of cancer and the operation that goes with it, and lead a "normal" life. I say "normal" because most people I know don't consider my rock climbing and throwing myself off mountains for fun "normal". I'd be more than happy to answer any questions about my surgery/chemo you or your husband may have and in the meantime I send my best regards to you and your family in what I know from first hand experience to be an awful awful time.

raybone
Posts: 5
Joined: Jan 2010

hello I had alot of the same experiences as you. I had my surgery in July 2,2009. Everything has went pretty good. I am just concerned about the pain level that I have. I just take what is needed but that still amounts to more than some might think thatI need. reply would be appreciated

randlhagan@gmail.com

MI2011
Posts: 1
Joined: Nov 2011

i had 12 surgeries on my knee and femur , and there is always pain but Advil has helped me. I had a total knee and I had my last surgery at Beaumont Hospital in Mi and it was very painful for the first six months but got better. The total knee femur seems to hurt with the weather. I have found that if you have a lot of pain or your leg gets hot, feels loose or moves a little, then you may need a component fixed. My first surgery was when I was 17 yrs old and I had it at Massachusetts General Hospital under Dr. Mankin the inventor of using another person's femur knee, I had two failures, so I went to the best Hospital where my doctors who tried there at Mayo Clinic (Mayo Medical Center Rochester, MN) Dr. Sim and I had metal used. I had a break in 2008, 10years after the surgery, and I was having a deep pain in my femur area a few days prior to the break, I have been told many people who have a failure feel that same deep pain. Dr. Les of Beaumont Hospital - ROYAL Oak, MI was the Americans Best Doctors listed Cancer/ Orthopedic Surgeon , I have had no problems now three years later.

I had allot of surgeries because I went to the Best Doctors and Hospitals, but because of my age I tired many methods to save my leg, which they did. I also had lots of failures, but not since having Dr.Les surgery, I did have Dr. Irwin of Beaumont Hospital prior to Dr. Les and he never performed any of my complex surgeries he had Dr. Les treatment. Now 20 years into this, you get used to the pains, but you always watch out for them as well. Even people for lose a limb have pain

So this should answer questions with pain, surgery, Doctors, Hospitals, if you have any more questions let me know. Dr. Mankin did retie, but he still is doing research.

U of M Hospital also has a good Doctor, Dr.Beirman but, I went to the best , like everyone says, I researched all the hospitals, and doctors that are dealing with bone cancer , and limb salvage. I had been doing research for 20 years, and my leg feel great,

There is a long list of very good Hospitals and Doctors, but you have to like the doctor, don't be forced into surgery, talk to other doctors, and get the best, as its your life and body. The big C word is very stressful, I was told I had to have my leg amputated by three doctors, until I went to the best. One of the three doctors said I could hit him if he was wrong about me having to lose a limb, I called him the next day after my surgery 20 years ago, to see if he was going to keep his word of being wrong.

laslater
Posts: 1
Joined: Jul 2012

I have over ten surgeries on my knee and femur. I developed staph after my first knee replacement. After three unsuccessful posts in the femur, my doctor is thinking total knee replacement. I am 65 and find it difficult to walk. Anuy doctors do this replacement on a regular basis.

My orthopedist is one of the best but has only done this four times in his long career.

Carynhip
Posts: 1
Joined: Mar 2013

Hi

 

I saw your post and wanted to aske your advice -

 

My situation is very different in that I fortunately do not have cancer - however , I stumbled upone this website dearching hip/femur replacemets. I had a dyslocated hip as a child and it went un diagnosed until it was too late and they had to operated and pin and plate it etc. I have been extremely lucky in that I have walked and lead an active lifestyle. However, I have a large leg length difference and a very bent femur. It has caused me a lot of low back pain and neck issues. Slipped discs and nerve traps etc. 

 

I am now trying to figure out how to go about replacing the hip and femur to straghten me up - I'm 32 and I know that it can only be worse as the years go by in terms of my discomfort.

 

How was it replacing the hip and femur? I have a feeling my hip surgen who I am due to see will tell me the surgery is extremely drastic and not worth it until I am in complete agony on a daily basis. However, I would really like to know how realistic it is to have a better life with the surgery. If it wasn't for the bent femur they could just replace the hip - but replacing the hip as I am now won't solve any issues in terms of my walking pattern and leg length problems. my pelvis twists rather a lot when I walk - it's compressing a lot of nerves which will not be eased until the joints can be leved out and stabalised.

 

I hope you don't mind me asking you - it sounds like you have been really brave - and I respect your postive attitude. I would love to run without pain some day - or even ski

What do you think????

 

Many thanks

 

Caryn

stressedspouse
Posts: 3
Joined: May 2012

MI2011
Did you locate any doctors in Pennsylvania, New Jersey, or Florida?

stressedspouse
Posts: 3
Joined: May 2012

MI2011
Did you locate any doctors in Pennsylvania, New Jersey, or Florida?

Sallyd
Posts: 1
Joined: Jun 2012

stressedspouse,
I live near Pittsburgh PA and know a doctor that does femur replacement. If you'd like info let me know. I had hip/femur/knee/partial tibia replaced Dec 2011.

Hiness58
Posts: 1
Joined: Jul 2012

Hi, my sister in law is getting ready to have surgery next Friday at Duke university. She isn't one to get online and do research, but I am. I wondered how the surgeries are going since it's 2012? And how everyone is still doing? I'm sure they've made strides in the past few years. Would love to know how everyone is doing!

sterneyland
Posts: 5
Joined: Apr 2010

Have a look at my comments under Sterneyland about the operation and recovery period. I recommend the operation and my leg is still Ok and no pain. Occasionally stiff if I have been lying at night in an odd position. I use a stick in case I overbalance as it is not possible for me to put weight on the leg when it is bent. Consequently I have to walk upstairs one step at a time. Having the operation is much better than having no leg! Good luck to sis-in-law.

pennyahlquist
Posts: 2
Joined: Feb 2013

Hello, I am very interested in learning more about this procedure and can't seem to find a lot of information on line. My freinds son has bone cancer and would like an alternative to amputation from the knee down. Any information or web sites you can send me would be a great help.

Thank you so much,

Penny

pennyahlquist
Posts: 2
Joined: Feb 2013

Hello, I am very interested in learning more about this procedure and can't seem to find a lot of information on line. My freinds son has bone cancer and would like an alternative to amputation from the knee down. Any information or web sites you can send me would be a great help.

Thank you so much,

Penny

jchoward55
Posts: 1
Joined: Feb 2013

Penny,

I had a femur replacement in Oct 2012.  I am still working on recovering.  Did you find the information you needed?

 

Judy

 

Remi ro
Posts: 1
Joined: Jun 2014

I had his surgery 9 years ago.  

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