Behcet's Disease Support Group
Behcet's disease (also known as Adamantiades-Behcet's disease), is a chronic condition due to disturbances in the body's immune system. This system, which normally protects the body against infections by producing controlled inflammation, becomes overactive and produces unpredictable outbreaks of exaggerated inflammation. This extra inflammation affects blood vessels.
Hello All,
Have not contributed for a while. My Mother died 2 weeks ago and funeral last week. Had knee surgery the day after Mums funeral.
Finally have a decision from ortho surgeon, he has recommended a tibial tuberosity until my knee degenerates enough to go to a knee replacement This is one big painful knee surgery, that will have to wait until l decide if l will consent. My daughter has this on both her knees and in her case it has helped, however her problem was knee dislocations. My problem is lateral tracking knee caps and damage form behcet,s disease from a very young age.
. He also recommends a lateral release, have had this on my left knee and found it to be of no use at all. In fact it made my left knee degenerate at an even greater rate. It was 6 months after the lateral release that l had the left knee replacement.
He has accepted the damage to both knees is both inflammitory and non inflammiitory in nature. A huge change in his opinion as he believed this disease had had no impact on these knees. He was wrong !!!
He has even said the rheumy can help me with the inflammation on my right knee. Previously his attitude to my rheumy has been less than positive.
I know not all of you have such extreme knee problems as l have had, but all thought and opinions welcomed as l contemplate what to do...
Thank you
lorna.k.c
Have not contributed for a while. My Mother died 2 weeks ago and funeral last week. Had knee surgery the day after Mums funeral.
Finally have a decision from ortho surgeon, he has recommended a tibial tuberosity until my knee degenerates enough to go to a knee replacement This is one big painful knee surgery, that will have to wait until l decide if l will consent. My daughter has this on both her knees and in her case it has helped, however her problem was knee dislocations. My problem is lateral tracking knee caps and damage form behcet,s disease from a very young age.
. He also recommends a lateral release, have had this on my left knee and found it to be of no use at all. In fact it made my left knee degenerate at an even greater rate. It was 6 months after the lateral release that l had the left knee replacement.
He has accepted the damage to both knees is both inflammitory and non inflammiitory in nature. A huge change in his opinion as he believed this disease had had no impact on these knees. He was wrong !!!
He has even said the rheumy can help me with the inflammation on my right knee. Previously his attitude to my rheumy has been less than positive.
I know not all of you have such extreme knee problems as l have had, but all thought and opinions welcomed as l contemplate what to do...
Thank you
lorna.k.c
I have neck and shoulder problems. My doctor said it would cause worse problems for my shoulder to do surgery and they are surprised by the type of shoulder problems I have because generally a football player gets this injury and I can tell you I never have played football.
We never discussed neck surgery even now, since I have blood clotting problems, Thrombosis. They will not even do injections in the facet joints. Dr, Yazici's book talks about what one must do prior to surgery to alleviate problems, It has been a long time since I read it and I cannot remember everything I read back then. Although,I think it should be something well researched before doing it and explore any other options available and how Behcets might relates to your condition.I think there might be others who have had surgeries and can share their experiences also.
I am very sorry to hear about the loss of your Mother and I have been told in the past when I have had an emotional trauma, to give it time prior to making this type of decision. Unless it is live threatening. Can you give it at least 3 to 6 months prior to deciding? Since I was always told after going through a major event in my life, which you have, that the Behcets flares and we should wait until things calm down physically, in order to make any decisions that really can affect our life or quality of life. Then one can discern how much Behcets is affecting ones condition.
If it is possible to give it some time, one might have an answer to what is the best thing in your life to do then. I will also read the information on surgery for you and pass on what information I have just give me a little time to do so as it is quite hectic right now for me. Also, check Joanne's blog "Essential Behcets" and type in Knee problems or whatever the actual DX is and the word Behcets and see if she has an articles in her Archive about Behcets and knees. Sometimes just typing in Behcets and Knees will pull up any studies or information on if Behcets affects the knees and what the studies have found to be a solution.
I wish you the best and pray you can still find joy and have a Happy Holiday Season with everything going on. Good Luck! I will write more later after I read on surgery and I hope you can find information on Joanne's Blog.
Hugs from Arizona
Have already spoken to my physio and he agrees with me that this is a last resort and in both our opinon's feel that it is only a stop gap to prolong whatever good parts are left in this right knee. It is also a very old fashioned type of operation and many ortho's no longer even do this operation. I feel it a great deal of pain and recovery as the quads will go to sleep after this surgery. Already had this happen after knee replacement and it is a very hard slog to get those quads back in operation. They also went back to sleep after getting so sick when i had my severe flare last Feb and again had to get those quads to work again The lack of exercise and extremely high doses of prednisolone made me loose all muscle tone in quads for a second time.
This is not a place l want to go back to again.
So at the moment will not consent to this operation, however may think about lateral release if all other options do not help.
My physio is going to start giving me hip exercised to strengthen all other areas around knees to help with degeneration of knees.He feels l am not walking in the same fashion as all others without knee problems. When one part of your body no longer works or is too painful to use you really do begin compensating and finding alternatives as l have. I used to walk with a rocking motion on my left side before knee replacement and can now walk without this as pain is gone. Had to do gait training for this to happen.
To answer your question the surgery l had was just a clean up behind knee cap to see how much damage there is, and a biopsy of the synovial fluid to see how much inflammation. Too little too late for the biopsy as now the inflammation is under control due to taking methtrexate and low dose prednisone. He also wanted to do lateral release at the same time , however l chose not to consent to this one. and he was not happy....... Had one very unhaapy orhtho that day and he left me very bruised and battered as l told this GOD in the medical field who knows all what to do. How dare l question this GOD.. Bad me. Lol
Will not be making any definite decisions for at least six months and will continue with exercises the physio give to me and hope the current drugs l am on continue to give me relief from inflammation for a very long time.Despite some of the side effects of the metho l feel very well apart from the broken heart of loosing my Mum. This will take a much longer time to heal.
Hope everyone has a very happy christmas and new year and take care.
Lorna.k.c
I am thinking of you and I am proud of you for deciding yourself on your decision because of what you shared and you know your body!.You are right, some Doc's do think they should never be questioned..I will read on it as I can. I hope you can find more info about Behcets, your knee and the latest surgery options. I have a brace I wear from my foot up to my knee for my gait. It was custom made, my Neurologist noticed I have a left foot drop and the brace take away so much pain and stops damage from happening. Good Job, Lorna.
Sorry about the holidays without your Mom. I wish there was perfect words to say to you, but I doubt there is. Know many of us are thinking of you,
Keep your faith and stay strong!
Hugs from ARIZONA.