I was diagnosed with Bone cancer (Chondrosarcoma) in the Acetabulum in Dec'2010. Underwent a hemi-pelvictomy in Jan'2011 and my hip joint was replaced with a Titanium implant. My recovery was slow and I ended up using the walker for approximately 4 months, after which I was able to walk with a cane and a limp, as my leg was about 1" shorter then the other. In August, there was fluid accumalation at the surgical site and I underwent a wound-wash followed by IV antibiotics for 3 weeks. As soon as the anitbiotics were stopped, fluid accumalation began again. So another wound wash in September and another one in October. They finally figured out that is was a Fungal infection and not a bacterial one. I was on IV anti fungals for 8 weeks and after that oral anti fungals for 2 years. A few weeks after the antifungal was stopped, I began to have fever and cough. Diagnosed as TB caused due to low immunity casuded by the anti-fungals. Was on TB medication for 9 months and declared cured. In October 2014, i suddenly could not walk... one day i was walking with a limp, and the next I couldnt walk a step without the cane or walker. It has slowly deteriorated since then. I cannot walk without a walker...even the cane is very painful. Then started the neurological pain.. burning up my leg with every tiny movement..unbearable. Started on new medication.. still on it. Nerve pain is better, but the joint hurts like hell every time i try to put weight on that leg. they tell me I am overweight and that is causing the impalnt to loosen and that the only option is to remove the implant. scared as hell and worried as to how life is going to be from here on. exhausted with being sick for over 4 years. painkillers are making me brain dead...CAN SOMEONE PLEASE GIVE ME SOME ADVICE...
I think at your stage of illness I would be seeking a naturopath alternative who can just as easily be gp trained. As soon as I read anti fungal I thought uh oh. There are many non prescriptive natural powerful anti fungals. Maybe conventional medicine has worn your body out and your systems have almost given up. it is usually at this stage that people look for other help when the medics can offer you nothing more. Now you have to be active in looking for some other way. Have you posted on the alternative medicine site on here. Take a look then research, particularly hydrogen peroxide therapy. Sometimes a last resort but a very effective one.
fekpla,
Your story is just overwhelming to me. I am very sorry to hear the challenges you are facing. The only thing I can suggest is that you seek the best of the best doctors and specialists if you haven't already. You didn't say what country you live in, but the internet is a powerful research tool. They are finding new ways to do things everyday. Places like Vanderbuilt and Duke and other university/hospitals may also be an option. I know you are exhausted, but just one decision, or one phone call could possibly be the answer you are looking for so don't give up. I will
be praying for you. Try to stay strong, just one day at a time.
Kathee (U.S.)
I'm so sorry that you have gone through so much and you still have a journey ahead of you.
Without knowing where you live it is hard to know what your health system offers (not that I'm an expert - I live in Canada)
But I do know it helps a great deal to have someone advocate with/for you, to go to appointments, schedule appointments and give you the emotional support you need right now.
If you do not have family/friends perhaps the Cancer society can offer some help in some way, at least drivers, support groups etc.
As for pain, until you sort things out with the specialist just insist that your gp at least give you something so you can have somewhat a quality of life, until things are sorted out..
Alternerative options are just that, options, but should not be overlooked. Some doctors welcome a balance between the two sciences, BUt don't hide anything from your gp/surgeon, as they MUST know what you are taking/doing at all times, so that if you end up in their care again, they know what medications are compatible with what you have been taking though your alternative doctor.
there seems to be no easy answer, but just know that there are people here who will listen to you whenever you need their support,
Patricia
Thank you Gentilleschi, Kathie and Patricia. I live in India, which brings in a lot of problems in itself. I was operated in one of the best surgical facilities in the country by THE best orthopedic oncologist in India.
Gentilleschi - naturopathy is what I am leaning towards too. I will check the sites/forums you suggested. Am in the process of enrolling myself for in-patient treatment at an Ayurvedic Treatment Facility. They will help me lose some weight, while giving me treatments for muscle strengthening and improving immunity. I am hoping that it will help. I am really scared about going in for another surgery and hope I can avoid it as far as possible.
Kathie, Patricia... although my immediate family is all in the USA, I am surrounded with friends who drop anything in a minute to be with me whenever, whereever i wish. But, after 4 years it has seems wrong to take advantage of their goodness. I am so glad to have found this forum. I have spent the last 4 yrs trying to keep a postive frame of mind and being brave and I feel I need to continue to do that for the sake of my husband and daughter...but there are days when I just want to curl up in bed and cry because I cannot take it anymore and somehow I cannot do that to them. they have no idea how much pain i acutally am in and how brain dead I feel.
please bear with me, if I seem to be venting too much of the time.
I'm so glad that you have someone at your side, but please believe me and put yourself in their shoes to see where they are coming from....they WANT to help you, they WANT to be there for you, and I'm sure you would do the same for them, so please take comfort from those who reach out to you...if you feel you are bothering them so much, then rotate your phone calls or requests for visits, but please do not cut yourself off from people.... and of course you always "have us"!!!!
Will be watching for your process.....and just another thing,sometimes when those we love are in pain, it is hard to reach out, have ther right words to say, know what to do, and many feel so helpless, so perhaps they do the wrong thing, say the wrong thing, so just know that they are there for you, faults and all,
Patricia from Toronto Canada
I have no advice to offer you BUT I can offer you prayers.... this is a GREAT site, folks are so supportive.... many folks have great ideas and others of us are great listeners
Fekpla,
The best of luck to you in your search for health. Please keep us informed of your progress. Just know that we are thinking of you.
Kathee
First of all fekpla, let me send you a hug. Secondly, my heart goes out to you. So sorry you have had to endure so much! So many complications and set backs and I understand that brain dead feeling from being on pain pills!
At this moment I cannot think of any advice because of your complexities, but I will read your post a few more times and maybe something will pop out at me.
For now, just know that you have come to the right place for encouragement and support. We care.
Hugs
💛 Dawn, USA