Anyone out there with KD ever had a knee or hip replacement after having been diagnosed with KD? If so, were you able to fully recover from the surgery? I am dealing with osteoarthritis under both kneecaps as well as an arthritic hip. My neurologist has said no way to knee replacements unless absolutely necessary. Not sure regarding a hip replacement. As you can imagine, dealing with KD on top of this hasn't been good for mobility.
I have not heard of anyone with KD having either replacement you mentioned. I encourage you to ask the question on the KD patient groups on Facebook, as you may reach a wider group there.
Obviously a major factor is, what stage of KD have you reached, and are you still ambulatory or not?
Keeping in mind the rarity of KD, and the fact that many neurologists rarely or never see a patient with it, I'd want to ask:
1. Why specifically are you warning me against a replacement? What specific negative outcomes are you concerned about?, and
2. How many patients with KD have you personally seen who had a replacement, and what issues did they have afterwards?
Your doctor owes you advice based on specific facts and experience, rather than a general idea not backed up by any facts.
Location: Chicago, IL
Dan has good points, especially his suggestion to post your question on one or more of the KD facebook pages. I prefer forums like this with categories and topic listings versus facebook but there are a lot more members in those groups increasing your odds for relevant responses.
I haven't had a surgery as major as a hip or knee replacement but I had a double inguinal hernia and a deviated septum fixed each while put asleep under general anesthetics at the University of Chicago Hospital. My neurologist spoke with the anesthesiologists to insure they had a good understanding of my condition and likely complications and each surgery went well. I consider those surgeries the most beneficial healthcare services I've received. My biggest concern for a surgery such as a knee or hip replacement would be the recovery process. I don't know to what degree ones mobility is limited after joint replacements and for how long but I know how fast I lose muscle after injuries that limit exercise and the amount of effort and time it takes me to rebuild lost muscle. I'd also be concerned if a replacement is likely to wear out before my expiration date.
I don't think I have arthritis but I have struggled with numerous joint injuries. Most were self inflicted due to weakness, clumsiness and poor judgement. But in hindsight some other health issues such as becoming prediabetic, lead poisoning and nutritional deficiencies also contributed. Since recognizing and addressing those health issues I am doing better, no new injuries in the past year and my old ones are bothering me less. I'm still prone to excessive confidence and poor judgement but I think my joints are slowly healing and as I have been regaining muscle mass and my nerves and muscles are working better I'm having an easier time avoiding reinjury.
Here's another thing to check out. At the 28:50 mark on this video, there is an interview with a person who has MS, and also had a hip replacement and a knee replacement. In the video he is talking about learning how to ride an e-bike.
Of course, MS is not the same as KD, so your results may be very different. Nevertheless, it shows what can be accomplished by a determined person with appropriate physical therapy.
Location: Vancouver Canada
Hi Jon I've had Kennedy's for 20 years. I broke both hips last year in falls. One in June the other in November. Had pins put in both have recovered fully and my rehab lead to a successful weight lifting program. I weight lift 4 times a week. I also do cardio 4 times a week. I've gone from 137lbs. to 150lbs in one year. I am walking about 12kms a week. I use a walker for safety. I have a very strict mostly vegan diet. I take calcium, creatine and protein supplements. Exercise and diet has been key to keeping me going.
Location: Chicago, IL
Robert, excellent to hear you have bounced back from breaking both hips and now have a vigorous exercise program. Have you considered vitamins D and K2 as well. If one is deficient in D calcium absorption can be impaired. K2 is supposed to improve calcium uptake in bones.
I've been getting consumer non-medical dexa scans several times yearly for about 5 years to track body composition to help me judge how various approaches to diet and exercise are working for me. In addition to reporting muscle mass and fat mass throughout the body they also report bone mass and density. The past couple of years I was alarmed by accelerating bone loss but my last report was much better. I'll need to see another good report or two though before I'll be truly confident I've got the issue fully sorted out.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614