My Life Changing Kienbock Disease
Donation protected
My life is going to be changed forever.
Where your kindness will be going...
- Stricting living expenses due to surgery being moved up... please see updates area for explaination.
I had NO IDEA how serious and life changing this disease is... not COULD BE... but actually is... until... today.
One of my subscribers on YouTube sent me a video of a woman who had just gone through surgery for Kienboch. Hers was a different surgery than what was suggested to me because of how far along her lunate was destroyed in her wrist. It was not her experience that made me realize how serious it was... it was what she was reiterating from what the doctors who specialize in this disease were saying. This is a life long disease that will just get worse over time. Depending on the person, if you are lucky... you will just have limited mobility after surgery (or many surgeries)... which I already have limited mobility NOW... if you are not so lucky... your wrist could end up being fused and rendered almost useless. Thus, this is something that CANNOT be ignored.
After what I heard her reiterate from these doctors, I have decided this is NOT something to experiment with... as it seems that all of these surgeries are literally just "hopeful" type, not the end all fix, as there is none... I am going to try to get into the Mayo Clinic in Phoenix as soon as I can to see a TRUE specialist that literally specializes in Kienbock. I am currently located in MO.
Backstory:
In March of 2017 I started having issues with my right wrist after a minor popping sound happened while driving. No accidents. No recent injuries. Nothing. I immediately had a small swollen area on the top of my wrist. Nothing major but it is still there today. The pain would flare up on and off but never completely went away. I ended up buying a brace, took anti-inflammatory over the counter medications; figuring it would take care of itself.
In June 2017 I started to have a consistent dull sharp pain, an odd pain that I had never really felt before. I finally decided to go to an Urgent Care just to get an X-Ray... they found nothing abnormal and simply said that it is probably carpal tunnel - to follow up with a primary care. My biggest concern was that I possibly had a break or fracture and since that was not the case... I went along with my life and never followed up with anyone. Mainly because, as before, the pain subsided a day or two later. However, the pain continuously came and went. As time passed it was starting to get more intense.
In Sept 2017, I woke up in excruciating pain and my wrist was frozen in place. I tried heat and ice - which both caused it to be even more painful. The oddest thing, as I have played sports my entire life and minor injuries were not new to me. I ended up in the ER later in the day. Given the same diagnosis - even though my symptoms did not even match the condition - of carpal tunnel. Given some pain medication and discharged with a list of Orthopedic Surgeons. I did follow up this time... 3 weeks later, I sat in an office for 2 hours just to see a surgeon who said... "Well, I specialize more with knees than wrists." Even though he was listed as someone who dealt with hands. So I was given yet ANOTHER list of Orthopedic Surgeons...
So basically, everything up to this point was money flushed down the toilet. Money I did not have to flush. So... after all those wonderful experiences, I yet again, decided to wait it out.
In Feb 2018, almost a year later, the pain and swelling was still there. Some days so excruciating that I was unable to do ANYTHING. I finally broke down and made yet another appointment with an Orthopedic Surgeon who specialized in hands. This time, he actually matched his description. He took X-Rays, did not want to be definitive but said it could be something called Kienbock Disease. A VERY RARE condition. So he ordered an MRI - did a follow up and sure enough, he was right. To be honest, with doctors these days, I was rather impressed that he had the right diagnosis before the MRI... I digress. He suggested a Radial Shortening surgery in my arm. I own a business that I use my hands for entirely and this was busy season... so I said I would have to push it out to at least July. Not much else was said other than a follow up appointment made for June.
I will keep everyone up to date here as things progress...
My husband and I (including the doggies) could not be grateful enough for your help.
Where your kindness will be going...
- Stricting living expenses due to surgery being moved up... please see updates area for explaination.
I had NO IDEA how serious and life changing this disease is... not COULD BE... but actually is... until... today.
One of my subscribers on YouTube sent me a video of a woman who had just gone through surgery for Kienboch. Hers was a different surgery than what was suggested to me because of how far along her lunate was destroyed in her wrist. It was not her experience that made me realize how serious it was... it was what she was reiterating from what the doctors who specialize in this disease were saying. This is a life long disease that will just get worse over time. Depending on the person, if you are lucky... you will just have limited mobility after surgery (or many surgeries)... which I already have limited mobility NOW... if you are not so lucky... your wrist could end up being fused and rendered almost useless. Thus, this is something that CANNOT be ignored.
After what I heard her reiterate from these doctors, I have decided this is NOT something to experiment with... as it seems that all of these surgeries are literally just "hopeful" type, not the end all fix, as there is none... I am going to try to get into the Mayo Clinic in Phoenix as soon as I can to see a TRUE specialist that literally specializes in Kienbock. I am currently located in MO.
Backstory:
In March of 2017 I started having issues with my right wrist after a minor popping sound happened while driving. No accidents. No recent injuries. Nothing. I immediately had a small swollen area on the top of my wrist. Nothing major but it is still there today. The pain would flare up on and off but never completely went away. I ended up buying a brace, took anti-inflammatory over the counter medications; figuring it would take care of itself.
In June 2017 I started to have a consistent dull sharp pain, an odd pain that I had never really felt before. I finally decided to go to an Urgent Care just to get an X-Ray... they found nothing abnormal and simply said that it is probably carpal tunnel - to follow up with a primary care. My biggest concern was that I possibly had a break or fracture and since that was not the case... I went along with my life and never followed up with anyone. Mainly because, as before, the pain subsided a day or two later. However, the pain continuously came and went. As time passed it was starting to get more intense.
In Sept 2017, I woke up in excruciating pain and my wrist was frozen in place. I tried heat and ice - which both caused it to be even more painful. The oddest thing, as I have played sports my entire life and minor injuries were not new to me. I ended up in the ER later in the day. Given the same diagnosis - even though my symptoms did not even match the condition - of carpal tunnel. Given some pain medication and discharged with a list of Orthopedic Surgeons. I did follow up this time... 3 weeks later, I sat in an office for 2 hours just to see a surgeon who said... "Well, I specialize more with knees than wrists." Even though he was listed as someone who dealt with hands. So I was given yet ANOTHER list of Orthopedic Surgeons...
So basically, everything up to this point was money flushed down the toilet. Money I did not have to flush. So... after all those wonderful experiences, I yet again, decided to wait it out.
In Feb 2018, almost a year later, the pain and swelling was still there. Some days so excruciating that I was unable to do ANYTHING. I finally broke down and made yet another appointment with an Orthopedic Surgeon who specialized in hands. This time, he actually matched his description. He took X-Rays, did not want to be definitive but said it could be something called Kienbock Disease. A VERY RARE condition. So he ordered an MRI - did a follow up and sure enough, he was right. To be honest, with doctors these days, I was rather impressed that he had the right diagnosis before the MRI... I digress. He suggested a Radial Shortening surgery in my arm. I own a business that I use my hands for entirely and this was busy season... so I said I would have to push it out to at least July. Not much else was said other than a follow up appointment made for June.
I will keep everyone up to date here as things progress...
My husband and I (including the doggies) could not be grateful enough for your help.
Organizer
Rachel RURdy4It
Organizer
St Louis, MO
