The past couple of weeks have been pretty rough. I pinched a nerve in my back/neck, so it's been back and forth to the chiropractor for that. Then I found out about a serious issue with not one, but both knees, and I've been all over the Bay Area for consults and care for that. The jaw/teeth woes continue, and now I just got dealt a blow by my lawyers saying that our expert witness has changed his tune and is now saying he can't really say that my care was below the standard of care. Wwwhhhaaatttt?? (PS-- yes, I have been working with a lawyer the last few months to talk about putting a case together against my surgeon and Kaiser. I have not mentioned it in the blog thus far since I didn't want to drag that part in here with the medical part, but I've decided to talk about it now.) I have no clue what sparked that change when he was so critical and adamant about everything being so shoddy and the lack of care (and quality care at that) that I got post op after my first surgery. I've had a few days to process it now, and I still can not fathom what happened for him to do a complete 180 with his opinion on my case. My lawyer is pretty confused and dissapointed too. I mean, if the care I got (especially post op when I needed it most and instead my surgeon ignored me, wouldn't grant me an appointment, and shoved me off to my orthodontist, and was never heard from again) is the standard of care, then I am not sure I could ever let another doctor touch me again for anything. I am sorry, but what was done to me is not only below the standard of care, but it's down right unethical and negligent. I would never in a million years treat somebody like that, and I wouldn't expect others to be treated like that. So, the reality of all of this is my case is probably dead in the water now. I have less than 60 days until my statute of limitations runs out in April. There is not enough time to get with another legal team and get an expert witness on board. It took so much out of me just getting the first case put together with the current team. Both emotionally and financially. I spent $2400 just to have the expert witness review my records and then pull a 180 on me. Now with the knee issues coming up unexpectedly, I need to reserve what I have left (both emotionally and financially) to deal with that. I'm almost at a point where I am ready to emotionally process what has happened here and try to find a way to deal with it and move on. I will need to find another way to get some closure about what happened to me since it won't come through giving my surgeon a wrist slap legally. Hopefully I can find some peace somehow. I am afraid that even if I do, I will never really have complete closure over it and it will be something I think about and bothers me, even if just a hint of it in the back of my mind, for the rest of my life.
Speaking of the knees, I got a 4th opinion. My husband forgot that he has an uncle that is a orthopedic surgeon (well, he didn't forget about his uncle, but he did forget that he was an ortho). So, we tapped him for his opinion. At first he didn't have any of my records and was just going off of hearing a few details from Matt. I emailed him and chatted a bit more and planned on sending my records that night. I would have to snail mail him the xrays since they are actual films and not digitals. I was so appreciative of him taking his time to look at all of this for me. I was able to quick send him the screen grab of the MRI that I posted from my last blog update. He responded immediately, and his tone changed drastically. I think he was thinking I was a simple case of malalignment and we were going to talk mostly PT and if anything a simple lateral release that is done. He even mentioned taking my time and I didn't have to feel rushed to get the surgery. I don't blame him for his initial response like that as 85% of patients who present with this problem are treated with conservative general treatment like that. His response now was grim. He said I didn't even need to send him the rest of the records, MRI, or xrays anymore. Just that one screen shot from the MRI tells it all. He said the amount of tilt and displacement of my patella isn't even severe, it's quite extreme. He's surprised I am still getting around as well as I am and not experiencing complete dislocations of my knee cap. He switched from being pretty casual and a 'no rush,' approach, to now more serious, suggesting I shouldn't put this off too long. Every day I am causing more and more damage on the cartilage rubbing together in the wrong spots, just from something as simple as walking and sitting at my desk with my knees bent 90 degree. He said without a doubt I would develop severe arthritis in the not too distant future if the problem isn't corrected. I believe him, because the pain I am in now is the first signs of my cartilage starting to wear through and hurt me, and it's only going to keep going downhill from here. He's pretty certain I am going to need the more invasive tibial tubercle osteotomy to fix this problem due to how severe it is. Sucks, because my shred of hope so far in all of this was that the doctor I am seeing in San Francisco does an all inside arthroscopic fix, but it's soft tissue only, which sometimes isn't enough when the malalignment is this far off. Could I go for the less invasive procedure first? Sure, but if it fails, then they are just going to have to open me up anyway, cut more tissue/muscle and cause more scar tissue issues, and do the tibial tubercle transfer anyway.
What's the worst that can happen? I could end up again on the other side of a surgery where it's gone completely wrong and I am left worse off and in deep regret. Or I could not do the surgery, let it go and within the next 3-5 years probably be in the same spot in terms of non-activity because the pain/instability has become that severe and keeps me from activity. So, I risk loosing the next 3-5 years (maybe 6-8 years at best if I had to guess) of doing all of my activities (with pain getting worse and worse as time goes on) vs. being restricted immediately if the surgery goes wrong like my jaw surgery did. Either way, I come out restricted. But, if the surgery turns out great for me, then that could buy me a life time of future activity on healthy cartilage and knee structure. On the downside, I end up in the same boat whether I do the surgery or not. So, why not do the surgery and at least have a chance at this being great for me? It's like the only thing I have to lose trying is those couple of years where I would have been active still had I not done the surgery. I think that is a fair gamble and the risk of losing those few years is worth the reward of a lifetime of better knees that will allow me stay active.
I don't want to feel like I am in a position to be forced in to surgery "or else." In this case it's or else my cartilage gets worn down to bone and I end up with severe arthritis. It was similar "or elses" for my jaw surgery. So, if I have to take the risk, then at least I've learned some things through my botched jaw surgery experience to hopefully minimize those risks and give me the best options. I already sought out not only orthopedic surgeons, but ones that are patellafemoral specialists. They are hard to come by. Luckily it seems I found a good one in San Fran. The more invasive procedure I would need is called a Fulkerson osteotomy (the general procedure is a tibial tubercle osteotomy or tibial tubercle transfer), named after the doctor that took the osteotomy precedure and perfected it to a point where that is how it's mostly done all over the world now. So.... why not go see Dr. Fulkerson? He's in CT, a 3 hour drive from my parents place in NJ. He's rated in the top 1% of all US orthopedic surgeons, and he's founder of the patellafemoral specialist group. It's only a handful of doctors, and luckily for me I found out my doctor I am seeing in San Fran is on it! SWEET! So, I am going to go out and go straight to the source for a consult. I don't mess around now. ha! Hopefully the doctor here in SF will want to work with me on that and not be too put off that I would want to go see another doc for the procedure and then come back here to continue follow ups and therapy/recovery with him.
Definitely a lot to chew over here. I am going to try really hard to not turn this jaw blog in to a knee blog, but obviously it's going to come up. Hopefully I can get the knee issue taken care of in the coming months and be mostly healed by the end of the year so I can then shift focus back to going in to the revision surgery for my jaw.
Speaking of the knees, I got a 4th opinion. My husband forgot that he has an uncle that is a orthopedic surgeon (well, he didn't forget about his uncle, but he did forget that he was an ortho). So, we tapped him for his opinion. At first he didn't have any of my records and was just going off of hearing a few details from Matt. I emailed him and chatted a bit more and planned on sending my records that night. I would have to snail mail him the xrays since they are actual films and not digitals. I was so appreciative of him taking his time to look at all of this for me. I was able to quick send him the screen grab of the MRI that I posted from my last blog update. He responded immediately, and his tone changed drastically. I think he was thinking I was a simple case of malalignment and we were going to talk mostly PT and if anything a simple lateral release that is done. He even mentioned taking my time and I didn't have to feel rushed to get the surgery. I don't blame him for his initial response like that as 85% of patients who present with this problem are treated with conservative general treatment like that. His response now was grim. He said I didn't even need to send him the rest of the records, MRI, or xrays anymore. Just that one screen shot from the MRI tells it all. He said the amount of tilt and displacement of my patella isn't even severe, it's quite extreme. He's surprised I am still getting around as well as I am and not experiencing complete dislocations of my knee cap. He switched from being pretty casual and a 'no rush,' approach, to now more serious, suggesting I shouldn't put this off too long. Every day I am causing more and more damage on the cartilage rubbing together in the wrong spots, just from something as simple as walking and sitting at my desk with my knees bent 90 degree. He said without a doubt I would develop severe arthritis in the not too distant future if the problem isn't corrected. I believe him, because the pain I am in now is the first signs of my cartilage starting to wear through and hurt me, and it's only going to keep going downhill from here. He's pretty certain I am going to need the more invasive tibial tubercle osteotomy to fix this problem due to how severe it is. Sucks, because my shred of hope so far in all of this was that the doctor I am seeing in San Francisco does an all inside arthroscopic fix, but it's soft tissue only, which sometimes isn't enough when the malalignment is this far off. Could I go for the less invasive procedure first? Sure, but if it fails, then they are just going to have to open me up anyway, cut more tissue/muscle and cause more scar tissue issues, and do the tibial tubercle transfer anyway.
What's the worst that can happen? I could end up again on the other side of a surgery where it's gone completely wrong and I am left worse off and in deep regret. Or I could not do the surgery, let it go and within the next 3-5 years probably be in the same spot in terms of non-activity because the pain/instability has become that severe and keeps me from activity. So, I risk loosing the next 3-5 years (maybe 6-8 years at best if I had to guess) of doing all of my activities (with pain getting worse and worse as time goes on) vs. being restricted immediately if the surgery goes wrong like my jaw surgery did. Either way, I come out restricted. But, if the surgery turns out great for me, then that could buy me a life time of future activity on healthy cartilage and knee structure. On the downside, I end up in the same boat whether I do the surgery or not. So, why not do the surgery and at least have a chance at this being great for me? It's like the only thing I have to lose trying is those couple of years where I would have been active still had I not done the surgery. I think that is a fair gamble and the risk of losing those few years is worth the reward of a lifetime of better knees that will allow me stay active.
I don't want to feel like I am in a position to be forced in to surgery "or else." In this case it's or else my cartilage gets worn down to bone and I end up with severe arthritis. It was similar "or elses" for my jaw surgery. So, if I have to take the risk, then at least I've learned some things through my botched jaw surgery experience to hopefully minimize those risks and give me the best options. I already sought out not only orthopedic surgeons, but ones that are patellafemoral specialists. They are hard to come by. Luckily it seems I found a good one in San Fran. The more invasive procedure I would need is called a Fulkerson osteotomy (the general procedure is a tibial tubercle osteotomy or tibial tubercle transfer), named after the doctor that took the osteotomy precedure and perfected it to a point where that is how it's mostly done all over the world now. So.... why not go see Dr. Fulkerson? He's in CT, a 3 hour drive from my parents place in NJ. He's rated in the top 1% of all US orthopedic surgeons, and he's founder of the patellafemoral specialist group. It's only a handful of doctors, and luckily for me I found out my doctor I am seeing in San Fran is on it! SWEET! So, I am going to go out and go straight to the source for a consult. I don't mess around now. ha! Hopefully the doctor here in SF will want to work with me on that and not be too put off that I would want to go see another doc for the procedure and then come back here to continue follow ups and therapy/recovery with him.
Definitely a lot to chew over here. I am going to try really hard to not turn this jaw blog in to a knee blog, but obviously it's going to come up. Hopefully I can get the knee issue taken care of in the coming months and be mostly healed by the end of the year so I can then shift focus back to going in to the revision surgery for my jaw.
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