Oregon knee specialist needed!

[kidwithaknee]

Hi There--
I saw this issue partially addressed in a thread from 2017, but I cannot find it once I am logged in.
Anyway - I was 9 y.o. and had a "loose" ACL - my patella was dislocating. They did something - not sure what, but when I was 12 I had the Hauser - which means all the growth that happened after that conformed to the unnatural internal rotation that results from a Hauser. I've had three more surgeries since. Total of 3 screws and 3 anchors, the last surgery in 2010 - the docs (who were at a medical school of a Big Ten Sports College) had to consult with someone in another country. I've known for a while I would need TKR. The deal I had with my doc was as long as I had the functionality I had and was not in pain, we could hold off.
Well -- here we are. Still functional - I have difficulty with stairs, but I can dance, jump (in certain ways), but occasionally, something is sliding/ getting caught on the outer bony structures and causes pain (not when I'm doing anything necessarily - it can happen when I roll over in bed). Doc thought it was the LCL - nope, MRI shows it is fine. It seems to be a quad muscle. I recently moved to a different state - so I will have to meet a new ortho.

My concern is that when I discuss these issues and the potential complications from having a Hauser at a young age, I get dismissed. My fear is that since the Hauser was generally not done on kids, and that it has for the most part been abandoned now - that docs may think they can handle it, but when they get in there and actually see the mess that is my leg, there will be issues. I was still growing when I had the Hauser, so pretty much everything is not where it should be. When anyone looks at my x-rays or MRI they say "You're not in pain?" -- nope (bone on bone). I assume nerves are cut or dead due to all the work. Most recent MRI shows large complex degenerative tear of the medial meniscus - I don't feel it, never have. (had a meniscus tear in other knee which was repaired)

This is all very distressing as I have always favored the left leg because of the surgery when I was 9 and always put more weight on my right leg. This has resulted in arthritis in that ankle and a worsening of my congenital flat foot. The reality is that I will also need arch reconstruction on that foot - for now I have a hard shell ankle brace and arch support. With all of that I really need to make sure if I go ahead with a TKR, I will not end up worse off. I am 51.
Two questions: 1. Do I need to be a strong advocate and push the doc about telling me everything, and 2. Since I apparently cannot feel most of the damage that is already there and it will be a while before I can see the ortho - am I making things worse by engaging in weight bearing exercise? My primary is honest with me and says he would prefer me to not, but really doesn't know. The earliest consultation I can get with the ortho is January - am on waitlist for cancellations. I also don't want to wait for January and have this one refer me to someone else because it is complicated (which happened before).
Thanks.

 

[djklaugh]

@kidwithaknee WOW give the complex history your knee has I'd suggest that you need to start with an expert - a surgeon who specializes in complex knee surgeries. What part of the country are you in? I am not personally aware of the best knee surgeons but several of my colleagues here are. I'll tag @Jamie - she's really good at locating the best of the best.

 

[Jaycey]

@kidwithaknee You definitely need to see a specialist for this. Anyone with a history of treating complex knee issues will be able to address your concerns. I agree - they need to listen and have a good discussion with you.

If you give us an indication of where you are located we might be able to recommend someone.

 

[kidwithaknee]

I am in Southern Oregon, but willing to go anywhere that is in-network for my insurance.

 

[Jaycey]

@kidwithaknee I looked at our recommended surgeons list and didn't see any knee specialists. I've changed your thread title to get input from our members in your area.

 

[Susie-Q]

I'm tagging @BBCG on the off chance she might know someone as she lives in Oregon.

 

[JusticeRider]

@kidwithaknee , have you ever been evaluated for hypermobility spectrum disorder? With your lax ACL, dislocating knee, and flat feet, it sounds like something that might be worth checking out. You can find the ‘Beighton Score’ online that is a quick self test for it.

If you fit the criteria, you could ask your Dr about a diagnosis. It may prove helpful to your medical team with their approach to your treatment. If you’ve already looked into that or been diagnosed, please disregard

Best of luck finding your surgeon and getting your knee straightened out (no pun intended)!

 

[kidwithaknee]

Thank you!!!! Thank you @Jaycey , thank you @Susie-Q , thank you @JusticeRider
I've wondered for quite sometime about the hypermobility. I looked into Marfan syndrome years ago and when I heard of it - EDS (but there are so many kinds...). I never had the other symptoms of Marfan syndrome and I guess I have just not thought about asking about EDS - I will look into it more as I definitely do have hypermobility (Beighton score at home 5 on part one and 4 on part two).

 

[JusticeRider]

Hey @kidwithaknee yeah, your Beighton score is notable for sure. You’re right that there are many similar and overlapping conditions in the spectrum of hypermobility. I just got diagnosed this year and my PCP said sometimes it’s hard to definitively say whether it’s HSD or HEDS, etc. She said a rheumatologist or geneticist might be worth consulting and I’m considering it. I really feel for you on the early and multiple joint issues ): I will tell you that finally, more than a year out from my PKR, my knee is better than it’s been since…well, ever, actually! My troubles started in my late teens. I hope you can get that TKR soon and have similarly good results. I would definitely have a list of in-depth questions for any OS you see. Also, it might be too far, but the University of Washington has a stellar orthopedic program. Best of luck to you! You’ve come to the right place…BoneSmart is an amazing resource!

 

[Jamie]

Jaycey is right….I don’t have any recommendations for Oregon. The closest I have would be in San Francisco or Sacramento.