No words can express how sad I am for you. I don’t even know how to reply. Hope you get some relief.

I am writing tonight because it feels like my adhesions are growing even more. At 12 weeks I have this weird net like feeling down into my calf, maybe it’s a kind of numbness, but it seems to be moving toward my ankle. Crazily it feels just like scar tissue. Does anyone else get this? My incision scar is especially tender, numb on both sides, and I can change the intensity of, or at least change the feeling of the adhesions. And even more weird is the feeling like my incision area is wet. Are there swear glands that become active? This is all so unnerving because no one can tell me what all these feelings mean. So here I am trying to fall asleep as usual. Just writing this helps me somehow.

@sarastafford What am I seeing in the X-ray? Is that a revision or the result of multiple surgeries trying to get it right? I'm am SO sorry for all you've been through. Babette

That is 7 total knee anthropastr

@sarastafford – It sounds as if the pain management is probably your top priority right now. I believe you said that your pain management doctor said he could refer you to another pain clinic or specialist. I wonder if you might want to revisit that suggestion and accept his offer? Sometimes, for whatever reason, a doctor/patient relationship doesn't work out. It could be that you would have better success and find a better fit at another clinic. If you could manage the pain, it probably would make it easier to make the medical decisions you face with the orthopedic issues. Does it feel comfortable for you to call back and get a referral?

I’m looking into mm. In my state you must get a card, prescribed from a doctor, to go to a mm dispensary. I wish I could just try it for a week or two to see if it works. I do want to share an idea I have not seen on the board nor have I entertained so far. A new pta (who was a student of mine 30 years ago!) worked on me today and told me she has seen people wake up with a positive change in their motion. In other words, she’s seen people’s scar tissue resolve on its own. Now that’s not to say it resolved entirely or completely with no work, but she did say it happened without further surgery. I’ve been so focused on how I must wait 6 months before I can have any progress after arthroscopic arthrolysis. I guess I need to keep working on everything I’m doing; pt, dynamic brace, tens, stationary bike, ice, elevate, walk. I’m exhausted just typing all those things. Each day I’m trying to do 30 minutes of weeding or any outdoor job instead of the entire morning as I used to. Maybe I will be able to walk my daughter down the aisle September 29. Miracles can happen and if not, September 29 is closer to 6 months and another surgery so one day i will walk again. I doubt I’ll remain this positive for long.

Its a bewildering situation to be in- I empathetically connect with so many of you all. I'm in week 2 recovery after a hip replacement and MUA -my fifth procedure around my knee, all the time trying to stave off the ever encroaching scar tissue and the never-ending pain story. I have my mm supplies and for me it helps a bit but does not eradicate this unnerving buzzing, stabbing ache. A CPM(continuous passive motion) device is my beauty rest companion placed for the foreseeable future on the other side of my bed. in my 2 year journey I have found this forum very good therapy for mind and soul. Knee? well thats still a problem.
More later…. looks like the elusive sleep fairy is dropping by.

Hi, @sarastafford and welcome to Connect. Sara, I am so sorry for what you have gone through. It is definitely the worst nightmare I have heard of regarding a TKR. I hope you manage to find some doctor, somewhere who can help you. I can imagine how despondent you must be. Reading your tale even makes me feel helpless in not being able to offer any advice, just concern and hope for the future.
I think you need to get an opinion at the top medical center that you are able to go to. US NEWS just published their annual report on the best hospitals and departments. I would find the hospitals that have the best ortho departments and find a way to go to one of them. You don't mention where you are from, but I hope there is something reasonably close to you. I am very fortunate in that regard, I have Boston 55 miles down the road and go there for many things. Speaking of which, MGH rated second in best hospitals in the country, second to Mayo! Plus I think MGH had the most areas of excellence. Actually though, I don't think MGH is the best place to go to ortho.
Try to stay positive, there has to be some help out there.
I really do wish I could help more. Pain for that long is so destructive to a person, emotionally and every other way.
JK

Holy cow, I've never heard of anyone having 8 replacements ! Does that happen to many people?

Hard to believe. Try and get a second opinion on that.Wont happen. He dropped me like a rock. I paid myself with good insurance $24,000 so you can only imagine how much money He has gotten.Also about about eight or nine months now I walked outside and tripped because of my knee and fell and broke my wrist in three places and needed surgery
Won’t help me. I am not a person who sues people. O would love to hear his explanation for all surgeries manipulations
.

That is the result of 7 replacements and then hinged knee surgery. Rods up and down my leg. I can’t get in and out of cars. When I stand up I have to wait about 30!seconds before I
try and move . i can’t Lift my leg up and put it on couch Without holding for support The pain is like nothing I have ever had before

I am in Washington

@sarastafford I presume the state, not DC. Unless you are way out in the boonies I would think there must be some excellent medical centers within a reasonable distance. Check out that report that I mentioned, ratings of hospitals by US News and World reports.
https://www.usnews.com/info/blogs/press-room/articles/2019-07-30/us-news-releases-30th-annual-2019-20-best-hospitals-rankings
There's U of Washington in Seattle, and if you are in DC, Johns Hopkins is just a train ride up the road.
JK

Sorry yes the state. The problem is With my history of so many surgeries Nobody will come near me. My doctor certain won’t give me a referral to another surgeon

@sarastafford Are you not on Medicare, then? If you are on Medicare you don't need a referral. The right doctor might welcome the challenge.
JK