Keep getting the run around (lost now)

[Mr.ink]

Hey guys,

So I'm at a lost, and don't know what to do.

Some already know my story. So to give the gist of it, my surgeon isn't helping me any more, my pain management doctor last week said I have severe osteoarthritis and my knee is definitely bone on bone.

I went to see a new surgeons office that deals with strictly knees. They called me today after receiving my med records and told me they won't be able to help me. That I should go to UNM. Which is where my other surgeon refereed me to.

So I called university of New Mexico - which by the way is a 10hr round trip. They won't do knee replacements if you are under 45. I'm 32. I'm lost on what to do anymore. I did call the VA to see what they say. I really don't want to deal with them and this though.

I'm tired of not being active. I literally sit around for most of the day to stop the knee from grinding so much.

Does anyone have any advice?

Thank you in advanced.

( @Celle I'm tagging you since you were talking to me in my last post)

 

[Celle]

Let's see if @Jamie can help you. If you give her your post code, she may be able to suggest someone to help.

Jamie, Mr. ink's other threads are here
https://bonesmart.org/forum/threads/could-anyone-confirm-this-noise-video.43853/
and here
https://bonesmart.org/forum/threads/could-i-get-some-info.43776/

 

[Josephine]

I'm so sorry for you. That really sucks

 

[Jamie]

I will need to know your zip code. Be sure and tag me in the post so I see it quickly. It may be that you will need to go to the University Hospital, as sometimes it is these larger hospitals that have the doctors who deal with "out of the ordinary" cases like yours. You are "out of the ordinary" because of your young age. Doctors just haven't kept up with the idea that young people can desperately need joint replacements too! We'll find you someone to help you get your life back.

 

[Mr.ink]

HI @Jamie my zipcode is 88081
I'm in between El Paso, Texas and Las Cruces, NM. I appreciate you looking.

I'm going to call the university tomorrow again to see if there are any exceptions.

Thank you @Celle for tagging Jamie.

 

[Jamie]

Hmmmm.....I do see your problem. You are located a pretty good distance from any major hospitals. I took a look at the ones in El Paso that do joint replacement, and I frankly wouldn't recommend either of the two I saw. Normally university hospitals are good, but the one in El Paso had lackluster ratings for patient experience, performance of the staff and infection levels.

I think you need to plan to drive to have this done. It can be done but just requires a little extra work and planning. And, you'll need someone to be with you. Is this something you could consider? I would like to see you go to Albuquerque or Tucson. So.... @Mr.ink .... let me know.

 

[Mr.ink]

@Jamie Thank you for looking. Yeah I'm guessing my best bet is to travel. I got hold of my insurance and they told me they cover, gas, hotel, food, etc. so that will help.

I'll definitely call UNM tomorrow morning to speak to someone else asking if they do any "special cases". If not I'll have to figure out where to try next.

 

[Jamie]

Once you are sure you are willing to travel, pick which town you would like to explore and I can recommend some options for you.

 

[Mr.ink]

Thank you @Jamie ! I really appreciate it.

One thing though, say I travel to see a doctor, I will have to travel multiple times though right?

 

[Horseshoe]

@Mr.ink hi, I'm from the hip side and was over here doing some knee research for my cousin and saw your post. From my time on BS I've kept a mental note of well regarded OSs should the need arise.

Good to get Jamie's info on drs. There's a renown OS in Plano, TX, Dr. Gerhard Maale, MD, who does revisions and complex cases. Even if it's too far, perhaps his office can offer guidance to another clinic. Some in-demand OSs will look at your xrays too via fed ex (not sure of the fee). They are trained to look for problems and resolutions, hope this helps.

Anyway, it's worth a try, chronic leg pain is not fun and hope you can find a resolution soon.

 

[Mr.ink]

No not at all, thank you! Any info/help is greatly appreciated. I should be hearing back from UNM today to see if they will take me on as a "special case" since their guideline is no one under 45.

I will definitely call them today though to see if they know anyone.

Thanks again!

Mike.

 

[Jamie]

Dr. Maale is definitely a great surgeon. He is always a recommendation but farther for you to travel. His primary expertise is with infections, but would be quite capable of helping with a revision that was not due to infection too.

If you see a surgeon out of your immediate area, it is true that you'll have to make several trips. People do this all the time, though. Usually the clinic can help you find reasonable accommodations if you need to stay overnight (university hospitals especially frequently have relationships with nearby hotels for patients to stay in if needed). But this can all work out and it's something you can discuss with the surgeons who you are considering. Don't let this stand in your way of getting the best care possible. You're worth it!

 

[Susan209]

Hi @Mr.ink , I'm a hip person myself, and located in Australia, so won't be of much help to you at all. You have come to the right place for help and support, though. All the best.

 

[Arttie]

I am going to try to remember to ask my OS, on Tuesday, why individuals in your age group are expected to suffer for years with bone on bone osteoarthritis. I hope you find an answer.

 

[Mr.ink]

Thanks for all the input guys!

I saw pain management today, I was hoping that after letting him know I keep getting turned down by surgeons that he would know who to see but nope...lol.

He did have me sign up to go in on Dec 5th to get a nerve block done. I don't know much about it, but I'm thinking about not doing it. It might take away the pain but my knee is still gonna grind like crazy. So I don't think it's a great idea.

As for NMU, I spoke to them today. My case was given to 2 surgeon there. I'm just waiting for them to review it and see if they are willing to take me in as a special case.

 

[PolarBear60]

Mr.ink, You could give my surgeon in Temple, TX, a call to see if he can work with you. Last I heard his youngest patient was 42, but I doubt he's mind revising that. When I saw him, he based his analysis on medical need. He likely won't show up in Jamie's database, because his volume isn't great enough yet (I think he's working on it -- he had to hire a PA last year). His name is Dr. Kevin Caperton, and as a Texas Tech grad, he's spent a few years in your neck of the woods. Give his office a call at 254-298-2546 to see if it's worth a trip.
http://lrhealthcare.com/doctors/caperton

He did both my knees, and I'm very pleased with his work. The physical therapists who work with his patients post-surgery have told me he gets excellent results, so it's not just me.

 

[Mr.ink]

@PolarBear60 thank you! I appreciate it. After I find out about UNM (hopefully on Monday) then I'll start calling these surgeons you guys are reccomending.

 

[sistersinhim]

Do a lot of research on a nerve block. I had one back in the 90s and had a horrible reaction. The knee felt much better, but the burning pain in the whole thigh was much worse than the knee ever was. I couldn't even stand anything to touch it for about a month. As the block wore off, the burning pain subsided, but the knee pain came back. It's possible the doctor did the block wrong and that now the procedure is much more effective. I sure hope so. Just check out the success of it now, to be on the safe side!

 

[PolarBear60]

They did an ultrasound guided nerve block for my right TKR. It was marvelous.


Sent from my iPhone using BoneSmart Forum

 

[sistersinhim]

@PolarBear60, you misunderstood me. I had the nerve block I was talking about as a pain reliever to postpone another surgery. The pain 'specialist' said he would freeze the nerve leading to my knee and it would last a few months. I did have a 'normal' one for my tkr and loved it.

@Mr.ink, did I misunderstand you? I thought you were having a nerve block as a way to not have to have surgery for a while.