The WAITING ROOM => GENERAL KNEE QUESTIONS and comments (good for new threads) => Topic started by: Sandra1981 on November 08, 2013, 05:51:49 AM

Title: HELP. Im tired of the pain!! new here.
Post by: Sandra1981 on November 08, 2013, 05:51:49 AM
Hello my name is Sandra. I really need some help and found this place and hope to feel a little less alone.

This is my story

IN about 2001 I started having issues with dislocating my knee. It was a buckle. The knee would slide to the side hit the bone and BOOM down Id go. I was always sure I BROKE my knee ( I was young).  I would end up in a brace some meds and no one knew what was going on. in 2003 I lost a child during the 5th month due to this and so my OB decided I needed to see an orthopedic surgeon. The first dr said I had arthritis. Went in, did a scope and said I was fixed. The problem was far from fixed. I started to have a ton of aches and pains in the knee and down the leg. Finally I met my dreamy surgeon who stated that the problem was that all my MRI and xrays were with my leg flat. SO he did xray with my knee bent. It was over on the side. So he said I either RIPPED through or was not born with ligament to support my knee. I had hypermobilty and was a gymnist for years so more than likely it was never there. in 2007 I had 2 medial plications with lateral releases. I was cured

OR so i thought

About a year and a half ago I started slowly noticing the pains and aches coming back. Then about a year ago i noticed the hypermobilty was back. I got back in with a knee dr. My surgeon was gone so I had to see a new dr in the same office. He didnt seem concerned with my aches and pains till the hypermobility showed up and then ordered an MRI. He thought maybe I had a meniscal tear in the knee no matter how much i tried to explain ITS IN BOTH KNEES but the left was worse than the other.

The pain. Ok let me explain the pain before I continue. The pain starts in evening if not continuously going on. The cold weather makes it worse. It starts in the knee cap like AROUND it. sometimes the upper thigh will ache. It usually goes down the leg into the ankle. Ive tried massaging it. NOthing. you cant physically touch the ache. But its unbearable. Not sharp though. sometimes the calf will ache but mainly goes down the shin area ( been checked for shin splints) theres no actual injury to the knee or leg. Compression and stretching it to the hypermobilty, and soaking in hot water help temporarily.

ok back to the story.  So i go get my MRI report so I can call the dr and set up return. The drs assistant says the MRI is CLEAR no tear, they have no idea what is causing the pain. I had to CONVINCE her and deal with her ATTITUDE to get an appt but now that is 6 weeks away. What they dont know is I have a copy of the report. I dont know what it all means and so im here looking for help, advice, etc until the appt.

RESULTS. She was right about one thing. it was clear of a tear. like i said it would be as it wasnt injured.
HOWEVER. it is stated that i have edema in the hoffa pad, patellar alta and trochlear dysplasia (152 degrees) really have no idea what the last one is and if the degrees is significant. It stated that because of these thing it was consistant with patellar maltracking syndrome. 

How does that make my Mri clear.

Thanks in advance for any advice, comments and just for reading this..sorry so long.

info- 32, white female, nonsmoker, overweight (working on losing) limited caffeine. Have had several blood tests ruling out arthritis, of osteo, rheumatoid and even lupus.
Title: Re: HELP. Im tired of the pain!! new here.
Post by: allyd on November 08, 2013, 01:31:06 PM
It sounds like you have been suffering from patella dislocations/instability. Your mri actually does give you some answers as to why. Patella alta: means you have a higher than normal doesn't sit in the groove, but above it you could say. Trochlear dysplasia: means the groove at the end of your femur is shallow. These things can lead to dislocations, subluxations, and poor tracking of the kneecap. These are the things you need to be asking a lot of questions about. Ask if they measuremnts are outside the norm. If they are... there are procedures that can help. Tibial tubercle transfer for patella alta, and an mpfl reconstruction often helps minimize trochlear dysplasia. In certain cases... a newer procedure - trochleoplasty (sp?) Has been done where they deepen the groove.

 Hard to say if your pain is just caused by this or if you are also getting some wear and tear in the joint as well.

Hope this helps some.
Title: Re: HELP. Im tired of the pain!! new here.
Post by: IHMK on November 08, 2013, 02:51:21 PM
How much choice of orthopaedic surgeons do you have, with your insurance? I know it's extremely frustrating to have to wait 6 weeks, but if you're waiting 6 weeks to see a doctor who doesn't seem interested - even worse. And if he isn't particularly interested in your case, that suggests to me that he doesn't have the expertise to deal with it.  If you can mention where you are, possibly someone here can make some recommendations.
Title: Re: HELP. Im tired of the pain!! new here.
Post by: Sandra1981 on November 09, 2013, 01:21:37 AM
 thanks  to  both  of  you. I  see  my  regular  Dr  next  week  and  an  going  to  ask  him  if there's  Anyone  else  he  can  recommend  .  worth my  insurance I  need  him  to do referral.  I'm  located  in  Lansing Michigan.  I'll  update  when I talk  to my dr  next  week.
Title: Re: HELP. Im tired of the pain!! new here.
Post by: allyd on November 09, 2013, 03:23:34 AM
Your location is good luck for you! I'd suggest you look into and/or ask your regular doctor about a referral to Dr. David Shneider (who is in East Lansing) or Dr. Robert Tietge (if you want to travel to the Detroit area). You'll find they are both knowledgeable about 'patella femoral' knee problems. By many accounts on these boards, either of these guys will be willing and able to help you. Tietge is a lot more well known and seems to have a long wait list. Obviously, don't blindly trust my random internet referral, but DO look into these guys.

A quick google search on Shneider pulled up his website which I actually just got sucked into reading all the good basic info on it. Check it out. at the very least, it will help give you a basic idea of what might be happening in your knee. (
Title: Re: HELP. Im tired of the pain!! new here.
Post by: Sandra1981 on November 09, 2013, 02:12:50 PM
allyd  thank you!  what's  funny  is that  is  the  office I  go  to.  I'll  ask  my  dr  to  refer  me  too  him  for  second  opinion.  but  from  what I  read  it  explains. I  had  the  lateral  release  done  years  ago  by  another dr  in  that  office  and  he  said  they  fail.  and I  honestly  believe  that's  what  is  happening.
Title: Re: HELP. Im tired of the pain!! new here.
Post by: Sandra1981 on November 10, 2013, 02:33:12 AM
just wanted to let everyone know that i read about what dr Shneider was saying on his site. I emailed him and he wants me to call monday to get in to see him. I will definately be doing that. I want someone in his expertise to help me though I do see another dr in his office. Everything that he mentions is not the best way to test for knee issues my dr has done. and all the things he said is best for accurate answers he has not done so Im hoping to switch drs

Thanks again for the advise
Title: Re: HELP. Im tired of the pain!! new here.
Post by: allyd on November 10, 2013, 02:47:41 AM
Glad you are heading in the right direction and were able to contact him. Half the battle is just finding a doctor with experience in these issues. They aren't the most common of knee problems. Good luck!
Title: Re: HELP. Im tired of the pain!! new here.
Post by: Sandra1981 on November 11, 2013, 01:35:55 PM
YAY i called the office this morning and I can get in in about 1 to 2 weeks. Just waiting on my doc to send the referral over there !!!!!!!!! ;D ;D ;D ;D ;D
Title: Re: HELP. Im tired of the pain!! new here.
Post by: Sandra1981 on November 11, 2013, 01:37:13 PM
also Allyd I was stuck on his sight as well. very informative...i read everything and it was all what I was going through. THANK YOU SO MUCH. ID STILL BE SITTING IN THE DARK IF NOT FOR THIS SITE AND YOU
Title: Re: HELP. Im tired of the pain!! new here.
Post by: IHMK on November 11, 2013, 02:31:11 PM
Sandra, I am thrilled for you! What luck that you are so near someone with the knowledge and experience and interest to help you.  Luck, and perseverance on your part!

Good luck with everything.
Title: Re: HELP. Im tired of the pain!! new here.
Post by: allyd on November 11, 2013, 03:09:30 PM
Glad you could get in right away. Unbeknownst to me had some of the same ‘dumb luck’ in terms of being lucky enough to have one of the best local to me; and then stumbling into a doctor that knew well enough to refer me to my current Orthopedic surgeon. So it’s really all about having someone point you in the right direction at the right time. Definitely glad to help.   

And keep reading and learning - the more you understand, the better you'll be able to question and comprehend as you get answers.
Title: Re: HELP. Im tired of the pain!! new here.
Post by: this sucks on November 14, 2013, 04:54:39 AM
I hope someday you will get some relief. I smashed my patella 13 mos. ago (comminuted fracture) d it was pieced back together as well as it could have been. Very severe re my 1st surgeon. It happened oer a year ago, have had it dr 2x, two shots of cortisone, one shot of lubricant to the tune of $672.00. He told me in June that there is nothing more he can do for me so that was the end of any pain med. Had MRI in Feb., had to quit PT 2x due to infections. Saw a second surgeon again today for another opinion for the last time. He ordered a CT scan which I did in Oct., told me today that there is nothing he could do and can't understand why I'm crying from the pain. On disability from a ten yr old back injury and nobody wants to hear about how not being able to walk affects my back and sciatica. Was rcommended to pain management, didn't want to go this course but can't live this way.

Best part, I'm a full-time caregiver for my mother with Parkinsons and advanced dementia, no short term memory. Every time I lay down in bed she's calling me, wakes me up all ight and I wake up every hour anyway. I've never had a chance to heal, I shop, cook, maintain the house, inside and out, and answer the same questions ALL day long and into the night.

Not on the pitty pot but am back to supporting myself to get on the pot again. I've been afraid if I got on the floor I wouldn't be able to get up, oh, Mom's 95% deaf and would never hear me. Later....