Need some advice-go to the last comment

[cbrady]

       So I will start my post with my story, sorry it is extremely long but I want to keep track and not skip anything. Up until seventh grade I had no knee pain and was participating in all PE activities and was always one of the first to finish the mile on running days. That summer I was about to enter eighth grade but my brother was entering high school and was going to do freshman football so my mom signed both me and him up for the blue and gold summer football training camp. (I was the only girl and only one not in high school besides my brother’s friend who was in my grade). That went fine as well and I would always beat my brother, much to his dismay, in the running races. Then in eighth grade on every running day I would have knee pain while and after running. It persisted but being in a family in which the only time I went to the doctor was to get necessary immunizations or the one time I split my chin open all the way to the bone and required 50 stitches, I did not tell my mom I wanted to go to the doctor.
        One day my friend, my mom and I were shopping and she decided to tell my mom so I went to the doctor and they prescribed pt which did nothing but the pain got worse...not sure if it was because of the pt or what... We went back to the doctor who referred me to a ortho doctor who said everything was fine...all he did was watch me walk down the hall and looked at my knees, he also said I could get a brace with a patella cut out so I did...they didn't do much but when I was running they felt a little better with them on. He told me to wear them during PE.
         Next comes ninth grade and freshman PE, I was still wearing my knee braces but never said anything to my coach. At this point I still liked running and was not letting the pain stop me, and the pain was not that bad. So one day in PE my coach told us to walk a lap and my friend and I decided to run the lap. When we got back he asked me if I was supposed to be running and I told him I was never told I wasn't supposed to. He asked me to walk away from him then walk back. He told me that I walked with my feet turned out, more on my right then my left and told me from now on I could not run in PE and when we were running to just walk and practice walking with my feet straight. After that I worked on keeping my feet straight but it felt as if my knee was crooked when I walked this way so when I got home I looked in the mirror and sure enough it was.
   After that day I walked with my feet straight so much I got used to it but in all other positions my feet would be out because walking up stairs they would hit each other if my feet were straight. Also, I never sat cross legged because my right leg would never go down very low it would always stay far off the ground and after a minute or two my hip and knee would hurt so I sit with my left leg like I am sitting cross legged and my right leg flipped the other way, like froggie style.
   Long jump ahead and several years of pain after standing for long periods, like when shopping or going to an amusement park is now age almost 21. I currently volunteer at rady children’s hospital in San Diego, CA in the outpatient surgery waiting area. It was there that I discovered what is wrong with my leg(s). I was walking a mother back to see their child in recovery and when I came out the father was on the phone and kept telling person after person that he called that his daughter now had “one straight leg” and so I looked on my sheet to see what surgery she had and it said derotational osteotomy and every time I see a surgery I am unfamiliar with I Google it and so I did and I saw it was for femoral anteversion and tibial torsion so I Googled those too and made my great discovery. I researched into it more and everything clicked.
   When I was younger I would never sit cross legged but in a froggie position with both legs bent behind me. My aunt and mom always tell me that I would trip all the time. I can only cross the good leg over the other but not the bad one over the good one. My hip and knee and leg ache badly after standing for long periods during standing and it does not ease when I sit or lay down. My knee points in when my foot is straight and when my knee is straight my foot points out. All of these symptoms were listed on the pages I was looking up and it just astonished me how much looking up someone else’s surgery reminded me of me.
   After a few days of researching I told my mom and dad and scheduled an appointment with my general doctor for referral to an ortho. The only one I found in SD which treats/ knows about this condition is Dr. Richard Santore. So here are my questions to anyone who actually read this…
-Has anyone heard of this doctor?
-Does my story/symptoms sound familiar to anyone with malalignment syndrome or people
who have had an osteotomy of the femur/tibia?
-Would you recommend seeing Dr. Teitge or Dr. Sanders instead?

I am guessing I should probably wait until after my general doctor appointment and ortho appointment after that before these questions are answered but I always like to know everything and plan out everything so I know what to expect. Thanks to anyone that actually read this or answered any questions even if you didn’t read my novel I just wrote. Haha.

[Silkncardcrafts]

Sorry to hear what you are going through.

I can't comment about the surgeons as I am in Australia. If they specialise in the area you need you should be fine. You can always get another opinion if you need to.

My knee problems have mainly been patella problems. So understand what you are going through.

[drmark]

The story your tell is classic for miserable malignment.  In fact,  I printed it out to discuss with the medical students who rotate with me. 

Since Dr. Teitge, is one of my dearest professional friends and teacher, I wouldn't tell you to see me, rather than him, or visa versa.
Unfortunately, I haven't the pleasure of knowing Dr. Santore, either personally or professionally, so I can't say much about him.
One major positive issue regarding Dr. T or myself, is that we have trained our X-ray departments to understand and to standardize our respective (actually we arre just about the same)
PF studies for malalignment, trochlear displasia, and measurement of the TT-TG.  Having that quantative data, puts our patients in a far better place as we contemplate a major reconstuctive surgery.

Good luck.

[Driden]

Some find it comforting to get 2 opinions from doctors who can do the procedure before laying down on the op table for something like this. My wife insisted that I do this, although it really wasn't necessary in my case because, once the measurements are quantified, the choice of procedures should be obvious to an OS with all of the skills.  Some other points:
*you definitely need a CT rotational study and an understanding of the numerical thresholds for when surgery is indicated.  Drmark has posted on this several times
*ask your doc how many of the procedures he/she has done
*ask about, and understand, the doctor's choice of hardware
*ask about, and understand, the doctor's rehab program and methods for fighting stiffness. As a general rule, knee braces are bad and exercise bikes are good

[allyd]

It sounds like you’ve done your research on your chosen OS. If this OS you found performs the derotational osteotomies, you are likely in good hands. It also sounds like through your volunteering you may have some good contacts in order to get feedback on him, or another OS for a second opinion if warranted. Traveling for a good OS is not always as necessary as it appears. Did you look into the OS that performed the girl’s surgery that caused you to dig into the procedure?

Mostly, just be patient with the process… See your GP, See this OS. And ultimately see what they have to say. You already sound as if you have done your research, because of this it will be apparent to you if the OS knows what to look for and do to help you.

[cbrady]

thanks to everyone who posted and read my long story. I appreciate any advice given and find it very useful. The doctor that performed the surgery on the girl is a pediatric doctor and I looked him up at the hospital when I was there and found out some info. I can't remember the info and forgot his name and did not write it down so when I go back this thursday to volunteer I am going to write it down to research more because I cannot remember if he only operated on kids or not. Dr. Sanders, glad my story could be useful for you.

I will post again after my appt. to see what my gp says and who she refers me to...hopefully she will refer me to someone let alone a doctor who has worked with cases like mine...for example Dr. Santore.

Here is the link to info on Dr. Santore http://www.omgsd.com/pages/dr_santore.htm maybe Dr. Sanders you could look at it to see if he seems to know what he is talking about? oh and here is another link I just found http://www.82sharp.sharp.com/PhysicianProfile.asp?dblink=1&drlink=28
 
Thanks,
Claire

[allyd]

I would definitely also look into the doctor where you volunteer. It’s likely he takes on adult patients as well as pediatric. If not, even just speaking with him or a member of his staff, they likely could refer you to an OS who handles adult cases. Resources such as this are the best way to find a doctor in my opinion. Use them! 

Does your insurance require a referral from your GP to see an OS? If not, don’t be shy about just making appointments with an OS. Honestly, your GP isn’t going to be able to help you. If you do need the referral, don’t be afraid to be specific about who you want to see. Either ask for a specific OS, or be clear you want to see someone who has handled a case similar to yours. 

[cbrady]

Yes my insurance requires refferals which is annoying but it is what it is. I guess I just have to go through the process.

Also I forgot to post that my right shoulder is also noticably lower than my left and it makes clothes fit weird which I am guessing is related to the malalignment. My right leg is the worse leg and it is my right shoulder that is low.

Oh and I remembered the doctor who preformed the girl's surgery was Dr. Henry Chambers. Still haven't looked him up...anyone heard of him or have a recommendation close to Southern California?

[cbrady]

Lisa424,

Thank you for the advice and pm. I definitely will do that.

--Claire--

[cbrady]

Oh and for clairfication in my original post I did not mean choose between Dr. Teitge and Dr. Sanders but would you recommend me seeing either Dr. Teitge or Dr.Sanders instead of the ortho close by me Dr. Santore or now Dr. Henry Chambers as well. I just reread my original post and found out how that sounded. Anyone heard of Dr. Santore or Dr. Chambers? Here is the link to Dr. Chambers to see if anyone can tell if he would know what he is talking about though he seems to like to focus on Cerebral Palsy in children... http://www.cssd.us/body.cfm?id=33 Dr. Chambers is the doctor of the patient who I researched and found all this information.

Thanks,
Claire

[aaa]

On these boards, Drs. Sanders and Teitge are very well known.  That said, they aren't the only people in the world who know about patellofemoral problems, but they are experts in this area.

I'm not sure about Dr. Santore or Dr. Chambers, but getting multiple opinions is probably a good idea.  I think Dr. Amir Jamali might be nearby you, I don't know much about him but have heard good things from a couple of people.  Also, consider if travelling is really a barrier or not.  Flying in / out or driving to different states might not be so bad, considering its major surgery that will hopefully give you a much better quality of life long term. 

You'll find in the 'post-op' diaries section patients of Drs. Sanders and Teitge who have had miserable malalignment, and so you can get first hand experiences with their patients. 

Dr. Teitge typically has a very long wait time for surgery, maybe a year ...  but booking a consultation probably won't have a very long wait, maybe a month or so.  I don't believe the same holds true for Dr. Sanders, I think he is more accessible, and I doubt his surgery wait times would be nearly as long

[cbrady]

Thank you for the information and I will definitely look into Dr. Amir Jamali.

Thanks,
Claire

[drmark]

Dr. Santore has an impressive CV and training.  Having said that, noting means as much as a multitude of satisfied patients.  That research you will have to do elsewhere.

[cbrady]

Dr. Sanders,

Thank you for looking into Dr. Santore on the links I provided. I will look into patient reviews and satisfaction.

--Claire--

[crankerchick]

Sounds like you have gotten some good info here. Congrats on figuring out what is wrong with your leg too, and before having some other likely unnecessary surgery.

I had derotational surgery on my left femur and tibia just over 2 years ago. If i could add to some of the excellent advice you have already gotten, i would just add that in trying to figure out what doctor to use, there are many factors. To start, check out some of the posts on here that detail the types of xrays and ct scans that are used by the experts to quantify these alignment problems. All derotation doctors are NOT created equally, so going on the statement that someone that specializes in the procedure is probably fine is not really a good approach. There are variations on how the surgery is performed, what part of the bone is cut, what fixation is used, and what the rehab protocol will be after the surgery. These things are very important and not to be taken lightly. Also,  there are factors such as how much the bone must be rotated--high angles of excess rotation make other factors more important in the surgery, such as possible nerve damage for larger angles of derotation. There are also some doctors who may not address tibial torsion but address femoral, and vice versa. There are some who piecemeal the surgeries and others who do all the corrections at once, if multiple corrections are necessary. There are doctors who don't even measure the angles of rotational yet they do these derotation osteotomies.

Basically it is very important that you choose the right surgeon for you that also is giving you a full assessment of the entire alignment of your leg. It's never safe to assume that just because a guy specializes in something, it means he will be thorough in his assessments. Different doctors have differing opinions on this condition and the approach to the corrections, so you still want to tread cautiously, do your own research, and consider multiple opinions.