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Author Topic: Fustrated with my OS...  (Read 2328 times)

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Offline Kimberly 77

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Fustrated with my OS...
« on: August 03, 2011, 07:35:27 PM »
So had follow up appointment yesterday with my OS after having 5 Supertz injections. At my last appointment he told me if the shots didn't work we would talk about replacement options. Well after a 2 hour ridiculous wait to see him, he tells me there is nothing more he can do at this point. They did more x rays and I am slightly more bone on bone. He suggested a unloader brace, which is crazy being I only have one leg and walk with crutches, seems like it would hinder me even more. He also suggested more physical theraphy, but I have done lots of pt and not really had any sucess. He also suggested e-stim, which I am already doing at home.(bought my own unit) He said try the brace and come see him in 4 months...4 MONTHS. So guess I have another 4 months to just sit around and wait and see if my cartilage will miracously heal itself. Then he would consider replacement, which is exactly what he said at last appointment. I don't really wnat to rush into a replacement but I feel like he is just blowing me off the way my first os did. He literally told me I was too much risk being a amputee and he wouldn't do anything else to my knee, then proceded to tell me I should research online and find a different os. Couldn't even refer me. So I had my GP refer me to the Dr. I am seeing now. I have liked him up until this point and still do a little but am at the end of my rope and feel 4 months is ridiculous. Thats all they do is look at you and say give it more time, as if it will heal itself. Well after 2 scope and being told only thing to take pain away would be replacement, it makes no sense to me to just wait and see. Is this the normal approach to things or am I being discriminated against because of my special circumstances? I feel hopeless, afraid all Dr.'s I go and see will say the same, too high risk.
Right leg amputee.
Osteoarthritis in left knee.
Medial femoral condyle defect, arthoscopy 8-2-10
Grade 3 defects, patella, medial femoral condyle, tibia scoped1-12-2011
Physical theraphy and awaiting microfrature 2-1-12

Offline subwayknees

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Re: Fustrated with my OS...
« Reply #1 on: August 04, 2011, 01:46:26 AM »
I am new here, and hope I do not start out posting too much.  But I have had similar situations with os's putting me off.  In my case I am opiate dependent, having been in pain management for five years on heavy doses of morphine and methadone for knee and back pain from anaccident.  I have been told by several doctors that they do not like to do surgery on opiate dependent patients because it is too difficult to manage post operaive poin.  Three have said the same thing.

Finally I decided I would only see doctors at major University teaching hospitals, as per my primary physicians suggestion.

I think that is where you shold go.  I can understand a surgeon being very cautious with a total knee replacement on an amputee.  There are so many things that can go wrong.  However at the major teaching hospitals the surgeons are much more able and better trained to deal with special circumstances.  As soon as I started seeing physicians at these hospitals I got a totally different outlook.  They are not afraid to take reasonable risks.  I know I am generalizing but in my case I have found that the docs at he University facilities have better back up from anesthesia, and other specialists and are not afraid of dealing with post op pain on opiate dependent patients.  I think you would find the same mind set.  However you should be happy that the doc who blew you off did so, the last thing you want is a doctor to take on a case he/she does not feel secure about, everyone loses.  I would not wait, but if you can I would locate the two closest Medical Schools and contact the hospitals that are affiliated with them and make appointments with their top knee people.  Hopefully you will get a different and more agressive and secure cadre of professionals.

Offline Kimberly 77

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Re: Fustrated with my OS...
« Reply #2 on: August 04, 2011, 02:57:53 PM »
Crazy thing is I am seeing the top OS in my area. He is not at a University hospital but he is co owner of the Physicians Specialty Hospital I had my surgery at with him. He also is the Arkansas Razorbacks primary ortho Dr. To go to a bigger hospital would mean a long travel for me. I guess Little Rock Ar. or Tulsa OK would be closest to me ,anyone on here know of a good Dr. in those areas??? I do agree that maybe I am not looking in the right places, I also do agree that I need a specialist that specializes in high risk cases, was told my Doc would be that person. I ahve looked over patient reviews for my Dr. and tried to find out as much as I can about him, all says good things. Only info that seems hard to find is how many replacements he does a year, which I was told is important in deciding who should do the surgery. He didn't say he wouldn't replace my knee yet, he just keeps saying it would be an option if nothing else works. This has been going on for a year and a half with him, and nothing else is working. My other complaint about him is he has never prescibed any pain meds to me except for after surgery. He feels to much risk of becoming addicted, which I sort of agree with. I don't want to be addictd to anything but am tired of constant pain and not being able to sleep. Pain will wear you down! Oh where to go from here...?
Right leg amputee.
Osteoarthritis in left knee.
Medial femoral condyle defect, arthoscopy 8-2-10
Grade 3 defects, patella, medial femoral condyle, tibia scoped1-12-2011
Physical theraphy and awaiting microfrature 2-1-12

Offline smillie

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Re: Fustrated with my OS...
« Reply #3 on: August 04, 2011, 11:14:22 PM »
Kimberly, I well know that frustration. In my experience, the doctors who kept putting me off for another month or two months or four months were the ones that didn't know how to help me. When I saw a doctor who knew how to help me, there was no putting off. He was ready to help me right away.

Yes, I do think you probably get a lot more hesitation because this is your only knee.

And if you're willing to drive to LR or Tulsa, you could drive just slightly further and see a good doctor that I know.
patella pain began early teens
'94 TTT/LR/VMO adv.
'94 MUA
'10 tried PT again
1/11 scope/hardware removal
4/11 (Finally!) dx medial instability due to LR
5/9/11 LPFL reconstruction scheduled

Offline Driden

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Re: Fustrated with my OS...
« Reply #4 on: August 05, 2011, 12:20:02 AM »
Take smille's advice. I am from LR and grew up in NWA.  I have seen the best this state has to offer. Smillie's doc is who I see now.

Offline smillie

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Re: Fustrated with my OS...
« Reply #5 on: August 05, 2011, 01:13:29 AM »
My original OS was in LR. :-) Definitely worth the drive to TX, though.
patella pain began early teens
'94 TTT/LR/VMO adv.
'94 MUA
'10 tried PT again
1/11 scope/hardware removal
4/11 (Finally!) dx medial instability due to LR
5/9/11 LPFL reconstruction scheduled

Offline subwayknees

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Re: Fustrated with my OS...
« Reply #6 on: August 05, 2011, 03:02:48 PM »
I would not rush, I would put the extra effort if possible into seeing another highly skilled doctor.
By the way, if you want to try to find out how many surgeries of your type the doctor does you may want to call the Operating Room nurse administrator at your doc's hospital and ask.  They keep detailed records of the number and type of surgeries done by each physician.  If she or he is nice, they will go the extra mile and give you the information, if not call the hospital medical director and ask.  But again, in your situation you have no room for error so regardless of the reputation of one individual doctor I would do whatever I could to seek someone from a different University center.
I have found that calling and asking for the chief of the joint replacement unit at these hospitals gets you usually to the doc at that facility with the most experience.  Once you have that infomation it is more a matter of chemistry to see if you feel safe and can communicate with that doctor.  Good luck and remember things happen for a reason, it might be best in the long run that the doctor blew you off.

Keep trying

Offline smillie

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Re: Fustrated with my OS...
« Reply #7 on: August 05, 2011, 03:40:17 PM »
I have seen a lot of OS's including ones who teach at the University Medical Center and have the most respected surgery practice in the area. Those were NOT the doctors who were able to diagnose my problem. The two smartest doctors I saw were practicing alone or in a very small practice and were really focusing on their patients. They both spent more than 5 minutes with me and didn't blow me off when my case didn't fit a tidy little menu of procedures that they like to do. You can go to someone who will try to fit you to their high-production mold or you can go to someone who will make a mold to fit your unique problems. Big difference! I wouldn't be walking around today and dancing at weddings if I had stuck with the university guys.

I'm not saying that the university doctors don't know what they are doing, but I am saying that they don't trump a smart doctor who is out there getting good results with his patients. And I'm also saying that when it comes to some specific areas of knee problems, you have to seek out the doctor who really specializes in that particular area and he might not be teaching in a medical school.
patella pain began early teens
'94 TTT/LR/VMO adv.
'94 MUA
'10 tried PT again
1/11 scope/hardware removal
4/11 (Finally!) dx medial instability due to LR
5/9/11 LPFL reconstruction scheduled

Offline Lottiefox

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Re: Fustrated with my OS...
« Reply #8 on: August 05, 2011, 04:26:18 PM »
Kim,

Your OS sounds like he hasn't got a clue what to do now and hasn't got the balls to make a decision. I suspect that Yes, being an amputee does make you a higher risk for the operating surgeon but it isn't as if you don't know yourself that it is risky having a TKR on your one remaining leg. But ewhat is the choice - to wait until you are 60 and miss out on life because doctors won't use their skills? I think your current doctor probably hopes you'll go away and he won't have to make the choice to do something!

Personally, if I were anywhere near TX I'd be seeing Smilie's doc. I am continually impressed by what his patients achieve. Yes, surgery is a risk. I know the hard way that complications occur no matter how fabulous your surgeon is (and my foot doc was awesomely good) and how hard you try and avoid problems arising. But, if we want a chance of a normal life without being compromised by a joint every step then we (and our doctors) need to plan a strategy to meet everyone's needs.

I'm so sorry you're being fobbed off continually. Might be time to travel.... :P

Lottie x
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline Kimberly 77

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Re: Fustrated with my OS...
« Reply #9 on: August 05, 2011, 04:39:57 PM »
I think you all are right. Traveling is hard for me but I am sure I could arrange it somehow. My car sucks and I have 3 kids to contend with so it would be a huge hassel but worth it if I got answers. Smiilie I would like to know who your OS is, Please.
Right leg amputee.
Osteoarthritis in left knee.
Medial femoral condyle defect, arthoscopy 8-2-10
Grade 3 defects, patella, medial femoral condyle, tibia scoped1-12-2011
Physical theraphy and awaiting microfrature 2-1-12

Offline subwayknees

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Re: Fustrated with my OS...
« Reply #10 on: August 05, 2011, 09:15:38 PM »
smillie,   You are correct at one level, I guess I was guilty of generalizing, but more so than not, when it comes to the more com plicated cases you do have a larger pool of surgeons to draw from in a Universiy setting.  You are also correct to note that some time ago most all orthopedic surgeons had a great deal of knee klnowledge, today with more advanced techinques and robotic assisted medicine the orthopedists are even subspecializing.  Some ten to focus on shoulders, others on hips, some on hands and then knees.  The day's of finding a good general orthopedic surgeon are more difficult as medicine becomes more technical, so an orthopedic surgeon who focuses on shoulders may not be as good a candidate as one who seems to work most offen with knee patients.
That said, I myself am alive because of the skills of a rural doctor in a rather small hospital, as I suffered a brain bleed on holiday in a small town.  I was in a coma and there was no time for family to transport me to a major medical center so a local neuro surgeon in solo practice stepped in and saved my life.  When I was finally transferred to Georgetown University Hospital and woke up the surgeons there said that the doctor who first cared for me in a small 50 bed hospital did a fantastic job and I was alive because of him.
However  when we do have some time I think overall with the peer review and research demands made on doctors in teaching hospitals today there is a better chance of finding someone who may be better informed and more up to date than a surgeon in a rural area.  Again I am making a general statement and that is my bias, but in a case like kimberly where there is little room for error I would at least attempt to get the opinion of a doctor at a large teaching hospital.  In matters like these I do not think you can ever be too well informed, and armed with information one tends to make the best decisions.  In my case as an opiate dependent patient with seven knee surgeries and being at greater anesthesis risk than most due to the history of my brain nhemorrhage a few years go I feel safer going to a hospital where I knw there is a large group of specialists available to step in were something to go wrong.  As a matter of fact several well known local doctors in my area who do a lot of knee revisions would not do surgery on me because of my opiate dependence and neurological history as they consider me a high risk or complex patient and referred me to places like Georgetown where my new surgeon operates from or John Hopkins a hundred plus miles from my home.
But smillie is correct in that one should be careful of generalizing as I have seen some so called "top doc's" at major hospitals that are so into themselves they cannot relate to thier patients or else throw you off to thier residents or med students, I do not want to be someone's learning tool and if I am paying for the top doctor I want him/her to do the surgery not stand behind a resident who is learning making sure they do a good job, as a matter of fact I specifically stated in writing on my last surgery that I did not want any med students in the o. r. "learning" while I was having surgery, I want my doc focused on me, not answering student questions.
Good luck

Offline Kimberly 77

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Re: Fustrated with my OS...
« Reply #11 on: August 17, 2011, 09:07:41 PM »
Well heres where I am at now. I didn't get the brace figured it is a waste of time for me. I did however go and see a podiatist for my ankle issue which I suspected could be throwing my knee off. My ankle is really broken down from the overuse and seems to be pushing my knee to the broken down side also. I had my appointment yesterday, he told me good and bad news. The good news no arthritis in my ankle, the bad news lots of weak ligaments and a broken arch. He has suggested a orthodic for my shoe, he will be making it. He also said they ankle is definately affecting my knee. He said I am off several degrees in comparison with normal allignment. He said he will have to slowly correct it with the shoe insert overtime and that surgery maybe needed if problem still persist. So all and all a productive appointment. I contacted the Dr., Smillie suggested, he spent a good 30 mins. talking with me. I told him everything and he asked lots of questions. He also agreed I have to start with my ankle before I can fix my knee. He wants me to come for a arthogram of my hip, knee and ankle and suggested that a osteonomy sp? might be the answer for me, which I have never been told. I would love to go and see him but am unable to travel there at this time, but hopefully will be able to arrange it soon. He seemed to think I need a Dr. who specialize in all joints not just a knee specialist. So now I am on the hunt for a good joint specialist in or nearer my area. Thanks Smillie, I got some good info and advice from him:)
Right leg amputee.
Osteoarthritis in left knee.
Medial femoral condyle defect, arthoscopy 8-2-10
Grade 3 defects, patella, medial femoral condyle, tibia scoped1-12-2011
Physical theraphy and awaiting microfrature 2-1-12

Offline smillie

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Re: Fustrated with my OS...
« Reply #12 on: August 18, 2011, 04:54:56 AM »
I'm glad y'all were able to talk and that it was helpful. I hope you can find the time to travel down there. It isn't too awfully far away. It's practically in OK. :)
patella pain began early teens
'94 TTT/LR/VMO adv.
'94 MUA
'10 tried PT again
1/11 scope/hardware removal
4/11 (Finally!) dx medial instability due to LR
5/9/11 LPFL reconstruction scheduled

Offline Driden

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Re: Fustrated with my OS...
« Reply #13 on: September 03, 2011, 09:45:31 PM »
It took my wife 6 hours to drive back to LR with me in the back icing my freshly osteotomied knee.  (I just made that word up). The ride was painless and I was home in time for lunch.
















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