Need advice - what would you do?
 

Hi there;
I am asking you guys for your advice on how to proceed with dealing with my ortho doc - I am so frustrated I am not sure what to do. quick background: I just had my open debridement for scar tissue on my right knee. I had a total knee replacement done last year - failed and never regained my flex or extension of my knee (around 80 and 15) then came down with RSD in it. After much contemplation and talking to docs - I went ahead with the surgery a couple of weeks ago with increased pain meds and such and I believe it was a success (no RSD flare) except my range is still no better at this point yet. My problem is my surgeon's attitude lately. While in the hospital I fell (yes, what luck!) but didn't get seriously hurt, except bruised severely my tailbone. Dr. came in the next morning and asked "how are you feeling today?". Well, I told him my tailbone hurt and my knee had a slight burning pain I usually feel with the RSD. His response was - "You can't dwell on the pain all the time. Maybe you should take up a hobby such as knitting, or puzzles or such". Ok, I know I cant sit on the couch 24/7 and just think about my pain - which I dont. But I was sitting in a hospital room, just had surgery, I had fallen, and he did ask how I felt! I couldnt believe what came from his mouth. I just looked at him! Yesterday I had my post op appt with him. We were discussing PT - so far I have been having in-home but was needing to switch to outpatient. I told him I knew of one close by but had called them inquiring if they had a therepist with knowledge of RSD. My ortho doc seemed upset I had done this. He stated it was not important that the PT had knowledge of RSD - it was the therepy for my knee replacement they needed to be concerned with and I shouldn't be so picky! Again - my mouth dropped open and I didn't say anything. I think the pain meds are making my brain work slower! hehe. He also stated that the rehab on the knee should be my main priority - not thinking about the RSD! I went to bring up my tailbone - and he just stated that he was sure it was doing just fine! He also asked me how my hobbies were doing! Am I not right in thinking I should have someone with knowledge of RSD working on my knee? Thru the last 11 months of PT - I have not always had a therepist with this knowledge and they have mistakenly done things not to my benefit (insisting on using ice, cranking on my knee to the point of tears time after time, etc). I want to do everything right this time to make the most out of my rehab. This ortho dr is the same one that referred me to the pain management dr who made the diagnoses of RSD. But he still always writes on documents "suspected RSD" - even though the pain management and anethesia docs have diagnosed me with RSD. He always acts like maybe I am not in "that much pain". I am at the point I feel like I should be looking for a new ortho doc... but maybe I am on too much pain meds and not thinking right - thats why I need your input! The dr is an older physician, has always been nice until these instances. I am not sure how hard it would be to find a new ortho doc to take my case at this point. oh - and the doc also stated, as he was taking my staples out, that he would be on vacation for a whole month starting next week and wanted to know if I thought I would be having any problems while he was gone...?????..... I just told him I would get back to him! Help - I feel like I am loosing my mind on this! What would you do? :confused:

OMG my darling. This guy's a menace! I would highly recommend that you send a letter with these comments to the Director of Medicine at the hospital and the CEO. Such an attitude is unforgiveable and I can assure you (especially with an inpatient fall) that he will be spoken to about it. You may request (yes, directly to him) that he refer you to someone in pain or neuro as a consult because obviously he knows not one thing about RSD and therapy. There are obviously different things that can be done for your knee but obviously must be done in the light of your RSD. I tend to be outspoken, I know, but if he says one more syllable about a hobby, recommend a good book on RSD for his vacation light reading. When my PMR doc said "you know, we all have to live with some level of pain." I asked him what pain he had chronically. I swear, I want him to put a clothespin on his $*^) for a couple weeks and not want to take it off. Hello!
Anyway, I am a nurse (thus the total disregard for most docs) and I can tell you that speaking to hospital management about such harsh and cynical speech at the bedside [I]especially after an inpatient fall that you could take them to town on will be discussed.
I hope this helps!
LoriLee:hug:

You definitely need a new ortho doc!!!! Not one person in the world with rsd can do anything, especially pt, without it being a priority! You're not wrong in wanting to make sure you make the most of pt. His naive, and IMO, condescending attitude, toward you is enough to make my blood boil and want to write him a very long letter letting him know exactly what I think of him!!!! Any fall, even a seemingly inconsequential one, can be a BIG deal for an rsd'er. I should know as I've had many, very minor incidents in the past 6 years. LOLOL I tend to be a bit clumsy at times.

I agree with LoriLee that you should report him to the hospital and anyone else that's appropriate.

As for the hobby thing.....I keep myself busy doing many hobbies and no matter what I do rsd isn't far from my mind. It does help keep my mind of my body and that in turn helps my pain level most days but come on.....*snorts* No matter what I do rsd is always there and that's just the way it is with this crud!! First thing on my mind when I wake up and the last thing on my mind when I go to sleep.

You're looking out for yourself and doing everything right. Don't let this ignorant "doc" and appalling lack of knowledge make you doubt yourself!!

BIG Hugs,

Karen

To me is sounds like he is "old school" - how close to retirement is he?
He does sound like he is not wanting to learn new things as is needed in the case of "rare" and unusual conditions such as RSD.

I would really do some searching around for a new doc while he is on his vacation.

Was the fall and tailbone injury noted by hospital staff?
I would make sure that is done asap - just in case something comes of it.

And good PT with advanced knowledge is important for special conditions!

OMG - I am so sorry you had to go through all of that, that is so not right!! I agree with what the others have said, please find another Ortho that has experience in RSD and is actually compassionate!!

You don't deserve to be treated this way and one of the most important things with RSD is that you have a Doctor who you can trust. We weren't very happy with my PM Doctor a few months ago so we asked for a referal somewhere else and I DO believe it helped, even though I still have to see him as my other doctor is 3+ hours away.

For your Ortho to say that you need to find a hobby is horrible - I think someone needs to tell him that some hobbies we can't do because we are either too tired and fatigued and/or the pain stops us from being able to do it!! I make cards and I like doing it but to be honest - it doesn't take the pain away as it's still there, the only thing it does is stop me from focusing on it that much as i'm trying to concentrate on something else! I agree that we can't just sit and think about our pain all the time but not many of us do that and we are all entitled to pity-parties when we need one!!

I agree with Jo also that you really need a PT that specialises in RSD and other similar illnesses. My PT's specialise in RSD and Chronic Pain conditions but they don't see that many people with RSD so sometimes they say that the symptoms I am having can't happen because they have never seen them before!! They have got better and now believe everything that we tell them but a few months ago, they wouldn't believe us and it was always us that had to go on the computer and see if others had those symptoms. I would hate for you to see a PT that doesn't know anything about RSD and make you worse!

Please keep us all updated when you can - I am just so mad that you had to deal with all of that!

Sending you many pain-free hugs,
Alison

I agree with lorilee-its outrageous! Horrible treatment
 

Switch doctors I did twice rigth in the middle of treatment. It was worth it. Good luck.

Update -
 

Thanks everyone for your advice & support. I did go ahead and had my first PT session with the therepist I had inquired about that has RSD knowledge. I am glad I did! He was so nice and knowledgable about RSD and has had quite a few patients he has treated. We will start off slow, then have 1 treatment a week in the therepy room and 1 treatment a week in the pool. I am excited to try this pool therepy as I have not had it yet and hoping it might work well. He even had paperwork on mirror image treatment for RSD and had me try it. As for my Ortho doc - I am going to start looking for another one. He is an older dr, but always seemed nice until lthis surgery. I think he doesn't quite believe in RSD - being in the "old school" and therefore is not quite sure what to do with my treatment and feels embarressed he failed. I was just very hurt that in the hospital he felt that my pain was not worth acknowledging when he told me to get a hobby. . Does anyone else feel that they always have to be justifying their condition to people, such as why they are on so many meds, why they have so much pain, etc? My surgery went well in the aspect of RSD not flaring, and scar tissue removed, but it has been awful in the aspect of how people view you as a person that has RSD. On top of how my ortho treated me - another doc I saw yesterday was just as bad - seems like I'm on a roll! My primary dr was on vacation - so I saw another as I have been running a fever and they thought I should be seen to rule out infection. As he reviewed my records, he stated "Why on earth are you on Methadone!???" I was a little dumbfounded as he knew I have a pain management doc. I simply told him that Methadone was one of the best nerve pain medicines there is- something I thought he should already know! Then he was quizing me on my dose - stating he could not belive I take so much pain meds! He made me feel like he thought I should be down on the street corner dealing drugs! I calmly informed him I am under my pain management docs directions for meds and that my pain is worse than any other pain I have ever had. I then stated if he would like to call my pain man. doc, I had him number he could call right then. He stated that it was ok, that wasn't necessary! I am really tired of stupid drs at this point. I left there crying - I felt like I am doing something wrong by taking these meds. I did call my pain management doc and discussed with him this dr - they are from two different facilities. He told me that this dr was apparently "not very intelligent regarding meds!" and told me not to pay any attention. As for reporting them, I have talked to my primary dr (who works with him) and told her I would not see the covering dr ever again and told her why. She apologized and stated she would have a serious talk with him. As for my orth doc - I don't have the energy emotionally to make waves about him to the hospital. I don't plan on seeing him again. I just hope I will find a dr to take me on at this point. I just feel so depressed since this all took place, as if no one really understands the pain or how it effects me and that I should be embarresed I have this condition. I know people here understand, since you have to deal with RSD yourselves. Sorry to ramble - I'm just still so upset. Thanks for listening and being there.

OK, Lindkaye, I know I may get a reputation as being a smart-$(% with the docs, but I guess it's my job to be. One thing that they hate and WILL shut them up is something like "Oh, I'm surprised that you're not familiar with that dose being used for RSD." Nothing scalds them like being made to feel put on the spot and defensive-JUST LIKE THEY DO TO YOU regarding your pain meds. Secondly, I'm glad that you are standing up for yourself. You will find the doc for you. You would be surprised how many melon-heads made it through school or are so worried about their own life to any longer give a crap about yours. Accept nothing but someone who listens to you and knows how to find is butt without a book, then hold on-he will open doors for you to "like" docs.
I think of you often-I always wonder how people who don't work in medicine ever make it through.

After a few sessions with this new PT - if all is going well, and you feel he knows about RSD, and is helping you --- ask this PT for a doctor recommendation. The PT's know who's who in Docs!!!

Best of luck to you with this!

Sorry to get in here late...this is a great thread.

I too was made to feel like a non-compliant whining patient by my ortho surgeon. He knew I had RSD but went into denial and had no understanding of the condition recommending the wrong treatments.

It is inspiring to see others speak up for themselves in the face of such bullies. I wish I had done more of it in the beginning.

I'm really happy to hear that you found a therapist with experience with RSD. I saw a rehab doctor after I fired my surgeon and he was able to send me in the right direction (mostly), I did reject some of his recommendations and opinions but he did much more diagnostic work to help determine the best course of treatment. Certainly more than a surgeon would have ever done. Just think of it, all they are trained to do is to cut you open and fix what they think needs to be fixed.

MsL