Fusion Long ride to a successful Fusion

[Josephine]

Oh bless you honey! That's not good. I'm so sorry.

 

[Simon]

Jo

Maybe you can track these guys down

Clin J Pain. 2008 Sep;24(7):637-40.
Complex regional pain syndrome (type 1): a comparison of 2 diagnostic criteria methods.

Thomson McBride AR, Barnett AJ, Livingstone JA, Atkins RM.

University Department of Trauma and Orthopaedic Surgery, Bristol Royal Infirmary, Bristol, United Kingdom. Andrew.McBride@Bristol.ac.uk

BACKGROUND: Complex regional pain syndrome (CRPS) is a common problem presenting to orthopedic surgeons or pain therapists, most frequently encountered after trauma or surgery to a limb. Because of a lack of a simple objective diagnostic test, diagnosis is reliant on clinical assessment. Prospective studies have repeatedly demonstrated a higher incidence than retrospective studies, an observation that has been challenged owing to the lack of uniformity of diagnostic criteria across specialties and workers researching the condition. METHODS: A series of 262 adult patients presenting to the Bristol Royal Infirmary with a closed unilateral distal radial fracture were assessed at a mean of 9.47 weeks after their injury by a single clinician (J.A.L.). Each assessment made allowed comparison of the modified International Association for the Study of Pain (Bruehl) criteria for the presence of CRPS with the criteria described by Atkins. FINDINGS: The incidence of CRPS was similar using either criteria (Bruehl 20.61% vs. Atkins 22.52%). Using the Bruehl criteria as a gold standard, there was strong diagnostic agreement (kappa=0.79, sensitivity=0.87, specificity=0.94). Disagreements between the 2 criteria methods were found in 19 patients. The majority of these discordances were due to differences in pain and sensory abnormality assessment. INTERPRETATION: These findings show that the Bruehl and Atkins criteria are basically concordant. The differences reflect only minor variations in the assessment of pain. Agreement between researchers in the orthopedic and pain therapy communities will allow improved understanding of CRPS.

============================
A little old but maybe you can find the authors

Simon



Maybe you can track down
https://news.bbc.co.uk/2/hi/uk_news/england/somerset/4393234.stm

 

[Simon]

Jo, Audrey

Here is the website for the National Inst. Neurological Disorders and Stroke which is part of the National Institutes of Health which is the top research organizations in the US.

On this site is a link to clinical trials which is a good thing. The clinical trials are in the US and world wide


broken link removed: https://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_dystrophy.htm

Here is a site about mirror box therapy. This therapy has been found very good for phantom limb pain and I saw some research articles on the use in CRSP.

Here is a link to an article in the N Engl J Med about a clinical trial on mirror therapy
https://content.nejm.org/cgi/content/full/361/6/634

https://www.mirrorboxtherapy.com/


Simon

 

[Simon]

Jo

Here is a company in England that sells mirrors for mirror therapy. They have a pretty long list of places they sell to. Maybe they can help you find a doctors

Simon

https://www.reflexpainmanagement.com/


Reflex Pain Management Ltd has a growing customer base and as already supplied Folding Mirror Therapy Boxes to the NHS trust listed below.



Abertawe Bro Morgannwg University NHS Trust - West
Anglia Support Partnership
Ayrshire & Arran NHS Trust
Barnsley Hospital NHS Trust
Basingstoke Hospital NHS
Berkshire West PCT
Blackpool, Fylde and Wyre NHS Trust
Bradford Royal Infirmary NHS Trust
Brent Teaching PCT
Centrral Surrey Health NHS Trust
Community Nero Rehab Team (CNRT)
Crieff Community Hospital NHS
Doncaster Royal Infirmary &
East Kent Hospitals NHS Trust
East Lancs Hospitals NHS Trust
Essex Rivers Healthcare NHS Trust
George Eliot Hospital NHS Trust
Gloucestershire Hospitals NHS Trust
Gt Yarmouuth & Waveney NHS Trust
Handforth Health Centre
Heart of England NHS Trust
Imperial College Healthcare NHS Trust
Ipswich Hospital NHS Trust
Kettering General Hospital
Kidderminster General Hospital NHS
Lanarkshire NHS
LTH NHS TRUST
Mid Cheshire Hospitals NHS Trust
Mid Yorkshire NHS Trust
Morriston Hospital NHS Trust
MUSGROVE PARK NHS TRUST
North West Wales NHS Trust
Northamptonshire Heartlands NHS Thust
Northern HSS Trust
Northumbria Healthcare NHS Trust
Nottingham University Hospital NHS Trust
Nuffield Orthopaedic Centre NHS Trust
Oxford Radcliffe Hospitals NHS Trust
Pembrokeshire & Derwen NHS Trust
Plymouth Hospital NHS Trust
Poole Hospital NHS Trust
Premier healthcare & Hygiene Ltd
QEII Health Sciences Centre
Royal Alexandra Hospital NHS Trust
Royal Berkshire NHS Trust
Royal Bolton Hospital NHS Trust
Royal Devon & Exeter NHS Trust
Royal London Hospital NHS
Royal National Hospital for Rheumatology Diseases
Royal National Orthopaedic Hospital NHS Trust
SHEFFIELD CHILDREN'S HOSPITAL NHS TRUST
South Buckinghamshire N H S Trust
South Manchester University Hospital NHS Trust
St luke's Hospital
St Mary's Hospital
Stockport NHS Foundation Trust
Sumerset Coast PCT
Swindon and Marlborough NHS Trust
The League of Friends Stead Primary Care Hospital
The National Hospital for Neuralogy & Neurosurgery
The Pennine Acute Hospitals NHS Trust
United Lincolnshire Hospital NHS Trust
West Kent PCT NHS
Woodend Hospital NHS
Worcestershire Acute Hospital NHS
Wycombe Hospital

 

[Josephine]

Well, thank you, Simon! What excellent work. I had a look at the paper from Bristol Royal Infirmary already but the others I will look in to. I actually worked at about 7 of the hospitals in that list!

 

[wanttoride]

Thank you, Simon! What great information!!!:thmb:

 

[wanttoride]

Hi everybody! I'm back! After a major computer crash, and figuring it wasn't "top on my list" of things to do, I waited to get a new one. So now, I'm catching up with my support team here at Bonesmart!

Since March, I've gained a little bit more in flexion..up to about 115 degrees now, but still can't get the leg straight...stuck at 7 degrees. Being diagnosed with RSD hasn't been a picnic for sure, but I've been lucky that it hasn't gotten worse. I'm still walking with a severe limp, still have pain, stiffness, etc. and have days that I must stay in a recliner to help with swelling, aching and the RSD. Warmer weather has certainly been a blessing, as the cold is not my friend! Still not able to "climb" stairs, and have to take one at a time. I've been nicknamed "Pokey"! Now for the update:

I went for a second opinion 2 weeks ago with a surgeon in Portland Maine. He found it very strange that my left foot turned outward and that I had not had any blood tests, CT scan or special xrays since my TKR surgery (Oct. 2009). We talked for 2 hours, went over history, etc. He said there is no doubt that I have RSD and said I was very fortunate that it was at a low level and had not worsened. He ordered a hip-to-ankle CT scan, blood work and an xray from the waist to my ankle. He noticed that my quad muscle was "dead" on one side also. Now for the verdict:

I went to talk to him about the results last Friday. The CT scan showed that the femoral component is indeed set at the wrong angle, which is causing my foot to turn outward (toes point between 9 and 10'oclock all the time), and my hip to turn inward (which causes me to limp or "lurch", as I call it, and terrible back pain). The kneecap (patella) is set too high also, thus, it is impossible for me to get my leg straight. There are questions as to whether or not a couple of tendons have been attached correctly, and he stated that half of my quad muscle is "dead".

Well isn't this just WONDERFUL!!!! So...now what do we do???

Given that I have RSD and there "is a lot going on in the knee" according to my new surgeon, a total revision is going to be high risk, with no guarantee of the outcome. He can definetely fix the "foot turning outward" problem, and re-attach tendons and ligaments that may be attached incorrectly. Other than that, it's up to my body as to what it will withstand. Without the surgery, I won't be able to walk without a limp, and I will suffer from hip and back pain from the torque on my leg.

After talking it over, my husband and I have decided to take the risk in hopes that I can at least walk "normally" again at some point. Recovery for this will depend on if the RSD is aggravated, and how my body decided to deal with everything, as there is nerve damage from the TKR.

I'm not looking forward to doing this all over again, and the pain, and PT, but I've got to do it because life isn't much fun at the moment. I have a lot of faith in my new surgeon, and we are all hoping for the best outcome that is achievable. My surgery is set for Sept. 22nd. Until then, I'm going to enjoy the summer as best I can, and get ready for many months of therapy....again.

Am I thinking about going back on my first surgeon? The thought HAS crossed my mind. I would think that because my foot turned outward and has stayed that way would have been a VERY STRONG indication that something other than RSD was factoring in. Jo...what do you think?

 

[Josephine]

 

[Josephine]

I agree. He must have been a brain cell or two short not to realise when he examined you! FWIW, it often seems that a revision is less than a primary as most of the major bone cutting has already been done. Which is not to say you won't get any repercussions from the retrim, but I don't think it will be as bad as the first time round.

As for the RSD, you know as well as I do that that's a gamble you're going to have to take in order to get this sorted. What a situation! Are you going to see a lawyer about the first surgeon? A good one (medical one) might just agree that it's verging on malpractice. This kind of thing really shouldn't happen.

 

[Josephine]

btw, would you like me to merge these posts onto your old thread?

 

[Jamie]

I agree with Jo. You should at least talk with an attorney. There was no excuse for your first surgeon to not notice the problem with your leg. I'm so thankful you found a good surgeon to take over. I know what you're planning is a risk, but I do think you are wise to go for it. I will keep you in my prayers for a successful surgery this time.

It's good to hear from you again and I hope you can continue to post.

 

[wanttoride]

thanks Jo and Jamie! Sure...if you want to post to the old thread, that would be fine. Whichever way you feel my posts can be seen, replied to and possible help somebody else ! I will seek some legal advice at some point...not sure if I will before the surgery, as I don't want to be distracted before the surgery. I'll at least make some phone calls, for sure!

 

[Josephine]

Probably better to do it after, Audrey, as then you'll have the evidence of a 'before and after' to back your claim. Oh, and don't forget to take some photographs of your leg and foot before!

Actually, I think I'll leave this where it is. There's a lot of 'off topic' in the other one.

 

[DonnaK]

Wow wanttoride, seems you have had the same bad luck as myself, I had a tkr 28 months ago and am still in alot of pain. I was also told I had rsd. for the rsd I have had 3 nerve blocks, They didn't help me. I didn't feel any pain with these though, it just didn't do any good, He implanted a stimulator next. It hasn't done alot of good unless I take the pain killers with it. Had another bone scan by yet another os an this one says it is loose and separating. Pain management dr says he doesn't think that is correct. So like you I am going to circles. Going to get yet another opinion from another os about the bone scan and then to an appointment with a neurologist then take it all back to the original os. I know exactly how you feel. I would not wish this on Anyone! Sure hope everthing turns out for you. You are a few steps in front of me with all this. I will keep reading your posts to see if everthing turns out good for you. You are encouraging me along the way as well.Take good care of yourself.

 

[wanttoride]

Hi Donna! As Jo can tell you, I wasn't "pro nerve block", as I just didn't feel comfortable with the "might work, might not" stuff. The OS and pain specialist really pushed these on me, plus the spinal cord stimulator, and I just didn't feel comfortable with the uncertainty of whether or not it would work, AND for how long. Then another one, and then another one, etc. etc. My pain was manageable with the Lyrica, but I left the option open just in case the pain worsened. My new surgeon did a special CT scan that went from my hip to my ankle, which checked the alignment of each prosthetic, based on the alignment of my hip. He said it was a CT scan that wasn't ordered very often and that many would not do it. The case had to be "extreme" in order for insurance to cover it. Most OS just order a CT scan of the knee itself, which would NOT show a mis-alignment because there would be nothing to compare it to. Like my first OS said to me over and over again, "everything is in the correct spot and nothing is loose. Well sure....it would look just fine on an xray of just the knee...duh!!!

My new OS told me that doing a bone scan could be done only after 1 year post TKR. He told me that if he could not see anything from the CT scan, that I would have to wait till October this year to have the bone scan. If I had it before, it could read a false positive or a false negative. Luckily, the CT scan showed without a doubt that the femoral component is indeed set incorrectly.

Unfortunately, you cannot go back on an OS for RSD because it is not the fault of the surgeon if your body reacts to surgery/injury that way.

Today, I contacted a medical lawyer who is going to talk about my case with me. Luckily, I have enough paperwork to document that my foot has turned out since having the surgery. My therapist and OS notes state that it is "a concern".

However, my OS told me that once my muscles were strengthened, the muscles would bring it back into alignment. The next time I saw my first OS, I again told him my concern, and he again said the same thing and showed me xrays that "all was fine". The bad thing about office notes made by the OS is that there was a LOT of stuff talked about that aren't in his notes. How convenient, huh? So....I will have to prove that this was a concern from day 1.

My advice to you would be to get copies of ALL your OP notes, office notes, therapy notes, OS notes, etc. just to have for your own files. Be sure to get copies of your consent forms, too. And...when in doubt, or you have questions, ask, ask, ask, and ask again. I would ask your OS to look into this CT scan that goes from the hip to the ankle and see if that is an option for you, since you still have questions. Have you had blood work to rule out infection or an allergice reaction to your prosthetics? Cover all your bases.

How severe is your RSD? Are you taking meds for it? What type of symptoms do you have?

 

[Josephine]

Oh! Déjà vu! You all just had this conversation in another thread!

 

[wanttoride]

LOL! I know...I just didn't know which one to post to....so I did both!

 

[wanttoride]

Hello all! Well....just got off the phone with the medical attorney and I have a consult this Monday morning. If for nothing else, I can at least get some perspective on whether or not I have a possible case. I'm really doing some soul-searching about this, as I'm not one look for an opportunity to bring anybody to court. However....because I know how much both myself, my family, my friends and my PT team have questioned this "toes pointing outward" problem since pretty much day 1, I feel that our voices have not been heard and concerns were basically "brushed off" as RSD generated. I'm nervous, but I know I need to do this....not only for myself and my piece of mind, but for everybody else.

My main concern is my health and my family and how we are going to cope with yet another operation and months of rehab and pain. We've done it before...I know what to expect....and I'm ready and positive! :thmb:

I've got all the documentation, op notes, office notes and CT scan to prove that this was a concern/problem back in October 2009, and that indeed the angle of the prosthetic is incorrect causing hip/leg/back pain and the inability to walk without lurching and limping. I've got photos, but I think the CT scan is my best bet as to proof. We'll see where this goes.....if nowhere, well....at least I know I put the issue on the table . Has anybody else had to seek legal advice regarding a TKR done wrong?:fdbk:

 

[Josephine]

If nothing else, that guy needs to be held to account for the botch up. He should be free yo be let loose on any more unsuspecting patients.

 

[Ibizabreezes]

I'm wondering.....if the nerve block only lasted for a day or two, why would she have had 11 of them? What would have been the reason for having so many? Whereas a nerve block isn't permanent by any means, were you told that the nerve block WOULD be permanent? Or...were you told that a nerve block would "get rid" of the RSD?

Wantto, I am SO glad you pointed out the futility of nerve blocks for most RSD!

Thank you. Thank you!

I have had crps or rsd for 6 years now. Most of my problems were directly after injury to my R sciatic nerve. Early on, I was referred to a pain clinic where I had a total of 2 spinal blocks. The first made my R foot feel a little more numb than usual - even that small effect lasted only, maybe an hour.

The second procedure actually caused the rsd to flare within 24 hours of my receiving it. I was in so much pain I recall being home that afternoon, crouched on the floor crying and pounding the (carpeted...fortunately) floor with my fists.

I finally went to a neurosurgeon I knew well - someone I trust immensely. After muscle and nerve conduction tests that he ordered, I was admitted to the hospital for further testing, including an MRI of my Right pelvis and leg....suddenly, I was surrounded by a team of PT's, a neurologist, my PC doctor...a coordinated group of people. Finally! I was put on Neurontin, Oxycontin and Oxycodone, along with Zoloft.

After that admission and finally getting the pain control I needed I quickly went from crutches to a leg-brace to walking with no brace.

I honestly think the spinal injections are nothing more than a moneymaker for the anesthesiologists who do them. When you have rsd, they just don't make sense.

It has been 6 years since my injury and I now am trying to find a new doctor to manage my pain medicines. I have decided to search for rsd specialists who are NOT anesthesiologists (because that means they want to give you injections, not pills). Pain medicine has a place in this world. Over the years I have weaned down the dose of oxycontin, but I still need it and the neurontin to be functional and just about normal.