Slim
new member
wanttoride,I hope your knee gets better soon,prayers sent for your healing.
Fusion Long ride to a successful Fusion
- Thread starter wanttoride
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Josephine
NURSE DIRECTOR EMERITA
United KingdomThanks, slim - nice to meet you!
Want, today I heard from the hospital in Newcastle, the local one. The nurse specialist in the Chronic Pain Management Unit phoned me back and said the team has dealt with a lot of CRPS patients and would be very happy to see my sister! So I have sent her off to see her doctor and get a referral ASAP. Hopefully we should have an appointment within couple of weeks. I'll keep you posted.
And I have had another inspiration: I am going to write a book about my sister's life and her experience with this and how she has been treated like dirt by the medical profession all along the line. It may end up having to be self-published but I am determined this is going to be an opening thing.
I am also going to a meeting with the Patient's Association in London next week to talk with them about a bit of research I plan to do, about bad pain management after TKR, and I shall bring this up too.
Gosh! I haven't been fired up like this about anything for ages!
Want, today I heard from the hospital in Newcastle, the local one. The nurse specialist in the Chronic Pain Management Unit phoned me back and said the team has dealt with a lot of CRPS patients and would be very happy to see my sister! So I have sent her off to see her doctor and get a referral ASAP. Hopefully we should have an appointment within couple of weeks. I'll keep you posted.
And I have had another inspiration: I am going to write a book about my sister's life and her experience with this and how she has been treated like dirt by the medical profession all along the line. It may end up having to be self-published but I am determined this is going to be an opening thing.
I am also going to a meeting with the Patient's Association in London next week to talk with them about a bit of research I plan to do, about bad pain management after TKR, and I shall bring this up too.
Gosh! I haven't been fired up like this about anything for ages!
Boy, a person misses a day on the forum and LOOK WHAT HAPPENS!!! I'm so happy for BOTH you ladies!!!
Want...you sound like a totally different person. I know it will take some work to stay in that calmer mode, but I have faith in you. It will be easier now, knowing what you know. Your PCP is awesome and I'm thankful that she reinforced Jo's advice. You have a path!!!
And Jo...my goodness....this is the best news ever about the specialists you found! And the book idea is fantastic too.
What a day brightener this whole thread is now!!! God bless you both!
Want...you sound like a totally different person. I know it will take some work to stay in that calmer mode, but I have faith in you. It will be easier now, knowing what you know. Your PCP is awesome and I'm thankful that she reinforced Jo's advice. You have a path!!!
And Jo...my goodness....this is the best news ever about the specialists you found! And the book idea is fantastic too.
What a day brightener this whole thread is now!!! God bless you both!
OP
OP
wanttoride
senior
Jo...I just don't know what to say.....I'm so happy that you have an appt. for your sister, and that you have the drive that you do! How can we make sure others on other "threads" are aware of this subject? I don't know how these forums work. I can only imagine how many are out there!
I can only imagine how much a book on this subject would help others....especially since it's a real story, and not just an article in a journal or web page. You go, girl!
Thanks Jamie! I do feel much better. I have my appointment with my OS tomorrow at 4pm, so we'll see where we go from there. Shame on you for missing a day! :lvros:
I can only imagine how much a book on this subject would help others....especially since it's a real story, and not just an article in a journal or web page. You go, girl!
Thanks Jamie! I do feel much better. I have my appointment with my OS tomorrow at 4pm, so we'll see where we go from there. Shame on you for missing a day! :lvros:
OP
OP
wanttoride
senior
Wow! I'm impressed! Well...I'm off to see my OS this afternoon and go over this new plan of action. I'm nervous and anxious all at the same time. My main question is going to be how we are going to get this leg straight. It's spend waaaaay too long at approx. 12 degrees, and my foot is hurting from not being able to walk correctly. I may be jumping the gun here, but I'm wondering....is it possible to "cast" the leg in a straight position for a week or two? Would doing this cause my leg not to bend anymore?
Honestly, I would rather have my leg straight and then work on flexion. All I have is time now, and I have to take things slowly, so I'm thinking..."why not"? I've seen devices that help get extension...ones that you sleep with on. Any comments or experiences with these?
I got my op notes from the surgery done on Oct. 5th in the mail yesterday. Oh...I also got somebody elses blood work results too. Nice, huh??? My OS's secretary isn't the brightest bulb in the package, that's for sure. My OS will hear about this, for sure!
There was a paragraph in my UAM op notes that stated that when they extended my leg, it went to 3 degress, but "bounced back" to 10 degrees. Flexion was achieved to 130 degrees.....Gotta ask him about that, too. What would have caused it to bounce back to the 10 degrees if everything was relaxed?
Here are a couple of exerpts from my op notes. Jo..can you translate for me? I understand some of it, but there are words that are just waaaay over my head!
1. .....inspection of the knee revealed marked degenerative changes of the patellofemoral articulation with complete loss of athe articular cartilage. There were also several small areas of chondromalacia in the mid weight bearing portion of the medial femoral condyle, also somewhat posteriorly and a slightly smaller area of the lateral femoral condyle. Because of those areas, I did not feel she would be a good candidate for patellofemoral arthroplasty.
2. Procedure: Left total knee arthroplasty utilizing Zimmer gender solutions Natural Knee flex system with a size 1 femoral and tibial components and a size 0 patella and a 9mm prolong polyethylene congruent inset.
3. ....satisfied with the componeent sizing, stability ad soft tissue balancing, the trial components were all removed and preparation was made for placement of the final implants. Bone paste was prepared from aspirate and reamings and applied to the cancellous surfaces. Tibial base plate was impacted and appropriate length 6.5 cancellous screws inserted with good purchase. The 9mm Durasul polyethylene congruent insert was then positined, impacted and checked to insure it was fully seated and secure. Femoral component was impacted. A good press-fit was obtained. Patella was seated with the patellar clamp. With all components in place, the knee was reduced. Range of motion and stability were checked again and found to be excellent as they had been with the trial components.
Since I'm feeling very at home here with the forum, please call me "Audrey". That's me! :D
Honestly, I would rather have my leg straight and then work on flexion. All I have is time now, and I have to take things slowly, so I'm thinking..."why not"? I've seen devices that help get extension...ones that you sleep with on. Any comments or experiences with these?
I got my op notes from the surgery done on Oct. 5th in the mail yesterday. Oh...I also got somebody elses blood work results too. Nice, huh??? My OS's secretary isn't the brightest bulb in the package, that's for sure. My OS will hear about this, for sure!
There was a paragraph in my UAM op notes that stated that when they extended my leg, it went to 3 degress, but "bounced back" to 10 degrees. Flexion was achieved to 130 degrees.....Gotta ask him about that, too. What would have caused it to bounce back to the 10 degrees if everything was relaxed?
Here are a couple of exerpts from my op notes. Jo..can you translate for me? I understand some of it, but there are words that are just waaaay over my head!
1. .....inspection of the knee revealed marked degenerative changes of the patellofemoral articulation with complete loss of athe articular cartilage. There were also several small areas of chondromalacia in the mid weight bearing portion of the medial femoral condyle, also somewhat posteriorly and a slightly smaller area of the lateral femoral condyle. Because of those areas, I did not feel she would be a good candidate for patellofemoral arthroplasty.
2. Procedure: Left total knee arthroplasty utilizing Zimmer gender solutions Natural Knee flex system with a size 1 femoral and tibial components and a size 0 patella and a 9mm prolong polyethylene congruent inset.
3. ....satisfied with the componeent sizing, stability ad soft tissue balancing, the trial components were all removed and preparation was made for placement of the final implants. Bone paste was prepared from aspirate and reamings and applied to the cancellous surfaces. Tibial base plate was impacted and appropriate length 6.5 cancellous screws inserted with good purchase. The 9mm Durasul polyethylene congruent insert was then positined, impacted and checked to insure it was fully seated and secure. Femoral component was impacted. A good press-fit was obtained. Patella was seated with the patellar clamp. With all components in place, the knee was reduced. Range of motion and stability were checked again and found to be excellent as they had been with the trial components.
Since I'm feeling very at home here with the forum, please call me "Audrey". That's me! :D
Audrey, so glad to know your REAL first name!!! Somehow calling you "want" just didn't seem right all this time. I'm glad you feel so comfortable here.
Jo will have comments for sure on your op notes, but it looks like you had a pretty straightforward and normal TKR to me.
There are braces to assist with the straightening process. Your OS may suggest using one. I really don't know too much about them other than being aware that one or two people here on the forum used them.
I would be surprised if anyone would put your leg in a cast. The whole purpose of recovery is to be moving the joint - extending and flexing. There are several exercises to be done for improvements in extension and if you aren't doing them now in therapy and at home every day, you should be. They have been mentioned on other threads, but if you need me to I can describe them again. Just like the entire recovery process for you, improvements in extension are going to take time.
Jo will have comments for sure on your op notes, but it looks like you had a pretty straightforward and normal TKR to me.
There are braces to assist with the straightening process. Your OS may suggest using one. I really don't know too much about them other than being aware that one or two people here on the forum used them.
I would be surprised if anyone would put your leg in a cast. The whole purpose of recovery is to be moving the joint - extending and flexing. There are several exercises to be done for improvements in extension and if you aren't doing them now in therapy and at home every day, you should be. They have been mentioned on other threads, but if you need me to I can describe them again. Just like the entire recovery process for you, improvements in extension are going to take time.
OP
OP
wanttoride
senior
I was wondering why he said the " " would not be a good candidate for this at this time.
Also wondered basically, what all this meant before they did the implant.
Are you familiar with the product?
Gotta run....heading to OS....will be back later! Wish me luck!
Also wondered basically, what all this meant before they did the implant.
Are you familiar with the product?
Gotta run....heading to OS....will be back later! Wish me luck!
Josephine
NURSE DIRECTOR EMERITA
Purely tension in the ligaments. You can't relax the natural tension - it's like rubber bands but it also showed that there is a little extra tension or stiffness than is wanted. Usually it should 'bounce back' to 0 or +5.
I'm confused by this because he did do a patellofemoral arthroplasty - otherwise known as a patellar button! I'll be interested to know what he meant by this.
That in blue is just the name of the implant. Bit of a mouthful but we generally just refer to it as the Zimmer Gender! Size 1 is the smallest as is the size 0 patella button whilst a 9mm insert is about average. Yes I am familiar with it, and as I have said many times before, all prostheses are pretty much of a muchness. So far as the patient is concerned it really doesn't matter too much which one they get, they wouldn't know the difference in the end anyway. The difference is principally for the surgeon as each one has slightly different tools and thus it comes down to which the surgeon feels comfortable using.
When we do a TKR, after preparing the bone, we use trial implants (i.e. not the real things) to test which sizes are most suitable. As a passing matter of interest, I could always tell which it was going to be just by eyeballing it so I'm sure surgeons can too! Anyway, the insert trials are all colour-coded according to size so we make sure we get the correct ones, meaning small, medium or large. Then we select first the size for the femur and that dictates which range of trials we use. Generally a medium femur also takes a medium tibial tray which are applied to the bone. Then the insert is trialled starting with something moderate like a 9mm. The whole, including a button if being used, is assembled in the joint and the leg put through a range of movement to make sure it is properly tensioned. If it seems tight, a smaller insert is tried, if loose, a larger one, until the function of the joint is deemed to be satisfactory.
Once this is decided, then the actual implants are dispensed onto the trolley and unpacked. This means the implants are exposed for the minimum amount of time and handled as little as possible to prevent contamination. While the nurse is doing this, the surgeon will clean the joint and cut bone ends using a pulse lavage system (power washer to you!) to ensure the area is clean of debris and excess blood, fat and fluid. He will then dry it as well as he can with suction and swabs.
When using an uncemented prosthesis, the surgeon will utilise all the bone material to pack around the cut surfaces of the bone (cancellous bone) in order to maximise the fit between bone and metal. This is the 'bone paste' he mentions.
I'm intrigued he inserted the femoral component last as I've not seen that done before. Usually it's tibial tray, femoral component and then tibial insert but I doubt it makes much difference.
He doesn't mention using bone cement for the patellar button but I cannot imagine why else he would need to use a patellar clamp if not to hold the button in place whilst the cement hardened. But again, is not really important. The important bit is the last sentence which confirms that "range of motion and stability were checked again and found to be excellent as they had been with the trial components". That's the clincher.
Otherwise, from those small excepts, I see no evidence that he had any problems whatsoever and it was actually a perfectly routine and satisfactory procedure.
Pat29627
post-grad
My daughter recommends https://rsdhope.org/ for RSD info. I don't know if you mentioned that one.
A cast would be painful, wouldn't it? My daughter can't stand tight socks, but loose ones hurt, too....she has a very hard time with finding socks and shoes.
I'd say to go slow and easy with exercise. You've got so much to deal with .....post surgery pain plus the RSD pain. At least the surgical pain will get much better with healing.
A cast would be painful, wouldn't it? My daughter can't stand tight socks, but loose ones hurt, too....she has a very hard time with finding socks and shoes.
I'd say to go slow and easy with exercise. You've got so much to deal with .....post surgery pain plus the RSD pain. At least the surgical pain will get much better with healing.
OP
OP
wanttoride
senior
Good Morning! I went and saw my OS yesterday and my wonderful daughter, Michelle went with me. She's married, 25 and has her own horse, too. She's my best friend, and I love her with all my heart. She's been worried about her "Mommy", and wanted to talk to the OS and ask her own questions.
My OS spend 1.5 hours with us! My appt. was at 4:00, and we didn't leave till well after 5:30. Here are some of the highlights:
1. I am his only RSD/CRPS patient. He says I'm "special"! (my daughter chuckled)
He's seen in his 25 years of practice only one other case, which was after a shoulder surgery, but not to my extent. It was only "suspected" RSD, and this patient didn't have all the classic symptoms.
2. He was glad that I "experimented" the past week with not having aggressive PT. He said patients just have to find out for themselves, rather than being told. I agreed.
3. Regarding getting my leg straight: a. it might...MIGHT....be possible to go in and shorten the fibia bone, but he wasn't crazy about doing so. He said any invasive procedure can fire up the RSD even more, and cause a major setback, and/or make the RSD worse. Also, this procedure wasn't a "cure" for getting the knee straight.
4. It is possible to "cast" the leg for 2-3 weeks in a straight position. However, it would be a good possibility that when I woke up from anesthesia, I would be screaming in pain, due to the RSD being forced, and the cast would have to be cut off immediately. This could also cause the RSD to fire up and become worse.
5. To just take things slow. He said I WILL get more flexion, but it will take some time. Could be 3,6,9 months, or longer. But I WOULD get more flexion. I would basically have to surrender to the RSD, and baby it. Little by little, I can gain degrees. Same with extension. He said if I can get to 5 degrees, I can survive with that. I would obviously walk with a limp, but it would be better than having to use crutches all the time.
6. He still thinks that the fall I took from my horse last May COULD be a contributing factor in the RSD/CRPS. Not the reason...only a contributing factor because of the disc being injured. Note: My pain specialist said that the disc had healed and the nerves surrounding the disc were all fine. This is where my OS and Pain specialist disagree. I have an appointment with the PS next week, so I will DEFINETELY have him clarify this, as he was the one that read the MRI.
7. No more "in home health care" and PT! YIPPPEEEEE!!!!! I can do what I need to do on my own at this time. He said I should start walking on the treadmill each day, starting at 5 minutes and increasing. I can't wait! I love my treadmill!!!!
8. On the bad side, I am out of work "indefinetely". He said I have to concentrate on me, and if I'm worried about work, I'm not doing the job I have to do right now. He said if I were to go back to work and had to perform my duties, I wouldn't last an hour....and he's right. Maybe in time, I may be able to, but not for a while. He told me I'd probably be looking into Social Security Disablilty. I hear this is a nightmare! Any thoughts or experiences in this department would be GREATLY appreciated!!!!
My daughter started to cry at the end of the visit, and told him "I just want my Mom back".
My OS spend 1.5 hours with us! My appt. was at 4:00, and we didn't leave till well after 5:30. Here are some of the highlights:
1. I am his only RSD/CRPS patient. He says I'm "special"! (my daughter chuckled)
He's seen in his 25 years of practice only one other case, which was after a shoulder surgery, but not to my extent. It was only "suspected" RSD, and this patient didn't have all the classic symptoms.
2. He was glad that I "experimented" the past week with not having aggressive PT. He said patients just have to find out for themselves, rather than being told. I agreed.
3. Regarding getting my leg straight: a. it might...MIGHT....be possible to go in and shorten the fibia bone, but he wasn't crazy about doing so. He said any invasive procedure can fire up the RSD even more, and cause a major setback, and/or make the RSD worse. Also, this procedure wasn't a "cure" for getting the knee straight.
4. It is possible to "cast" the leg for 2-3 weeks in a straight position. However, it would be a good possibility that when I woke up from anesthesia, I would be screaming in pain, due to the RSD being forced, and the cast would have to be cut off immediately. This could also cause the RSD to fire up and become worse.
5. To just take things slow. He said I WILL get more flexion, but it will take some time. Could be 3,6,9 months, or longer. But I WOULD get more flexion. I would basically have to surrender to the RSD, and baby it. Little by little, I can gain degrees. Same with extension. He said if I can get to 5 degrees, I can survive with that. I would obviously walk with a limp, but it would be better than having to use crutches all the time.
6. He still thinks that the fall I took from my horse last May COULD be a contributing factor in the RSD/CRPS. Not the reason...only a contributing factor because of the disc being injured. Note: My pain specialist said that the disc had healed and the nerves surrounding the disc were all fine. This is where my OS and Pain specialist disagree. I have an appointment with the PS next week, so I will DEFINETELY have him clarify this, as he was the one that read the MRI.
7. No more "in home health care" and PT! YIPPPEEEEE!!!!! I can do what I need to do on my own at this time. He said I should start walking on the treadmill each day, starting at 5 minutes and increasing. I can't wait! I love my treadmill!!!!
8. On the bad side, I am out of work "indefinetely". He said I have to concentrate on me, and if I'm worried about work, I'm not doing the job I have to do right now. He said if I were to go back to work and had to perform my duties, I wouldn't last an hour....and he's right. Maybe in time, I may be able to, but not for a while. He told me I'd probably be looking into Social Security Disablilty. I hear this is a nightmare! Any thoughts or experiences in this department would be GREATLY appreciated!!!!
My daughter started to cry at the end of the visit, and told him "I just want my Mom back".
Josephine
NURSE DIRECTOR EMERITA
Well, that was an awesome visit! Lots of questions answered, reassurances and encouragement given. You must be well pleased. I am pleased for you. Of course, it doesn't actually solve anything but it's a good step forward.
Josephine
NURSE DIRECTOR EMERITA
Been in contact with the local RSD support group but it doesn't exist any more. Nevertheless, the lady was happy to talk with me and told me that some people have found hyperbaric oxygen to be useful. Even gave me the number of an MS charity not too far away that has a chamber which can treat 6 people at once. I'm looking into that. She also said there was some help with lidocaine patches which have recently become available in the UK. But not to bother with any oral meds as they just plain don't work! Think we already sussed that one! She also has a website broken link removed: https://www.rsd-arena.co.uk which seems excellent.
On the down side, I had a letter from the Professor at Newcastle but he just said "I cannot claim to be an expert on RSD. I am not sure I am the most appropriate person to see your sister although I do appreciate the frustration you both must have. I am sorry that I am not able to help on this occasion."
So that's that. I am, mostly, back to the drawing board again.
On the down side, I had a letter from the Professor at Newcastle but he just said "I cannot claim to be an expert on RSD. I am not sure I am the most appropriate person to see your sister although I do appreciate the frustration you both must have. I am sorry that I am not able to help on this occasion."
So that's that. I am, mostly, back to the drawing board again.
OP
OP
wanttoride
senior
Ugh! How frustrating....an area that we all seem to be in. Hard to get/find answers, and no experts in the field. I've heard of the lidocaine patches, and I'm going to ask the Pain Management Dr. about those.
I don't know as I would say that oral meds don't work. I would imagine it would depend on the severity of the person's symptoms. I do feel that the Lyrica is helping me with some of the symptoms. I started this drug therapy 4 weeks after my TKR, so that may have been a key to it working for me. It has helped me, personally, with the coldness in my foot, the numbness in my last 3 toes, and has dulled the often "fiery tingly" feeling that I get around the knee and below. I would compare it to touching your finger to a steak knife, vs touching your finger to a butter knife. You know the feeling is there...just not to the extreme.
Like I've said in previous posts, I did NOT like the effects the first couple of days, but I had to work through it, and I did. Lyrica takes time to get into your system, but the first few days can make you dopey and feel like a "cotton head". It's a new drug, so there is NO generic for it yet. Unfortunately, because it's VERY expensive. About $375 for 100 75mg pills. I am curious to see what would happen if I tapered of the Lyrica, and will ask the Pain Management guru about this next week. He wanted me to get to (4) 75mg pills a day, but I'm only taking 3 a day. 4 pills was too much, even after trying for days....just couldn't get that "cotton head" sleepy feeling to go away.
I think I'm very lucky that the Lyrica is working for me, along with the pain meds. There are times that I ache really bad, and have those darn stabbing pains, but then again, there are days that I know the pain is there, but I can go about my daily routine without making it the main focus of my day. Mind over matter? maybe.....
I just feel sooo badly for those that can't wear socks or pants because the feeling and pain is so extreme and nothing is helping. :cnsl:
I don't know as I would say that oral meds don't work. I would imagine it would depend on the severity of the person's symptoms. I do feel that the Lyrica is helping me with some of the symptoms. I started this drug therapy 4 weeks after my TKR, so that may have been a key to it working for me. It has helped me, personally, with the coldness in my foot, the numbness in my last 3 toes, and has dulled the often "fiery tingly" feeling that I get around the knee and below. I would compare it to touching your finger to a steak knife, vs touching your finger to a butter knife. You know the feeling is there...just not to the extreme.
Like I've said in previous posts, I did NOT like the effects the first couple of days, but I had to work through it, and I did. Lyrica takes time to get into your system, but the first few days can make you dopey and feel like a "cotton head". It's a new drug, so there is NO generic for it yet. Unfortunately, because it's VERY expensive. About $375 for 100 75mg pills. I am curious to see what would happen if I tapered of the Lyrica, and will ask the Pain Management guru about this next week. He wanted me to get to (4) 75mg pills a day, but I'm only taking 3 a day. 4 pills was too much, even after trying for days....just couldn't get that "cotton head" sleepy feeling to go away.
I think I'm very lucky that the Lyrica is working for me, along with the pain meds. There are times that I ache really bad, and have those darn stabbing pains, but then again, there are days that I know the pain is there, but I can go about my daily routine without making it the main focus of my day. Mind over matter? maybe.....
I just feel sooo badly for those that can't wear socks or pants because the feeling and pain is so extreme and nothing is helping. :cnsl:
OP
OP
wanttoride
senior
Unbelievable! One of my best friends from high school contacted me yesterday. She said she saw her Dr. for what she thought was carpel tunnel. She was diagnosed with RSD/CRPS. It is in her hand and wrist from when she tore a tendon about 5 years ago. Needless to say, she's been talking to me a lot the past day. How is everybody else doing?
OP
OP
wanttoride
senior
Well...just got a certified letter in the mail letting me know that my job has been terminated. That's just great....who's gonna hire me now????
Audrey, I'm so sorry to hear about your job!!! Hopefully when you are ready to go back to work there will be an opportunity you never expected that comes your way. Try not to worry about it now and just focus on getting well. That's the most important thing.
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