Dhare63
post-grad
Thanks Martha, will check his site!
TKR Second TKR - First had Arthrofibrosis
- Thread starter hhilltop
- Start date
Lots of good discussion here on glucosamine and tumeric. Thanks.
I'm definitely doing much better with the hyaluronic acid gel injections than I was before I had them, though it hasn't all been smooth, but the down times have had pretty quick rebounds. The first was the weekend after my first injection. I was feeling great. We had a picnic in a scenic setting where little streamlets wander in wet weather. It was dry and I could either step down into a little dry rivulet bed, or make a little jump of 3 feet. I did the later and then thought, don't know if that was the best choice. Then we hiked on a trail for a couple of miles, with rest stops. My knee didn't like me the next day, but it rebounded by the day after.
To try and walk off some of the Thanksgiving excesses we went on a hike for 45 minutes. I'd been to a healing conference shortly before then and they told me to picture my knee whole, and what I pictured was running. So on this hike for about 10 minutes, I decided to try and very lightly jog. WRONG! I was then limping around the Boston Science Museum and hauling myself up with the handrail at the IMAX. Amazingly after an evening of icing and elevating, it was only a little tender the next morning.
Then last weekend, I miscalculated a granite curb height and tripped and fell spread eagle right in front of the church with everyone filing in. Again, a night of icing, and a bit of tenderness the next day, but mostly okay with some residual lingering low level pain and stairs aren't spry.
So, I had a 4th injection of hyaluronic acid gel and he says he'd like to see me next week for another, but he is out of town, and then I'll be traveling, and it will probably be the new year before I get back in.
He said my options were: 1) see an orthopedic who might try to remove clean out junk in my knee or offer to do a TKR or consider trying a procedure that used to be covered by most insurances and no longer is after it has been labelled experimental<
I'm definitely doing much better with the hyaluronic acid gel injections than I was before I had them, though it hasn't all been smooth, but the down times have had pretty quick rebounds. The first was the weekend after my first injection. I was feeling great. We had a picnic in a scenic setting where little streamlets wander in wet weather. It was dry and I could either step down into a little dry rivulet bed, or make a little jump of 3 feet. I did the later and then thought, don't know if that was the best choice. Then we hiked on a trail for a couple of miles, with rest stops. My knee didn't like me the next day, but it rebounded by the day after.
To try and walk off some of the Thanksgiving excesses we went on a hike for 45 minutes. I'd been to a healing conference shortly before then and they told me to picture my knee whole, and what I pictured was running. So on this hike for about 10 minutes, I decided to try and very lightly jog. WRONG! I was then limping around the Boston Science Museum and hauling myself up with the handrail at the IMAX. Amazingly after an evening of icing and elevating, it was only a little tender the next morning.
Then last weekend, I miscalculated a granite curb height and tripped and fell spread eagle right in front of the church with everyone filing in. Again, a night of icing, and a bit of tenderness the next day, but mostly okay with some residual lingering low level pain and stairs aren't spry.
So, I had a 4th injection of hyaluronic acid gel and he says he'd like to see me next week for another, but he is out of town, and then I'll be traveling, and it will probably be the new year before I get back in.
He said my options were: 1) see an orthopedic who might try to remove clean out junk in my knee or offer to do a TKR or consider trying a procedure that used to be covered by most insurances and no longer is after it has been labelled experimental<
hmm _ I gave up trying to remove the < at the end of the previous post... It wasn't letting me delete it without deleting a lot more - so I'm continuing now below.
This experimental procedure would be an injection of my own blood platelets. However, now that it is considered experimental, it isn't covered by insurance. He said a research paper on the procedure is due out next week and it speaks very favorably. I'll try and post a link if anyone is interested. For now, here is a link at his site telling more about the procedure. broken link removed: https://jfentondo.com/rit.html. I'm just starting to browse and learn more. If any of you have information/experience, I'm all ears.
This experimental procedure would be an injection of my own blood platelets. However, now that it is considered experimental, it isn't covered by insurance. He said a research paper on the procedure is due out next week and it speaks very favorably. I'll try and post a link if anyone is interested. For now, here is a link at his site telling more about the procedure. broken link removed: https://jfentondo.com/rit.html. I'm just starting to browse and learn more. If any of you have information/experience, I'm all ears.
Dhare63
post-grad
Hi Martha, good to hear from you. The road to good health is paved with trial and error, and we have all been through it. I spent a day antique hunting with my hubby about 3 months after TKR only to find that the slow walking, standing and looking was not great on the knee. It is easier these days but again, it's all about testing the fences.
Good luck with deciding what your next steps might be. Keep us posted, I'll be watching for your updates! And, brace yourself for the Sunday storm, should be our first doozy!
Dawn
Good luck with deciding what your next steps might be. Keep us posted, I'll be watching for your updates! And, brace yourself for the Sunday storm, should be our first doozy!
Dawn
Yes, and my son flies in to Manchester Sunday morning for semester break. Hope the runway is clear for landing. Should be clear in Florida. He's a senior at FSC. Last Christmas at home before who knows where he'll be next year.
skigirl
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@hhilltop , I found your thread and thought I would reopen it for you. I can change the name if you want another one too.
To answer your question---yes, I think I would go for a second opinion. I agree with MaryO that they can clean the joint out arthroscopically and with an open procedure. My doc uses the open procedure and that is what I had. I can tell you that 18 months out, I am really happy that I did it. My knee is so much better and more comfortable for me. I think you should pursue having someone look at the leg. What does the Ostepath think? can he/she recommend someone for you to see? Or @Dhare63 do you live near Martha and do you know someone to recommend? Kelly
To answer your question---yes, I think I would go for a second opinion. I agree with MaryO that they can clean the joint out arthroscopically and with an open procedure. My doc uses the open procedure and that is what I had. I can tell you that 18 months out, I am really happy that I did it. My knee is so much better and more comfortable for me. I think you should pursue having someone look at the leg. What does the Ostepath think? can he/she recommend someone for you to see? Or @Dhare63 do you live near Martha and do you know someone to recommend? Kelly
Dhare63
post-grad
Hi Martha,
Maybe we can try to connect. It sounds like you are at a decision point on next steps. I know you have seen Dr. Houde. I trust him 100%, and if you decide to have surgery to remove scar tissue, I highly recommend you consider him.
If I can help, let me know. Thanks @skigirl for bringing me back to the conversation.
And Martha, stay warm. We are at -7 this morning....brrrr
Be well,
Dawn
Maybe we can try to connect. It sounds like you are at a decision point on next steps. I know you have seen Dr. Houde. I trust him 100%, and if you decide to have surgery to remove scar tissue, I highly recommend you consider him.
If I can help, let me know. Thanks @skigirl for bringing me back to the conversation.
And Martha, stay warm. We are at -7 this morning....brrrr
Be well,
Dawn
Thanks, Dawn,
Yes, I've been to Dr. Houde's though at the time it was more about my other knee than about scar tissue. My other knee quickly started behaving when injections were given up in Burlington a couple weeks later. It remains much better than it was, but I'm not at all certain what the long range picture is for it. I'm plunging into a new diet regime that I hope will help take weight off and keep it off. I'm sure that will help both of my knees.
I will be seeing a doctor in Boston in mid May about my knees and this time officially for a second opinion about my scar tissue issues. I dread the thought of doing a second round of surgery on that leg. I dread the thought of surgery on my other knee, too. I really, really, really, don't want to go through this ordeal again. It is bad enough to go through it once. I'm not at all certain what they will tell me. I'm even more uncertain about how I will respond to what they tell me.
Dr. Fenton says he can keep me from surgery through the injection regimen for my other knee. I'm inclined to go that route as long as possible. He also says he can't do anything for the scar tissue.
Anyone know an orthopedic surgeon/PT who is familiar using ultrasounds for assessments in New England or Michigan?
Yes, I've been to Dr. Houde's though at the time it was more about my other knee than about scar tissue. My other knee quickly started behaving when injections were given up in Burlington a couple weeks later. It remains much better than it was, but I'm not at all certain what the long range picture is for it. I'm plunging into a new diet regime that I hope will help take weight off and keep it off. I'm sure that will help both of my knees.
I will be seeing a doctor in Boston in mid May about my knees and this time officially for a second opinion about my scar tissue issues. I dread the thought of doing a second round of surgery on that leg. I dread the thought of surgery on my other knee, too. I really, really, really, don't want to go through this ordeal again. It is bad enough to go through it once. I'm not at all certain what they will tell me. I'm even more uncertain about how I will respond to what they tell me.
Dr. Fenton says he can keep me from surgery through the injection regimen for my other knee. I'm inclined to go that route as long as possible. He also says he can't do anything for the scar tissue.
Anyone know an orthopedic surgeon/PT who is familiar using ultrasounds for assessments in New England or Michigan?
Martha, I saw Dr. Freiberg at Mass. General for a second opinion. I know people who had a revision with him and were very pleased. However, after he delivered his assessment of my TKR ("I see hundreds of people a year just like you . . . with not very good knee replacements") I was speechless and it wasn't until an hour later, out on the street, when my questions came to mind and it was too late. So I would suggest asking your second opinion doc how you can pose questions to him that come up later. It's hard to take in what they say, process it and then formulate your questions.
I'll be seeing another doctor who is closer to me who uses ultrasound for guided injections in a couple of weeks. I guess I'll find out then if he uses ultrasound as a diagnostic tool also.
So, Mary, what kind of questions did you start having afterwards? Dartmouth has a patient message board that the doctors are very good about responding to. Maybe I should check to see if Boston hospitals do this also.
I think I'll try to find a good little recorder. I've encountered some fast talking doctors and the terms can be doctorese and not geared to laypeople. Then I can go back over the content with access to a computer to find visuals for my brain to process.
@maryo52
So, Mary, what kind of questions did you start having afterwards? Dartmouth has a patient message board that the doctors are very good about responding to. Maybe I should check to see if Boston hospitals do this also.
I think I'll try to find a good little recorder. I've encountered some fast talking doctors and the terms can be doctorese and not geared to laypeople. Then I can go back over the content with access to a computer to find visuals for my brain to process.
@maryo52
All of us have one or more friends who are nurses or people who have had to do some heavy navigating of the medical system. I would find such a person to go with you. It's hard not to have an emotional reaction to the appointment, which clouds our thinking. That other person will keep the conversation on target. ps Husbands don't always do well in this department.
You can always request a copy of the doctor's notes be sent to you even before leaving that day. In my case at Mass General, I got notes of both the baby doc (resident) and the Boss Doc. But the notes weren't entirely helpful because I had no way short of going back of getting answers to the questions that popped into my brain after we'd left. No matter what, the pace of the appointment is probably going to go faster than you want. So don't hesitate to slow it down.
You can always request a copy of the doctor's notes be sent to you even before leaving that day. In my case at Mass General, I got notes of both the baby doc (resident) and the Boss Doc. But the notes weren't entirely helpful because I had no way short of going back of getting answers to the questions that popped into my brain after we'd left. No matter what, the pace of the appointment is probably going to go faster than you want. So don't hesitate to slow it down.
Dhare63
post-grad
If you have an iPhone, set it to record video which will catch the audio for you to listen to later. I have done that on occasion and it has been helpful.
It's been awhile since I've posted on my own thread. Thought I'd bring it up to date. At my 2 year post op visit I was doing much better than I was at the one year post op. Last summer my left knee was giving me lots of pain - not in the knee, but most often the calf and early on in my foot. It all seemed so strange. Now I've learned that muscle connections can cause such responses when it is really the knee that is triggering it. Actually I think it may have been the other knee that was triggering it. I was trying to get back to my gardening routines and that was forcing me to stoop and squat and other hard on the knee routines. The right knee was still too weak to shoulder it's share of the load so the left knee was having to pick up some slack.
So with the help of a series of hyaluronic acid injections in my left knee, I did get through this past growing season without any significant painful episodes.
I have been exploring PRP for future considerations. I have found 2 friends that have undergone this treatment. One who said it did miracles for her horse, but not for her shoulder. Another who said it did help both of her shoulders, but she's still needs further assistance. One of the osteopathics I've talked to who performs them says 3-6 treatments are usually needed. All of these are out of pocket procedures because insurance doesn't cover them. I've found prices as low as $300 and as high as $1500 per injection. It isn't a surgical procedure. They draw some of your blood, spin it in a centriguge and withdraw a concentrate of the platelets. Then they inject it back into the joint.
When you use heat or cold therapy, or electrical stimulation, or acupuncture, you are bringing more blood flow into that region so the platelets can do the healing job that they do so well. PRP concentrates the platelets to help the process accelerate.
I'll be posting some articles soon to the PRP thread. Stay tuned.
So with the help of a series of hyaluronic acid injections in my left knee, I did get through this past growing season without any significant painful episodes.
I have been exploring PRP for future considerations. I have found 2 friends that have undergone this treatment. One who said it did miracles for her horse, but not for her shoulder. Another who said it did help both of her shoulders, but she's still needs further assistance. One of the osteopathics I've talked to who performs them says 3-6 treatments are usually needed. All of these are out of pocket procedures because insurance doesn't cover them. I've found prices as low as $300 and as high as $1500 per injection. It isn't a surgical procedure. They draw some of your blood, spin it in a centriguge and withdraw a concentrate of the platelets. Then they inject it back into the joint.
When you use heat or cold therapy, or electrical stimulation, or acupuncture, you are bringing more blood flow into that region so the platelets can do the healing job that they do so well. PRP concentrates the platelets to help the process accelerate.
I'll be posting some articles soon to the PRP thread. Stay tuned.
I'm posting this update the night before I have a prolozone injection in my shoulder. If it works well, I'll consider it in my knee, too.
My stiff leg still doesn't like stairs, but it does all right in most other settings - other than running and jumping... I can walk long distances, swim, I could cross country ski last winter, I haven't tried that this year yet - more because of my shoulder than knees.
I'm a bit nervous. Prolozone is sort of like prolotherapy. It is meant to irritate so that it wakes up the body's defense system to come fix the problem. My shoulder suffered a nasty tear to the SS and IS muscles (60-70%) in late August. For some reason it isn't as painful as the prior rotator cuff tears, though it is much more severe. I'll be going back for a second treatment in two weeks. I really don't want my body to respond with a variation of the aggressive scarring that hindered my knee recovery.
Perhaps my left knee will try this route, too. It has had a second series of hyaluranic acid gel injections. It really did wonders last year. This year my left knee is still talking to me about it's pains after the injections. I'm not at all ready to go through a second TKR.
I've been trying to workout and gain enough ROM for my right knee to do stairs normally. This has caused my left knee to speak up. I've been doing ionto and graston technique along with work trying to bend it further - it needs some stiff pressure - at first we were doing lighter routines - exercise bike, walking, squats, back bridge, lifting it up, these have proved to be too easy and wasn't really making gains. It needs more serious stretching. It still hurts to bend my knee enough to go downstairs. For the most part, I still go down with my right leg straight and my left knee does all of the bending. It is now 2.5 years since my TKR.
I've seen some pretty gnarly images of what scar tissue can look like in the knee. https://www.kneeandshoulder.md/arthro_02.html I'd really like to avoid surgery if possible, but these images really present a case for why surgery may be the only option to get stuff out of my joint, so it flexes better.
Yes, it's no picnic to have 3 joints to be worrying about, but I do manage to do most of what I want to do anyway.
@Dhare63 how are you doing? @skigirl and you? @maryo52
My stiff leg still doesn't like stairs, but it does all right in most other settings - other than running and jumping... I can walk long distances, swim, I could cross country ski last winter, I haven't tried that this year yet - more because of my shoulder than knees.
I'm a bit nervous. Prolozone is sort of like prolotherapy. It is meant to irritate so that it wakes up the body's defense system to come fix the problem. My shoulder suffered a nasty tear to the SS and IS muscles (60-70%) in late August. For some reason it isn't as painful as the prior rotator cuff tears, though it is much more severe. I'll be going back for a second treatment in two weeks. I really don't want my body to respond with a variation of the aggressive scarring that hindered my knee recovery.
Perhaps my left knee will try this route, too. It has had a second series of hyaluranic acid gel injections. It really did wonders last year. This year my left knee is still talking to me about it's pains after the injections. I'm not at all ready to go through a second TKR.
I've been trying to workout and gain enough ROM for my right knee to do stairs normally. This has caused my left knee to speak up. I've been doing ionto and graston technique along with work trying to bend it further - it needs some stiff pressure - at first we were doing lighter routines - exercise bike, walking, squats, back bridge, lifting it up, these have proved to be too easy and wasn't really making gains. It needs more serious stretching. It still hurts to bend my knee enough to go downstairs. For the most part, I still go down with my right leg straight and my left knee does all of the bending. It is now 2.5 years since my TKR.
I've seen some pretty gnarly images of what scar tissue can look like in the knee. https://www.kneeandshoulder.md/arthro_02.html I'd really like to avoid surgery if possible, but these images really present a case for why surgery may be the only option to get stuff out of my joint, so it flexes better.
Yes, it's no picnic to have 3 joints to be worrying about, but I do manage to do most of what I want to do anyway.
@Dhare63 how are you doing? @skigirl and you? @maryo52
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Martha,
You have a lot ahead of you, hope the prolozone shots help your shoulder.
Here is a simple exercise for rotator cuff injuries,
https://www.nytimes.com/2011/08/02/health/02brody.html
Good Luck,
You have a lot ahead of you, hope the prolozone shots help your shoulder.
Here is a simple exercise for rotator cuff injuries,
https://www.nytimes.com/2011/08/02/health/02brody.html
Good Luck,
skigirl
Former BoneSmart staff member
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Martha, I am glad to hear from you again. The Stiff knee is such a difficult thing to deal with---I relate, as you know. I have learned more about arthrofibrosis during the last year. For one thing, there is a new Kindle book which you can get from amazon written by Frank Noyes. It is called knee arthrofibrosis. it talks about adhesions from other surgeries too but there is a section post TKR.
Surgery does seem to be the other answer. however, recently one of the ski instructors who has struggled with a knee that has a 60 degree bend got a blood test which was sent to a lab in chicago sorry to be so vague, I can get the information for you , if you are interested. At any rate, her test showed that she has metal allergies which is a big cause of her adhesions. She is not searching for a surgeon in the Seattle area who can remove the adhesions and potentially implant an Oxininium Knee from Smith and Nephew. I gave her a list of doctors who specialize in arthrofibrosis---I Will put the list at the end of this post for you.
I now believe that if you have severe scarring, you should seek out a specialist who will give you the surgery, the rehab and help you with your post surgery life. it is not as simple as a simple surgery. My own recovery was very lengthy and frustrating to me!
I would not have surgery on the second knee until you are sure you know exactly why the scarring happened and if metal allergy has any part in that process. I think that there are answers and solutions for you out there, but you may have to travel and work harder to find the answers.
Here are the docs I sent to my friend. These are doctors who have published papers dealing with adhesions and scarring. Many of them trained at the Steadman clinic in Vail, Colorado which seems to be one of the places where scarring and adhesions are studied. I will pass on any additiional info that I find. Remember too that you can sometimes email records, MRI's, xrays etc to get a preliminary opinion from a doctor, which would save money and time. There must be someone at HSS in New York City as well.
Dr. Colin Eakin, Palo Alto Medical Foundation, California
Dr. Steadman, Steadman-Hawkins Clinic, Vail, Colorado
Dr. Peter Millet, Steadman Hawkins, Vail (as of 10/1/05)
Dr. Lonnie Paulos, Texas
Dr. Frank Noyes, Cincinnati Sports Clinic, Ohio
Dr. Wojitys, Ann Arbor, Michigan
Dr. Folk in South Carolina
Dr. Mike Terry, University of Chicago
Dr. Shelbourne, Indianapolis, IN
Dr. Flandry, Hughston Clinic, Columbus, Georgia
Surgery does seem to be the other answer. however, recently one of the ski instructors who has struggled with a knee that has a 60 degree bend got a blood test which was sent to a lab in chicago sorry to be so vague, I can get the information for you , if you are interested. At any rate, her test showed that she has metal allergies which is a big cause of her adhesions. She is not searching for a surgeon in the Seattle area who can remove the adhesions and potentially implant an Oxininium Knee from Smith and Nephew. I gave her a list of doctors who specialize in arthrofibrosis---I Will put the list at the end of this post for you.
I now believe that if you have severe scarring, you should seek out a specialist who will give you the surgery, the rehab and help you with your post surgery life. it is not as simple as a simple surgery. My own recovery was very lengthy and frustrating to me!
I would not have surgery on the second knee until you are sure you know exactly why the scarring happened and if metal allergy has any part in that process. I think that there are answers and solutions for you out there, but you may have to travel and work harder to find the answers.
Here are the docs I sent to my friend. These are doctors who have published papers dealing with adhesions and scarring. Many of them trained at the Steadman clinic in Vail, Colorado which seems to be one of the places where scarring and adhesions are studied. I will pass on any additiional info that I find. Remember too that you can sometimes email records, MRI's, xrays etc to get a preliminary opinion from a doctor, which would save money and time. There must be someone at HSS in New York City as well.
Dr. Colin Eakin, Palo Alto Medical Foundation, California
Dr. Steadman, Steadman-Hawkins Clinic, Vail, Colorado
Dr. Peter Millet, Steadman Hawkins, Vail (as of 10/1/05)
Dr. Lonnie Paulos, Texas
Dr. Frank Noyes, Cincinnati Sports Clinic, Ohio
Dr. Wojitys, Ann Arbor, Michigan
Dr. Folk in South Carolina
Dr. Mike Terry, University of Chicago
Dr. Shelbourne, Indianapolis, IN
Dr. Flandry, Hughston Clinic, Columbus, Georgia
