Thank you for your great info. I realize many bendy bodies are younger, but some of us are motoring toward much older! Our population is aging! With that and our nasty joints, some are facing joint replacements. I’m 8 weeks post op on a total knee replacement. Although being bendy helped in attaining full mobility in almost no time, there are many complications that I’m discovering. I wish I had researched it more. Poor wound healing and too much movement in the joint, the painful impact of new angles for your hip and thigh, and the anxiety of wondering if this joint will fail and needing a revision are consuming me. I’ve found very little in the medical community discussing this among other doctors and patients. It would be so helpful!
My exact thoughts Mary. I haven’t faced joint replacement, but my spine is deteriorating. I am attending a balance class with yoga type movements and it has helped me immensely right away. After a disastrous couple of visits to a PT who made my pain worse and wouldn’t listen to a thing I said, I’ve now been referred to an excellent one. I’m so grateful but I have been told there is surgery in my future. I guess as we age this is just to be expected?
Thanks so very much for all the great information Dr Bluestein!
You are most welcome and I’m glad you found a physical therapist who is a good fit. I often tell people that it is like dating and you do not find the right one on the first try.
Kathy, I have had two different cervical fusions, resulting in C3-C7 fused. Honestly, as terrified as I was, it was a piece of cake in comparison to my knee replacement. I wish you well on your health journey!
Yes I am glad I did cervical fusions. I had so much pain and weakness in both my arms. The anterior fusions worked well. The worst part was wearing that hard cervical collar for 8 weeks, 24/7. Of course being way too bendy, you’d never know I had them. I’m not all stiff like some folks would be.
Thanks, That you might sail through gaining range of motion, but you still have loose tissue that you need to strengthen. Also, incision healing. Even at 8 weeks PO, I have 4 spots that won’t close. The impact on my ankle is at times excruciating. Why? Because a new alignment of my shin? The pain at the top of my tibia that indicates movement of the artificial joint. Are there differences in how one approaches PT? I max out everything and am considered a rock star in PT, but then I come home and cannot hardly handle the pain. Why? Because of my poor incision healing, I have an infection. It’s considered superficial, but the pain associated is crazy. Are we just predisposed to having more pain? Why? I feel like a whiney wimp. I learned there are a variety of “constrained” knees to use. Which is best? Because of the laxity of my kneecap, it still continues to slip out of the groove of my new knee and cause issues. Is there something we could do the prevent it help that? should we avoid replacements? I’m mad that I didn’t research enough before hand, but even after surgery, I cannot find much other than “people with hEDS have complications with knee replacement.
I am so sorry to hear that. Given the frequency of this type of surgery, it is really ashamed that there is not more data. Can you explain what you mean by “ constrained” knees?
I found what I was looking for…I have the #2 knee.
Constraint was categorized into 4 levels – (1) Lowest, which included cruciate retaining implants, (2) Low, which included posterior stabilized implants, (3) High, which included posterior stabilized constrained and varus valgus constrained implants, and (4) Highest, a linked rotating hinge.
The doc told me there were 3 constrained knees, meaning, they had restricted movement as opposed to the standard one. Each is progressive in movement. The first, which was used on me, restricts the hyperextension of the knee. The second has longer posts into your tibia and femur and is a little more restrictive. The third is hinged and really limits movement. I’m going off what he told me. I now want to research it! Unfortunately, none of them address a patella that likes to dislocate. 🥺
I am so sorry to hear that. Often times “tightening“ parts of the body does not work, sadly! I feel very fortunate that I had orthopedic surgeons that talked me out of procedures like that.
I’m almost 52. A lovely mess. hEDS, MCAS, Sjogrens, DDD, CCI. Like y’all, I know how to have all the fun. 😉 197 medical interactions last year including 15 new surgical scars, 6 prolotherapy and a PRP. Still by the grace of God held down a job.
Resilient, because what’s the other option?
I’m in the Seattle area if you need referrals. There is an amazing community of hEDS providers here.
What level of detail? I’ll just assume more is more for the audience.
PRP stands for Platelets Rich Plasma. The idea is to irritate an area of chronic issues with a new irritant to initiate healing rather than just maintaining the status quo. In prolotherapy that irritant is often dextrose. For hEDS we’re trying to force scar tissue formation in ligaments to try to create some structure where none exists due to lost collagen and breakdown from the excessive motion of hypermobility. I’ve had prolotherapy injections in C2-C4, T2-T3 and T5-T9 plus the corresponding rib heads.
PRP instead of using a foreign irritant uses platelets from your own blood. In my most recent PRP last month we drew ~360 cc of blood, centrifuged it down to just the platelets, less than a tenth of original volume, and injected it into the facets and between the vertebrae from the trans alar ligaments at the back of my skull to C7. I’ve also had PRP in the sacroiliac, lumbar and pubis symphysis. I wouldn’t recommend that last one unless your desperation level hits 11 out of 10.
Recovery for prolotherapy is negligible if you’re used to chronic pain. Recovery from PRP is on the order of minor surgery. You can choose a general or local anesthetic. I chose a local with ropivacaine because like lots of zebras I’m immune to lidocaine. That and I had general anesthesia four times last year. I react poorly to it so each time is rough.
Had full thoracic PRP last month. Recovery was negligible. I do fear my habitual overload of curcumin and quercetin might be working at cross purposes from the inflammation viewpoint. Probably should have thought of that much earlier.
Hi Dr.Bluestein - Loving the newsletters, thank you, and the podcast is outstanding these days! If possible, would love to hear from an EDS-informed dentist, this dental crowding as I age makes me think in sunset years my tongue won't fit hahaha on a real note I do bite my tongue more than in younger years I think because my teeth have shifted inward so much but I meant more to discuss how to approach dental surgeries and pEDS precautions and radiating jaw pain, etc. Sending wishes to you for pain-free days and enough strength & time off to go have some fun in the Colorado snowshine!
Thank you so very much for your message! I actually have an episode coming up before too long with a dentist who is also an oral surgeon. You can submit your questions here.
Thank you for your great info. I realize many bendy bodies are younger, but some of us are motoring toward much older! Our population is aging! With that and our nasty joints, some are facing joint replacements. I’m 8 weeks post op on a total knee replacement. Although being bendy helped in attaining full mobility in almost no time, there are many complications that I’m discovering. I wish I had researched it more. Poor wound healing and too much movement in the joint, the painful impact of new angles for your hip and thigh, and the anxiety of wondering if this joint will fail and needing a revision are consuming me. I’ve found very little in the medical community discussing this among other doctors and patients. It would be so helpful!
My exact thoughts Mary. I haven’t faced joint replacement, but my spine is deteriorating. I am attending a balance class with yoga type movements and it has helped me immensely right away. After a disastrous couple of visits to a PT who made my pain worse and wouldn’t listen to a thing I said, I’ve now been referred to an excellent one. I’m so grateful but I have been told there is surgery in my future. I guess as we age this is just to be expected?
Thanks so very much for all the great information Dr Bluestein!
You are most welcome and I’m glad you found a physical therapist who is a good fit. I often tell people that it is like dating and you do not find the right one on the first try.
Kathy, I have had two different cervical fusions, resulting in C3-C7 fused. Honestly, as terrified as I was, it was a piece of cake in comparison to my knee replacement. I wish you well on your health journey!
And thank you Dr Bluestein. ♥️
Thanks Mary. That’s good to know. Wishing and hoping you get some answers and relief from your horrible pain.
Mary, it sounds like you’re glad you did the cervical fusions?
Yes I am glad I did cervical fusions. I had so much pain and weakness in both my arms. The anterior fusions worked well. The worst part was wearing that hard cervical collar for 8 weeks, 24/7. Of course being way too bendy, you’d never know I had them. I’m not all stiff like some folks would be.
Wow! I cannot even imagine how difficult it would be to sleep in a hard cervical collar!❤️🩹❤️🩹❤️🩹
You are most welcome!!! ❤️🩹
Thank you so much for that suggestion. From your perspective, what specifically do you wish you knew before your surgeries?
Thanks, That you might sail through gaining range of motion, but you still have loose tissue that you need to strengthen. Also, incision healing. Even at 8 weeks PO, I have 4 spots that won’t close. The impact on my ankle is at times excruciating. Why? Because a new alignment of my shin? The pain at the top of my tibia that indicates movement of the artificial joint. Are there differences in how one approaches PT? I max out everything and am considered a rock star in PT, but then I come home and cannot hardly handle the pain. Why? Because of my poor incision healing, I have an infection. It’s considered superficial, but the pain associated is crazy. Are we just predisposed to having more pain? Why? I feel like a whiney wimp. I learned there are a variety of “constrained” knees to use. Which is best? Because of the laxity of my kneecap, it still continues to slip out of the groove of my new knee and cause issues. Is there something we could do the prevent it help that? should we avoid replacements? I’m mad that I didn’t research enough before hand, but even after surgery, I cannot find much other than “people with hEDS have complications with knee replacement.
I am so sorry to hear that. Given the frequency of this type of surgery, it is really ashamed that there is not more data. Can you explain what you mean by “ constrained” knees?
I found what I was looking for…I have the #2 knee.
Constraint was categorized into 4 levels – (1) Lowest, which included cruciate retaining implants, (2) Low, which included posterior stabilized implants, (3) High, which included posterior stabilized constrained and varus valgus constrained implants, and (4) Highest, a linked rotating hinge.
Thank you so much for sharing that information!
The doc told me there were 3 constrained knees, meaning, they had restricted movement as opposed to the standard one. Each is progressive in movement. The first, which was used on me, restricts the hyperextension of the knee. The second has longer posts into your tibia and femur and is a little more restrictive. The third is hinged and really limits movement. I’m going off what he told me. I now want to research it! Unfortunately, none of them address a patella that likes to dislocate. 🥺
I am so sorry to hear that. Often times “tightening“ parts of the body does not work, sadly! I feel very fortunate that I had orthopedic surgeons that talked me out of procedures like that.
I found my people! That’s exciting.
I’m almost 52. A lovely mess. hEDS, MCAS, Sjogrens, DDD, CCI. Like y’all, I know how to have all the fun. 😉 197 medical interactions last year including 15 new surgical scars, 6 prolotherapy and a PRP. Still by the grace of God held down a job.
Resilient, because what’s the other option?
I’m in the Seattle area if you need referrals. There is an amazing community of hEDS providers here.
Hello zebras! 🦓
Thank you so much for sharing all of that. I would love to know more details about the PRP if you are willing to share.
What level of detail? I’ll just assume more is more for the audience.
PRP stands for Platelets Rich Plasma. The idea is to irritate an area of chronic issues with a new irritant to initiate healing rather than just maintaining the status quo. In prolotherapy that irritant is often dextrose. For hEDS we’re trying to force scar tissue formation in ligaments to try to create some structure where none exists due to lost collagen and breakdown from the excessive motion of hypermobility. I’ve had prolotherapy injections in C2-C4, T2-T3 and T5-T9 plus the corresponding rib heads.
PRP instead of using a foreign irritant uses platelets from your own blood. In my most recent PRP last month we drew ~360 cc of blood, centrifuged it down to just the platelets, less than a tenth of original volume, and injected it into the facets and between the vertebrae from the trans alar ligaments at the back of my skull to C7. I’ve also had PRP in the sacroiliac, lumbar and pubis symphysis. I wouldn’t recommend that last one unless your desperation level hits 11 out of 10.
Recovery for prolotherapy is negligible if you’re used to chronic pain. Recovery from PRP is on the order of minor surgery. You can choose a general or local anesthetic. I chose a local with ropivacaine because like lots of zebras I’m immune to lidocaine. That and I had general anesthesia four times last year. I react poorly to it so each time is rough.
Had full thoracic PRP last month. Recovery was negligible. I do fear my habitual overload of curcumin and quercetin might be working at cross purposes from the inflammation viewpoint. Probably should have thought of that much earlier.
Do you mean from the standpoint of inflammation that is desired after PRP? I’m not sure. I totally understand your comment.
Yes. Inflammation is necessary for PRP to work. I forgot all about the supplements I take to reduce it.
Hi Dr.Bluestein - Loving the newsletters, thank you, and the podcast is outstanding these days! If possible, would love to hear from an EDS-informed dentist, this dental crowding as I age makes me think in sunset years my tongue won't fit hahaha on a real note I do bite my tongue more than in younger years I think because my teeth have shifted inward so much but I meant more to discuss how to approach dental surgeries and pEDS precautions and radiating jaw pain, etc. Sending wishes to you for pain-free days and enough strength & time off to go have some fun in the Colorado snowshine!
Thank you so very much for your message! I actually have an episode coming up before too long with a dentist who is also an oral surgeon. You can submit your questions here.
https://forms.gle/yVfqkxU61BwToe5QA
Thank you Linda!