Hey there @rwinney !! Sorry I have been so distant for a little while now ... so much going on in life, as you know. I actually did something for me and took this semester off from school because I realized I had too much on my plate "physically" and needed to put my health as a priority. Besides, my academic focus was becoming scattered and my body was screaming "REST." I went through the SCS trial (Boston Scientific) towards the end of October, and the results were incredible! I had 85% relief all across the board for all of my symptoms - nausea, pain and allodynia. I felt like a whole new person and I actually cried. I couldn't believe it was actually possible to feel so good again! I had 4 days of amazing relief, with only one minor complication that was quickly remedied, but otherwise they deemed me a highly prime candidate for the permanent implant. I'm going into surgery for this on 12/21 (next Wednesday) and I'm counting down every second! The last few months all of my symptoms have escalated and I've been sick quite a lot, but my joy continues because there is so much hope ahead! 🙂 Thank you so much for thinking of me and for all of the positive thoughts sent my way - I've felt and absorbed each and every one of them! Thank you!! I hope you're doing good also???
I’ve gotten a lot of relief from my Boston Scientific, too!! I’m about 90-95% better! It takes time for everything to fall into place with the implant. My 9 months ended yesterday for it to fuse into my spine.
The permanent implant was not the immediate relief I felt from the temporary implant. Not sure why. Follow their directions. Give it time to settle into your body. In March I was struggling to walk. Today , periodically I use my cane. I’m doing water aerobics three times a week. My next goal it to get the weight off that I have gained since my CRPS started three years ago.
Hey there @rwinney !! Sorry I have been so distant for a little while now ... so much going on in life, as you know. I actually did something for me and took this semester off from school because I realized I had too much on my plate "physically" and needed to put my health as a priority. Besides, my academic focus was becoming scattered and my body was screaming "REST." I went through the SCS trial (Boston Scientific) towards the end of October, and the results were incredible! I had 85% relief all across the board for all of my symptoms - nausea, pain and allodynia. I felt like a whole new person and I actually cried. I couldn't believe it was actually possible to feel so good again! I had 4 days of amazing relief, with only one minor complication that was quickly remedied, but otherwise they deemed me a highly prime candidate for the permanent implant. I'm going into surgery for this on 12/21 (next Wednesday) and I'm counting down every second! The last few months all of my symptoms have escalated and I've been sick quite a lot, but my joy continues because there is so much hope ahead! 🙂 Thank you so much for thinking of me and for all of the positive thoughts sent my way - I've felt and absorbed each and every one of them! Thank you!! I hope you're doing good also???
Girl, I knew you had too much on your plate back when we first met. Thank goodness you allowed yourself grace, listened to your body, and took the semester off. Thay was a big step! Understandably, not an easy decision but your well-being has to come first.
Incredible news that the SCS trial gave you relief! First, I was happy to see you replied back but then went on to read you had success and are feeling relief. You made my day.
I'm sorry you've been sick and wish you so much luck on the 21st. I, and other Connect members look forward to hearing how you progress forward with the permanent implant. Please take care and keep your chin up. Even us positive folks hit the bottom sometimes. Keep on keeping on. Good luck. You got this!!
Girl, I knew you had too much on your plate back when we first met. Thank goodness you allowed yourself grace, listened to your body, and took the semester off. Thay was a big step! Understandably, not an easy decision but your well-being has to come first.
Incredible news that the SCS trial gave you relief! First, I was happy to see you replied back but then went on to read you had success and are feeling relief. You made my day.
I'm sorry you've been sick and wish you so much luck on the 21st. I, and other Connect members look forward to hearing how you progress forward with the permanent implant. Please take care and keep your chin up. Even us positive folks hit the bottom sometimes. Keep on keeping on. Good luck. You got this!!
@rwinney Hey there! Sorry for the delay again in response...I've been physically 'down' these last two weeks recovering from my surgery, and I've been hyperfocused catching up on some of the activities I've neglected for a while i.e. language studies, seeing friends and relaxing ! 🙂 Anyways, my surgery on 12/21 was a complete success - took about 3 hours - and I've had 100% symptom relief i.e. pain/nausea/hypersensitivity for 17 days now !!! I feel like I've been given my life back and my old skin traded out for something brand new that feels good! CRAZY. I never doubted tho - everything lined up perfectly and now I'm so happy and grateful and love waking up in the morning with a new sense of joy in my life! I've still got some swelling that needs to go away, 3 months of recovery/restrictions ahead and some sporadic sickness i.e. throwing up w/o a cause, but otherwise I'm just taking it easy and slowly resuming life's activities. I start back my spring semester for school on Jan. 30, and I took one thing off my plate also, but you know me...something else will creep itself on and I'll welcome it in! LOL. Always looking forward and staying positive. Thanks for all your thoughts and support on my behalf - it really means the world to me, and I'm so grateful!!! Hope you're doing well yourself! 🙂 <3
@rwinney Hey there! Sorry for the delay again in response...I've been physically 'down' these last two weeks recovering from my surgery, and I've been hyperfocused catching up on some of the activities I've neglected for a while i.e. language studies, seeing friends and relaxing ! 🙂 Anyways, my surgery on 12/21 was a complete success - took about 3 hours - and I've had 100% symptom relief i.e. pain/nausea/hypersensitivity for 17 days now !!! I feel like I've been given my life back and my old skin traded out for something brand new that feels good! CRAZY. I never doubted tho - everything lined up perfectly and now I'm so happy and grateful and love waking up in the morning with a new sense of joy in my life! I've still got some swelling that needs to go away, 3 months of recovery/restrictions ahead and some sporadic sickness i.e. throwing up w/o a cause, but otherwise I'm just taking it easy and slowly resuming life's activities. I start back my spring semester for school on Jan. 30, and I took one thing off my plate also, but you know me...something else will creep itself on and I'll welcome it in! LOL. Always looking forward and staying positive. Thanks for all your thoughts and support on my behalf - it really means the world to me, and I'm so grateful!!! Hope you're doing well yourself! 🙂 <3
This is really great news! I'm so happy to hear you're having success with the Boston Scientific permanent implant!! What incredible improvement to feel 100% symptom relief and hope again, like a new you who wants to wake up in the morning. @grannyzoo mentions her 90-95% relief from CRPS with her Boston Scientific implant as well. I'm tagging members like @socalfp, @drg24242 and @pdxgardener who struggle with CRPS and may be interested in your results and learning about the possibilities of an implant.
Best of luck with your continued recovery. I know you need to take things slow so I'm wishing you the patience to continue doing so without overloading. Good luck in your spring semester and please, as you are able, keep us posted now and again about your progress with the implant. Happy days of finding joy!
This is really great news! I'm so happy to hear you're having success with the Boston Scientific permanent implant!! What incredible improvement to feel 100% symptom relief and hope again, like a new you who wants to wake up in the morning. @grannyzoo mentions her 90-95% relief from CRPS with her Boston Scientific implant as well. I'm tagging members like @socalfp, @drg24242 and @pdxgardener who struggle with CRPS and may be interested in your results and learning about the possibilities of an implant.
Best of luck with your continued recovery. I know you need to take things slow so I'm wishing you the patience to continue doing so without overloading. Good luck in your spring semester and please, as you are able, keep us posted now and again about your progress with the implant. Happy days of finding joy!
@rwinney Hey again! So, I went back to work this past week and it was really tough, both mentally and physically. I'm on light duty and have changed my position at work temporarily so I can continue to work and get paid etc, and not compromise this last surgery's success. The first two days were horrible, physically. And, I attribute that to "not being ready" to return to work + my body's unfortunate ability of absorbing everyone's energy and all the stresses around / inside of me. I'm "off" on Wednesdays and can never seem to find time to rest, but I did try my best. The next two days were OK, but still in moderate pain, despite my efforts to manipulate (change/play around with) the settings on my implant's remote. Thankfully, this is nothing new to me and so the level of pain (even tho it was completely off the charts) did not catch me off guard, at the end of the day. All I can really do is accept each day as it comes, move on and be thankful for what I have. So, this weekend, I'm doing my best to mentally detox, but it's still busy. But, I'm looking forward to reengaging in school again, tho I'm also enjoying the "time off" because I know I'll be very busy for the next 4 months. Overall, though, I'm doing good and the pain has significantly subsided since yesterday. Thanks for the well wishes and good thoughts, I always appreciate the encouragement from everyone on here, and that is a huge element in what keeps me going. 🙂 On another note, I just found out my poor Mom has a very bad case of shingles, and she's dealing with probably a more severe amount of nerve pain than I ever did (I can only presume, not for certain) and, though, it's horrible for her, it's good for me because I can relate and empathize. She's watched me go thru this for so long now, that she's "familiar from a distance" with all the battles. And, I think, that helps her with keeping her mindset positive and knowing how to find ways to face each day and always move forward. I wish I could take it away, but I know I cannot. This is her battle - I can only hold the shield in front of her while she wields the sword, so-to-speak. Sorry lol, I'm a writer, daydreamer and adventurous child at heart, so I often catch myself speaking in metaphors and illustrations, because that's how I know to communicate best. 🙂 Hope you're doing okay, wishing you all the best and joy in the world! <3
This is really great news! I'm so happy to hear you're having success with the Boston Scientific permanent implant!! What incredible improvement to feel 100% symptom relief and hope again, like a new you who wants to wake up in the morning. @grannyzoo mentions her 90-95% relief from CRPS with her Boston Scientific implant as well. I'm tagging members like @socalfp, @drg24242 and @pdxgardener who struggle with CRPS and may be interested in your results and learning about the possibilities of an implant.
Best of luck with your continued recovery. I know you need to take things slow so I'm wishing you the patience to continue doing so without overloading. Good luck in your spring semester and please, as you are able, keep us posted now and again about your progress with the implant. Happy days of finding joy!
@rwinney And yes, I'll try my best to do better about getting on here more often to post updates. If there is anything I can do to help or encourage anyone struggling on here, please don't hesitate to send them my way, or tag me.
Wondering if there is any information on PTS evolving into CRPS due to a DVT that takes 8 months to resolve or if an early diagnosis and treatment of CRPS (1 month of symptoms, treated with sympathetic nerve blocks, physiotherapy then peripheral nerve blocks within 3 months of diagnosis) is affected by the presence of large DVT ? Typically, early intervention has good outcomes.
Wondering if there is any information on PTS evolving into CRPS due to a DVT that takes 8 months to resolve or if an early diagnosis and treatment of CRPS (1 month of symptoms, treated with sympathetic nerve blocks, physiotherapy then peripheral nerve blocks within 3 months of diagnosis) is affected by the presence of large DVT ? Typically, early intervention has good outcomes.
Hi @andylynn, Welcome to Connect. I think you are right, early intervention and detection typically has good outcomes. Your questions are well thought out and ones that if it were me, I would take to my primary care doctor or care team to see if they have some thoughts. I did find an article that is similar to what you are asking that might provide more information and another one from 2014 on early detection.
Hi @andylynn, Welcome to Connect. I think you are right, early intervention and detection typically has good outcomes. Your questions are well thought out and ones that if it were me, I would take to my primary care doctor or care team to see if they have some thoughts. I did find an article that is similar to what you are asking that might provide more information and another one from 2014 on early detection.
Thank you for the information! Greatly appreciated. I will definitely check it out. I have found a couple papers but did not come across the one you suggested.
I have had CRPS for 13 years. Undiagnosed DVT 13.5 years ago which evolved into a massive DVT, ankle to groin! First PTS then CRPS. I am very knowledgeable about CRPS but am seeking specific information.
Thank you for the information! Greatly appreciated. I will definitely check it out. I have found a couple papers but did not come across the one you suggested.
I have had CRPS for 13 years. Undiagnosed DVT 13.5 years ago which evolved into a massive DVT, ankle to groin! First PTS then CRPS. I am very knowledgeable about CRPS but am seeking specific information.
Another tool you might want to check out is Google Scholar (https://scholar.google.com/) if you haven't already seen and used it. I like that it lets you sort results by year.
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I’ve gotten a lot of relief from my Boston Scientific, too!! I’m about 90-95% better! It takes time for everything to fall into place with the implant. My 9 months ended yesterday for it to fuse into my spine.
The permanent implant was not the immediate relief I felt from the temporary implant. Not sure why. Follow their directions. Give it time to settle into your body. In March I was struggling to walk. Today , periodically I use my cane. I’m doing water aerobics three times a week. My next goal it to get the weight off that I have gained since my CRPS started three years ago.
Wishing you the best! Remember, give it time!!
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6 ReactionsGirl, I knew you had too much on your plate back when we first met. Thank goodness you allowed yourself grace, listened to your body, and took the semester off. Thay was a big step! Understandably, not an easy decision but your well-being has to come first.
Incredible news that the SCS trial gave you relief! First, I was happy to see you replied back but then went on to read you had success and are feeling relief. You made my day.
I'm sorry you've been sick and wish you so much luck on the 21st. I, and other Connect members look forward to hearing how you progress forward with the permanent implant. Please take care and keep your chin up. Even us positive folks hit the bottom sometimes. Keep on keeping on. Good luck. You got this!!
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Helpful -
Hug
6 Reactions@rwinney Hey there! Sorry for the delay again in response...I've been physically 'down' these last two weeks recovering from my surgery, and I've been hyperfocused catching up on some of the activities I've neglected for a while i.e. language studies, seeing friends and relaxing ! 🙂 Anyways, my surgery on 12/21 was a complete success - took about 3 hours - and I've had 100% symptom relief i.e. pain/nausea/hypersensitivity for 17 days now !!! I feel like I've been given my life back and my old skin traded out for something brand new that feels good! CRAZY. I never doubted tho - everything lined up perfectly and now I'm so happy and grateful and love waking up in the morning with a new sense of joy in my life! I've still got some swelling that needs to go away, 3 months of recovery/restrictions ahead and some sporadic sickness i.e. throwing up w/o a cause, but otherwise I'm just taking it easy and slowly resuming life's activities. I start back my spring semester for school on Jan. 30, and I took one thing off my plate also, but you know me...something else will creep itself on and I'll welcome it in! LOL. Always looking forward and staying positive. Thanks for all your thoughts and support on my behalf - it really means the world to me, and I'm so grateful!!! Hope you're doing well yourself! 🙂 <3
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Like -
Helpful -
Hug
5 ReactionsThis is really great news! I'm so happy to hear you're having success with the Boston Scientific permanent implant!! What incredible improvement to feel 100% symptom relief and hope again, like a new you who wants to wake up in the morning. @grannyzoo mentions her 90-95% relief from CRPS with her Boston Scientific implant as well. I'm tagging members like @socalfp, @drg24242 and @pdxgardener who struggle with CRPS and may be interested in your results and learning about the possibilities of an implant.
Best of luck with your continued recovery. I know you need to take things slow so I'm wishing you the patience to continue doing so without overloading. Good luck in your spring semester and please, as you are able, keep us posted now and again about your progress with the implant. Happy days of finding joy!
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Like -
Helpful -
Hug
3 Reactions@rwinney Hey again! So, I went back to work this past week and it was really tough, both mentally and physically. I'm on light duty and have changed my position at work temporarily so I can continue to work and get paid etc, and not compromise this last surgery's success. The first two days were horrible, physically. And, I attribute that to "not being ready" to return to work + my body's unfortunate ability of absorbing everyone's energy and all the stresses around / inside of me. I'm "off" on Wednesdays and can never seem to find time to rest, but I did try my best. The next two days were OK, but still in moderate pain, despite my efforts to manipulate (change/play around with) the settings on my implant's remote. Thankfully, this is nothing new to me and so the level of pain (even tho it was completely off the charts) did not catch me off guard, at the end of the day. All I can really do is accept each day as it comes, move on and be thankful for what I have. So, this weekend, I'm doing my best to mentally detox, but it's still busy. But, I'm looking forward to reengaging in school again, tho I'm also enjoying the "time off" because I know I'll be very busy for the next 4 months. Overall, though, I'm doing good and the pain has significantly subsided since yesterday. Thanks for the well wishes and good thoughts, I always appreciate the encouragement from everyone on here, and that is a huge element in what keeps me going. 🙂 On another note, I just found out my poor Mom has a very bad case of shingles, and she's dealing with probably a more severe amount of nerve pain than I ever did (I can only presume, not for certain) and, though, it's horrible for her, it's good for me because I can relate and empathize. She's watched me go thru this for so long now, that she's "familiar from a distance" with all the battles. And, I think, that helps her with keeping her mindset positive and knowing how to find ways to face each day and always move forward. I wish I could take it away, but I know I cannot. This is her battle - I can only hold the shield in front of her while she wields the sword, so-to-speak. Sorry lol, I'm a writer, daydreamer and adventurous child at heart, so I often catch myself speaking in metaphors and illustrations, because that's how I know to communicate best. 🙂 Hope you're doing okay, wishing you all the best and joy in the world! <3
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1 Reaction@rwinney And yes, I'll try my best to do better about getting on here more often to post updates. If there is anything I can do to help or encourage anyone struggling on here, please don't hesitate to send them my way, or tag me.
Wondering if there is any information on PTS evolving into CRPS due to a DVT that takes 8 months to resolve or if an early diagnosis and treatment of CRPS (1 month of symptoms, treated with sympathetic nerve blocks, physiotherapy then peripheral nerve blocks within 3 months of diagnosis) is affected by the presence of large DVT ? Typically, early intervention has good outcomes.
Hi @andylynn, Welcome to Connect. I think you are right, early intervention and detection typically has good outcomes. Your questions are well thought out and ones that if it were me, I would take to my primary care doctor or care team to see if they have some thoughts. I did find an article that is similar to what you are asking that might provide more information and another one from 2014 on early detection.
-- Predictors of long-term post-thrombotic syndrome following high proximal deep vein thrombosis: a cross-sectional study:
https://thrombosisjournal.biomedcentral.com/articles/10.1186/s12959-020-00253-8
-- Dermatological Findings in Early Detection of Complex Regional Pain Syndrome:
https://jamanetwork.com/journals/jamadermatology/fullarticle/1861486
Are you still being treated for Post thrombotic syndrome (PTS) or is it watch and wait?
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2 ReactionsThank you for the information! Greatly appreciated. I will definitely check it out. I have found a couple papers but did not come across the one you suggested.
I have had CRPS for 13 years. Undiagnosed DVT 13.5 years ago which evolved into a massive DVT, ankle to groin! First PTS then CRPS. I am very knowledgeable about CRPS but am seeking specific information.
Thank you for your response.
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Like -
Helpful -
Hug
1 ReactionAnother tool you might want to check out is Google Scholar (https://scholar.google.com/) if you haven't already seen and used it. I like that it lets you sort results by year.