45 years post-op spinal fusion w / harrington rod.

Posted by mayomayo @mayomayo, Nov 27, 2020

Hi I'm new to this site but not to the pain that I know many others go through. A little background I, was fused in January 1976 at 15 years old in Shriners Hospital for Crippled Children in Phila. PA . I have had all kinds of procedures and rx's over the years ,you name it, I have probably tried it. I am now 60 and along with the earlier problems now I have "OLD" problems added to existing and worsening ones. So is there anyone who has found relief with newer treatments? I had an ablation done as my most recent procedure but it took me a year to overcome the pain and numbness and weakness and at times unbearable cementness it felt like . Even my pain center said my condition was" bizarre"!! Not something you want to hear come out of your pm Dr.'s mouth. Needless to say I am very weary of a lot of things , I am open to all info, thanks for letting me ramble. D

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@lindaferrara

Yes please keep up posting updates.
I am scared to get spinal surgery. Most of the cases I've read about seemed to have gotten worse sooner or later.
I was also informed that I would need someone to live with me, a caregiver, for at least a week or two for assistance with every little thing, e.g., going to the bathroom, sitting up.

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I live alone and have had multilevel fusions, both lumbar and cervical spine, 2011, had them 6 weeks apart. Other than having someone with me that first night I went home, I was ok. I’m pretty used to being alone. I DID need a housekeeper!

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@jenniferhunter

@elsa Hi Elsa. That is great that you are exercising to maintain your strength. Good for you! I think myofascial release can help you, and with many years of scar tissue, it will probably take longer. I also have thoracic outlet syndrome that waited about 10 years before I began MFR work and I have improved a lot because of MFR. My doctor predicted I needed 2 - 3 years of PT with MFR and it was during that time that my bulging cervical disc ruptured and collapsed so I hit a plateau and stopped progressing, but having done that work on my neck and shoulders made it easier for my spine surgeon because my muscle was not as tight, and I had an easier recovery from my cervical fusion. I started working on MFR again at about 6 months post op. It's like peeling layers of an onion to reveal the layers underneath and it changes as you get deeper. The fascia connects like a web through the body and I can also feel it moving down in my leg or hip when my PT is working on my neck or jaw. It also pulls across to the opposite side to the shoulder or opposite hip. Tightness has pulled my pelvis out of alignment from the tightness through my ribs that connects downward. The incision scar on my neck does get tight and can initiate a muscle spasm and periodically needs more stretching. If your body stops moving, things tend to tighten up again. I'm working on rehabbing my leg after an open ankle fracture that had 2 surgeries last spring. After spending 3 months of no weight bearing and sitting on the couch, I'm catching up again on some of the neck and shoulder tightness and working on strength and coordination for walking.

Some of what my therapist has worked on is a big scar on my ribs that is 50 years old that never had stitches by pulling on it. All of that connects to fascia under it. When my PT first started working on my neck, it was stuck together and she could not feel the individual muscles until I'd had about 2 years of MFR that was about 2 times a week. You should be able to feel some improvement soon after you start, and you'll progress faster if you work on the self treating MFR stretching that you can do at home. I've become good at inventing ways to stretch. Once you gain the body awareness to feel the fascia slide and move and where it goes, you can stretch to find that feeling and you just hold it and wait for the fascia to realign itself. When you first start therapy, it might take 15 minutes at first to start to slide, but as you keep working, it will start sliding within 5 minutes or so. Look for a John Barne's trained expert level therapist. There are also some John Barne's workshops for the public to teach the methods about once a year. John is an older guy, so at some point, he may retire. His website is http://www.myofascialrelease.com and there is a provider search.

I think you will benefit from MFR and it will help get muscles aligned better which will align the bones better like the pelvis. When that is off, it causes back or leg pain for me. The pelvis can twist because it has joints and is made of a few different bones. I know when I feel fatigue in half of my low back, it is because my pelvis is off, and it can make one leg seem too long or short. There are some PT moves to realign the pelvis. I've learned in my rehab that gluteus medius on the sides of my hips has a job to keep the pelvis bones from shifting forward, and mine fatigue with walking, but as I regain strength there, I get better pelvis stability. To answer your question, yes, the fascia can be remodeled and realigned after being stuck for years. I have done that myself.

Good for you for avoiding opiates. I never took a single one after I left the hospital after my spine surgery. I had pain, but it was bearable. My ankle fracture was actually much more painful and over a longer time than my spine surgery and I managed to get off the hydrocodone in 2 weeks and I only took a small doses as needed because it nauseates me, so that was not round the clock. I spaced out doses and waited until I had higher pain levels before taking he next one and I alternated with the Ibuprofin. You are welcome to join our MFR discussion. I started it to collect a lot of information as a resource, so the first pages have lots of links. Here is the link.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Curious, does your insurance pay for that? I can’t afford a massage weekly, doubt I could afford that out of pocket. It’s a sad commentary on healthcare in America. N.B. For me massage is therapeutic, not a luxury.

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@jenniferhunter

@mayomayo Welcome to Connect. I am sure a lot has changed since your spine surgery. All surgery creates scar tissue internally in the fascia. I am also a spine surgery patient, but mine was a single level cervical fusion without hardware. What has helped me a lot before and after spine surgery is my physical therapist who does myofascial release therapy or MFR. This can break surgical scar tissue in the fascia and release the stuck fascia that keeps our bodies from moving properly. Of course movement changes with rods on your spine and that has limited the rest of your body too. MFR gets fluids circulating better within the body as well as allowing the waste products to be removed. If it's stuck the tissue gets dehydrated and painful.

Here is part of another post I had written that explains what the fascia does. This is just physical therapy and you may want to try it. There is a provider search on the MFR website. It has helped me a lot. Currently I am rehabbing my ankle after a bad fracture and 2 surgeries. I had limited mobility all summer and have had to use MFR to break fascial adhesions caused by sitting too much.

I wanted to explain that what bathes your cells is the lymph fluid and it carries nutrients as well as waste products. The blood cells are inside the circulatory system and the smallest capillaries have walls that are only one cell thick. The lymph can leak out between these cells. Your body is also constructed within a connective tissue framework, the fascia that holds the cells of the organs together. Fluids must be able to pass through this to supply the organs. When there are fascial restrictions, it cuts off this exchange of nutrients and the waste products accumulate in the tissue. The fascia is also a conductor of electricity and signaling throughout the body. The lymph collects and drains back into the circulatory system where it gets filtered as the blood goes through the liver and kidneys where wastes are processed and eliminated.

The fascial tissues can be remodeled with myofascial release which does literally remodel and rearrange the fascia as it converts into a semi liquid state and slides on itself. In our MFR discussion, you can find a video that shows this happen in living tissue. You will find the video at this page.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/?pg=5#chv4-comment-stream-header

I think aging isn't responsible as a catch all for fascial dysfunction. Instead, it's our habits of being sedentary and eating foods that cause inflammation that create the symptoms of "aging". It is inflammation driving it, and it you reduce inflammation through healthy choices, you slow down that process that everyone accepts as aging. The fascia gets stuck to itself and stops having the ability to slide.

Another note of interest that I saw was in some Mayo news and research to regenerate heart tissue that showed a photo of a perfectly formed white heart. It might have been in the Ken Burns documentary. The heart muscle cells had been removed through some process and what was left was the fascial framework of the heart or the "scaffold" on which the heart was constructed. When you see that, you realize how extensive fascia is because it surrounds all the cells of the organs in our bodies and it holds the circulatory system where it belongs as connective tissue. The fascia actually is an organ itself which they recently named the interstitium in recent literature.

Our Myofascial release discussion.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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I find this myofascial release therapy interesting. I also had a spinal fusion down my back for scoliosis in 1975 at Fairview Hospital in Minneapolis, MN when I was 17. In 1978, they did it over again because there were spots down my spine that hadn't fused. I had Dr. Moe, who actually studied under Dr. Harrington, who the rod is named after. My back has been fine, but I have a lot of pain on my tailbone and rectal area and across my buttocks that has been diagnosed as pudendal nerve pain. I've had this for 13 years now . . .I really try to avoid sitting at all! I have recently started on gabapentin but that doesn't seem to be working. I had pudendal nerve entrapment surgery in 2010, but that only took the pain away for 7 months. I guess now I am starting to wonder if this pain could be coming from my scoliosis surgeries because my rod went down to either L-4 or L-5. I either stand or lie on ice. . .the pain can be more than I can handle somedays.

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@wisco50

Curious, does your insurance pay for that? I can’t afford a massage weekly, doubt I could afford that out of pocket. It’s a sad commentary on healthcare in America. N.B. For me massage is therapeutic, not a luxury.

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@wisco50 Myofascial release isn't massage. It's considered manual therapy and my PT codes it that way. They write codes for 15 minute increments or units of treatment, and she also does a few other traditional PT things in the session. My insurance does pay for it. I suggest ask your provider what the codes would be and then call your insurance to see if they cover it and check if they are in network. You can also ask your provider for a cash price. Submitting to insurance is complicated because of the "in-network discount" which cuts the payment down a lot to a negotiated rate which is a contract when the provider becomes an in network provider. Sometimes a cash price is about half the retail price which has to be set higher because of the discounts.

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@toula

I find this myofascial release therapy interesting. I also had a spinal fusion down my back for scoliosis in 1975 at Fairview Hospital in Minneapolis, MN when I was 17. In 1978, they did it over again because there were spots down my spine that hadn't fused. I had Dr. Moe, who actually studied under Dr. Harrington, who the rod is named after. My back has been fine, but I have a lot of pain on my tailbone and rectal area and across my buttocks that has been diagnosed as pudendal nerve pain. I've had this for 13 years now . . .I really try to avoid sitting at all! I have recently started on gabapentin but that doesn't seem to be working. I had pudendal nerve entrapment surgery in 2010, but that only took the pain away for 7 months. I guess now I am starting to wonder if this pain could be coming from my scoliosis surgeries because my rod went down to either L-4 or L-5. I either stand or lie on ice. . .the pain can be more than I can handle somedays.

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@toula Myofascial therapy might be worth looking into. It is so beneficial to a lot of conditions when our bodies get stuck. Other issues that may affect that area could be pelvic alignment. Here is an article that gets pretty technical written for physical therapists that has a section about pundental nerve entrapment that describes the piriformis muscle as a contributing factor. My PT has me stretch my piriformis, but that should be something to ask your therapist about because of your back surgeries. This article describes various issues that cause symptoms similar to back problems that are caused by the pelvis.

Here is an excerpt from https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
"Most of the time, the pudendal nerve will be “double crushed”; first by the piriformis, and then between the falciform process of the STL and the obturator internus."

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@jenniferhunter

@wisco50 Myofascial release isn't massage. It's considered manual therapy and my PT codes it that way. They write codes for 15 minute increments or units of treatment, and she also does a few other traditional PT things in the session. My insurance does pay for it. I suggest ask your provider what the codes would be and then call your insurance to see if they cover it and check if they are in network. You can also ask your provider for a cash price. Submitting to insurance is complicated because of the "in-network discount" which cuts the payment down a lot to a negotiated rate which is a contract when the provider becomes an in network provider. Sometimes a cash price is about half the retail price which has to be set higher because of the discounts.

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Aha! Worth trying, having ankle issues from a previous significant injury and thinking I likely have scar tissue in there. It was 6 years ago and betting it’s that and possibly arthritis from injuries sustained.

I equated it with massage because my previous long term WONDERFUL massage therapist did do it, I would be able to feel it sliding, especially on my upper and lower back areas. I’ve actually had another one who did it also. That one moved away and my last one left MT to become an RN. Haven’t found the right person since, sadly.

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@wisco50

Aha! Worth trying, having ankle issues from a previous significant injury and thinking I likely have scar tissue in there. It was 6 years ago and betting it’s that and possibly arthritis from injuries sustained.

I equated it with massage because my previous long term WONDERFUL massage therapist did do it, I would be able to feel it sliding, especially on my upper and lower back areas. I’ve actually had another one who did it also. That one moved away and my last one left MT to become an RN. Haven’t found the right person since, sadly.

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@wisco50 I think you are on to something. Remember to find an MFR therapist PT in your insurance network, call them and ask about the codes for manual therapy, then call your insurance to ask if those codes are covered. Discuss this with the therapist as they know how to document this for the insurance notes. I hope you can find a good therapist. Here is a provider search. http://mfrtherapists.com/

Come on back and share your progress when you can. There is also a lot you can do to self treat like laying on a couple balls. Put them where the tissue is hot, hard or tender. I sometimes use a foam block against a doorway and I press my body into it and push up to cause a shear. It is the shear that starts the fascia sliding. You can Also have a friend help if yo can give them instructions.

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@jenniferhunter

@toula Myofascial therapy might be worth looking into. It is so beneficial to a lot of conditions when our bodies get stuck. Other issues that may affect that area could be pelvic alignment. Here is an article that gets pretty technical written for physical therapists that has a section about pundental nerve entrapment that describes the piriformis muscle as a contributing factor. My PT has me stretch my piriformis, but that should be something to ask your therapist about because of your back surgeries. This article describes various issues that cause symptoms similar to back problems that are caused by the pelvis.

Here is an excerpt from https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
"Most of the time, the pudendal nerve will be “double crushed”; first by the piriformis, and then between the falciform process of the STL and the obturator internus."

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This is not spine related and maybe I should go to a different page, but you seem to know a lot about this myofascial release therapy. I have been having these partial bowel obstructions that are caused by scar tissue on the outside of my small intestines.. I have had surgery to remove this scar tissue, but as soon as 6 weeks after surgery, which includes 2 hours of cutting away scar tissue, the new scar tissue starts to form. Most of these partial bowel obstructions I can handle at home, but I get very dehydrated and I’ve had to go into the hospital several times and have an NG tube put in and go on IV’s for liquid..I can’t usually put anything but popsicles in my stomach at home because of these. Do you think this myofascial release therapy could help with the scar tissue that causes these to occur? I never know when one will hit..just went a year without one and have now had two in the last 6 weeks. They are painful, involve vomiting and diarrhea and land me in bed for 5 days before I can put anything down in my stomach again..going on a liquid then soft diet. Just wonder if this works on breaking up any scar tissue??

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@toula

This is not spine related and maybe I should go to a different page, but you seem to know a lot about this myofascial release therapy. I have been having these partial bowel obstructions that are caused by scar tissue on the outside of my small intestines.. I have had surgery to remove this scar tissue, but as soon as 6 weeks after surgery, which includes 2 hours of cutting away scar tissue, the new scar tissue starts to form. Most of these partial bowel obstructions I can handle at home, but I get very dehydrated and I’ve had to go into the hospital several times and have an NG tube put in and go on IV’s for liquid..I can’t usually put anything but popsicles in my stomach at home because of these. Do you think this myofascial release therapy could help with the scar tissue that causes these to occur? I never know when one will hit..just went a year without one and have now had two in the last 6 weeks. They are painful, involve vomiting and diarrhea and land me in bed for 5 days before I can put anything down in my stomach again..going on a liquid then soft diet. Just wonder if this works on breaking up any scar tissue??

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@toula Myofascial release does break up surgical scar tissue. It may take a bit more work and more sessions, but it helps. I have had neck spine surgery which makes a tight scar and I and my PT periodically stretch this to release the fascia. I think it may be worth trying. You might want to look for an expert level therapist and discuss this with them. This summer, I spent 3 months not being able to walk because of a broken ankle and spent too much time sitting which caused some issues with overly tight hip flexors and my guts getting adhered to my body wall. My PT was able to treat that and resolve it. It is amazing how everything is so interconnected, and when you stop moving and maintaining good posture, it causes problems. A therapist will be able to feel where the issues are.

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@jenniferhunter

@toula Myofascial release does break up surgical scar tissue. It may take a bit more work and more sessions, but it helps. I have had neck spine surgery which makes a tight scar and I and my PT periodically stretch this to release the fascia. I think it may be worth trying. You might want to look for an expert level therapist and discuss this with them. This summer, I spent 3 months not being able to walk because of a broken ankle and spent too much time sitting which caused some issues with overly tight hip flexors and my guts getting adhered to my body wall. My PT was able to treat that and resolve it. It is amazing how everything is so interconnected, and when you stop moving and maintaining good posture, it causes problems. A therapist will be able to feel where the issues are.

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Thank you so much, Jennifer Hunter, for your input on this! I am interested in exploring this further!

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