Chronic pain and spinal fusion

Posted by lynn12 @lynn12, Aug 16, 2018

Hi
I am wondering if there is anyone out there has experienced what I am dealing with? In 2006 I had a spinal fusion from T2 through L4. Actually the fusion failed and after one year had to be repeated, this time using a bone morphosizing protein that ensured fusion. Like most who have endured a surgery like this I am left with chronic pain. I have through the years also developed quite a dowagers hump. The surgeon explained that my problem went up so high that she actually bent the rod a bit forward during surgery otherwise noting that I may become off balance. As the years have gone by this hump is looking more and more pronounced. I absolutely hate it and feel so ugly, can anything safely be done or does it involve another dangerous surgical procedure? As you can imagine the thought of more surgery is frightening to me. What complicates matters is I am on Warfarin (blood thinner) due to aortic valve repelacement in 2001. Any surgery for me is always more complicated.

@ceceilia

I had l4 through S1 spinal fusion surgery 5 months ago and still in pain. Is there anyone else who experience pain that long after surgery? Is it normal ?

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Yes, I had a spinal fusion in 2019 after a cancerous tumor fractured my spine. T12 to c2. I still have chronic back pain. Take your time and try physical therapy when your doctor allows it. I started walking outside as soon as the doctor let me. I feel as if I can't keep my posture erect. It is a slow healing process and everyone will heal differently.
Good luck.

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Has anyone had fusion hardware removed? Hubby has a screw out of place and a rod unattached. We are not sure if this is causing his increasing pain and inability to stand for a few minutes or to walk (like from the house to the mailbox). His fusion was in 2007–L4-L5. He has had a failed spinal stimulator (broken leads and migrating generator) and has tried many things for pain–prolotherapy, laser, shock wave. Nothing helps. Is currently trying acupuncture. We are curious about removal of hardware with subsequernt improvement in pain.

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@gran61

Has anyone had fusion hardware removed? Hubby has a screw out of place and a rod unattached. We are not sure if this is causing his increasing pain and inability to stand for a few minutes or to walk (like from the house to the mailbox). His fusion was in 2007–L4-L5. He has had a failed spinal stimulator (broken leads and migrating generator) and has tried many things for pain–prolotherapy, laser, shock wave. Nothing helps. Is currently trying acupuncture. We are curious about removal of hardware with subsequernt improvement in pain.

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This is a previous discussion which may help, @gran61
https://connect.mayoclinic.org/discussion/hardware-removal/
Members like @cgmc and @irene5 may be able to offer some feedback as well.

What does your husband's surgeon feel is best?

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I have a dilemma which I hope I can get some feedback for. I had laminectomy and fusion on C3-C6 for cervical stenosis in 2016 which has started aching again with deterioration of dexterity in hands. In April of 2017 I had two stage laminectomy and fusion of T11 – L5 because of unstable scoliosis and stenosis. a year later I started having pain in my lumbar back and left leg sciatica. Tests showed that I had developed pseudarthrosis and a hemorrhagic cyst at L5. I had revision surgery in Feb. 2019 with larger screws placed in the lumbar area and rods extended into my pelvic bones. The pain was worse than ever before and tests showed "lucencies" at several levels of screws. In September of 2019 I started having severe pain in my thoracic spine which radiated around to my ribs and whatever was within them more on the right side of my torso. My neurosurgeon would not acknowledge that the sciatica hadn't resolved nor the new pain in my mid back. On Jan. 30, 2019 neurosurgeon gave me a choice of replacing the screws again with larger ones, having a spinal cord stimulation device implanted or wait and see. I chose to wait and see. I finally got an appointment with a physiatrist who after my being unable to do P.T. ordered an MRI of my thoracic spine. It showed a herniated disc at T11 with compression of the nerve root. At this point I have had epidural steroid shots in T11 and L5 which didn't help at all with the severe pain this is causing, I'm afraid that another surgery is the only thing that is going to alleviate the pain and I don't think I can get through another surgery considering the state of deconditioning my body is now in. I have been looking into thoracic spine herniation surgery and unless I can find a surgeon who can do minimally invasive "video assisted thoracic surgery, the alternative of anterior thoracic open chest surgery is something I won't make it through. Does anyone have any advice for this situation or can suggest a way of finding surgeons in my state who are doing "VATS" surgery? If I have to, I will travel to where ever I need to. Thank you for any help!

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@suzfuse46

I have a dilemma which I hope I can get some feedback for. I had laminectomy and fusion on C3-C6 for cervical stenosis in 2016 which has started aching again with deterioration of dexterity in hands. In April of 2017 I had two stage laminectomy and fusion of T11 – L5 because of unstable scoliosis and stenosis. a year later I started having pain in my lumbar back and left leg sciatica. Tests showed that I had developed pseudarthrosis and a hemorrhagic cyst at L5. I had revision surgery in Feb. 2019 with larger screws placed in the lumbar area and rods extended into my pelvic bones. The pain was worse than ever before and tests showed "lucencies" at several levels of screws. In September of 2019 I started having severe pain in my thoracic spine which radiated around to my ribs and whatever was within them more on the right side of my torso. My neurosurgeon would not acknowledge that the sciatica hadn't resolved nor the new pain in my mid back. On Jan. 30, 2019 neurosurgeon gave me a choice of replacing the screws again with larger ones, having a spinal cord stimulation device implanted or wait and see. I chose to wait and see. I finally got an appointment with a physiatrist who after my being unable to do P.T. ordered an MRI of my thoracic spine. It showed a herniated disc at T11 with compression of the nerve root. At this point I have had epidural steroid shots in T11 and L5 which didn't help at all with the severe pain this is causing, I'm afraid that another surgery is the only thing that is going to alleviate the pain and I don't think I can get through another surgery considering the state of deconditioning my body is now in. I have been looking into thoracic spine herniation surgery and unless I can find a surgeon who can do minimally invasive "video assisted thoracic surgery, the alternative of anterior thoracic open chest surgery is something I won't make it through. Does anyone have any advice for this situation or can suggest a way of finding surgeons in my state who are doing "VATS" surgery? If I have to, I will travel to where ever I need to. Thank you for any help!

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So sorry darling. All I can offer are my prayers for you.

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@suzfuse46

I have a dilemma which I hope I can get some feedback for. I had laminectomy and fusion on C3-C6 for cervical stenosis in 2016 which has started aching again with deterioration of dexterity in hands. In April of 2017 I had two stage laminectomy and fusion of T11 – L5 because of unstable scoliosis and stenosis. a year later I started having pain in my lumbar back and left leg sciatica. Tests showed that I had developed pseudarthrosis and a hemorrhagic cyst at L5. I had revision surgery in Feb. 2019 with larger screws placed in the lumbar area and rods extended into my pelvic bones. The pain was worse than ever before and tests showed "lucencies" at several levels of screws. In September of 2019 I started having severe pain in my thoracic spine which radiated around to my ribs and whatever was within them more on the right side of my torso. My neurosurgeon would not acknowledge that the sciatica hadn't resolved nor the new pain in my mid back. On Jan. 30, 2019 neurosurgeon gave me a choice of replacing the screws again with larger ones, having a spinal cord stimulation device implanted or wait and see. I chose to wait and see. I finally got an appointment with a physiatrist who after my being unable to do P.T. ordered an MRI of my thoracic spine. It showed a herniated disc at T11 with compression of the nerve root. At this point I have had epidural steroid shots in T11 and L5 which didn't help at all with the severe pain this is causing, I'm afraid that another surgery is the only thing that is going to alleviate the pain and I don't think I can get through another surgery considering the state of deconditioning my body is now in. I have been looking into thoracic spine herniation surgery and unless I can find a surgeon who can do minimally invasive "video assisted thoracic surgery, the alternative of anterior thoracic open chest surgery is something I won't make it through. Does anyone have any advice for this situation or can suggest a way of finding surgeons in my state who are doing "VATS" surgery? If I have to, I will travel to where ever I need to. Thank you for any help!

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Hello @suzfuse46 and welcome to Mayo Clinic Connect. You have certainly been through a lot and can understandably see why are you are hesitant without exploring all your options.

I am going to bring in @jenniferhunter who may be able to lend her experiences your way.

Can you share what state you are in so that members can provide recommendations based on geography?

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@amandajro

Hello @suzfuse46 and welcome to Mayo Clinic Connect. You have certainly been through a lot and can understandably see why are you are hesitant without exploring all your options.

I am going to bring in @jenniferhunter who may be able to lend her experiences your way.

Can you share what state you are in so that members can provide recommendations based on geography?

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I live in Grand Rapids, Michigan

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@amandajro

Hello @suzfuse46 and welcome to Mayo Clinic Connect. You have certainly been through a lot and can understandably see why are you are hesitant without exploring all your options.

I am going to bring in @jenniferhunter who may be able to lend her experiences your way.

Can you share what state you are in so that members can provide recommendations based on geography?

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@suzfuse46 Thanks, Amanda for bringing me into this conversation. Sue, you have an extensive history of spine surgeries and with your neurosurgeon not acknowledging your condition, I think you are right in seeking another opinion. I did some searching of medical literature on Video Assisted Thoracic Surgery (VATS) for spine surgery, and then in looking up the authors, I found medical centers that use this method for video assisted surgeries. I found a paper authored by Mayo surgeons for VATS scoliosis pediatric surgery and the Mayo website does indicate VATS can be done for spine surgeries. I found VATS spine literature authored by surgeons at UC Davis, and Cedars-Siani in California.
https://thejns.org/focus/view/journals/neurosurg-focus/36/3/article-pE8.xml
I had also responded to your personal message. I can inquire with the Mayo surgeon who did my cervical surgery to ask about surgeons there who might be using this VATS for adult thoracic spine surgeries.

You need a high level spine deformity expert who takes complex cases. I found a new video with a presentation by Dr. Patrick Johnson from Cedars- Siani in Los Angeles that discusses video assisted thoracic spine surgeries and it shows surgery photos and videos, so be prepared to see those if you watch this video.
https://www.youtube.com/watch?v=Z44zfcIp_xw

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@jenniferhunter

@suzfuse46 Thanks, Amanda for bringing me into this conversation. Sue, you have an extensive history of spine surgeries and with your neurosurgeon not acknowledging your condition, I think you are right in seeking another opinion. I did some searching of medical literature on Video Assisted Thoracic Surgery (VATS) for spine surgery, and then in looking up the authors, I found medical centers that use this method for video assisted surgeries. I found a paper authored by Mayo surgeons for VATS scoliosis pediatric surgery and the Mayo website does indicate VATS can be done for spine surgeries. I found VATS spine literature authored by surgeons at UC Davis, and Cedars-Siani in California.
https://thejns.org/focus/view/journals/neurosurg-focus/36/3/article-pE8.xml
I had also responded to your personal message. I can inquire with the Mayo surgeon who did my cervical surgery to ask about surgeons there who might be using this VATS for adult thoracic spine surgeries.

You need a high level spine deformity expert who takes complex cases. I found a new video with a presentation by Dr. Patrick Johnson from Cedars- Siani in Los Angeles that discusses video assisted thoracic spine surgeries and it shows surgery photos and videos, so be prepared to see those if you watch this video.
https://www.youtube.com/watch?v=Z44zfcIp_xw

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Thank you again!!! I have been trying to find information on the VATS procedure but the internet medical sites haven't been a good resource. My neighbor's son-in-law works for Medtronic as a tech who assists neurosurgeons locally using their spine devices but he hasn't been able to find doctors who do this specific surgery here in west Michigan. I will be thankful for any additional information you can send my way. My main concern is that on a recent MRI, it shows a "right central T10-T11 disc extrusion, migration compressing traversing right T11 nerve root lateral recess. Small left central T10-T11 disc extrusion. Mild to moderate T10-T11 central stenosis with subtotal CSF effacement, no cord deformity or signal abnormality. Moderate right foraminal stenosis." It would be very helpful to ask Dr. Fogelson about surgeons at Mayo doing surgery to access this type of herniation. (Your painting of him is so very well done!) Sue K.

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@suzfuse46

Thank you again!!! I have been trying to find information on the VATS procedure but the internet medical sites haven't been a good resource. My neighbor's son-in-law works for Medtronic as a tech who assists neurosurgeons locally using their spine devices but he hasn't been able to find doctors who do this specific surgery here in west Michigan. I will be thankful for any additional information you can send my way. My main concern is that on a recent MRI, it shows a "right central T10-T11 disc extrusion, migration compressing traversing right T11 nerve root lateral recess. Small left central T10-T11 disc extrusion. Mild to moderate T10-T11 central stenosis with subtotal CSF effacement, no cord deformity or signal abnormality. Moderate right foraminal stenosis." It would be very helpful to ask Dr. Fogelson about surgeons at Mayo doing surgery to access this type of herniation. (Your painting of him is so very well done!) Sue K.

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@suzfuse46 Thank you Sue. I also have a video of me painting the portrait which you might enjoy. You can access it on this page of the Art for Healing discussion. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=29

I was 11 months post op at the time and getting it done in time for my one year follow up. This was my first post op painting and I had set the bar pretty high for myself. When you are ready, I'll certainly copy Dr. Fogelson on everything you have written and see what he says. I certainly understand your concerns and it is good that you are advocating for yourself and looking for the best possible solution instead of settling for what your surgeon proposed. I'm glad I didn't have surgery with a surgeon who would not listen and offer choices to me. My physical therapist has recommended several patients to Dr. Fogelson because of my experience and he has helped them all.

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@jenniferhunter

@suzfuse46 Thank you Sue. I also have a video of me painting the portrait which you might enjoy. You can access it on this page of the Art for Healing discussion. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=29

I was 11 months post op at the time and getting it done in time for my one year follow up. This was my first post op painting and I had set the bar pretty high for myself. When you are ready, I'll certainly copy Dr. Fogelson on everything you have written and see what he says. I certainly understand your concerns and it is good that you are advocating for yourself and looking for the best possible solution instead of settling for what your surgeon proposed. I'm glad I didn't have surgery with a surgeon who would not listen and offer choices to me. My physical therapist has recommended several patients to Dr. Fogelson because of my experience and he has helped them all.

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Hello Jennifer, I have finished reading the information and watching the surgery video which were very informative. Viewing these also led to my finding much other info about spine surgery. Best of all, I watched with mesmerizing fascination as you brought the portrait of Dr. Fogelson to life (with water colors which has always seemed to me to be one of the more difficult mediums to work with). I will be in touch after my appointment with my physiatrist on Tuesday. Thanks again…Sue

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@suzfuse46

Hello Jennifer, I have finished reading the information and watching the surgery video which were very informative. Viewing these also led to my finding much other info about spine surgery. Best of all, I watched with mesmerizing fascination as you brought the portrait of Dr. Fogelson to life (with water colors which has always seemed to me to be one of the more difficult mediums to work with). I will be in touch after my appointment with my physiatrist on Tuesday. Thanks again…Sue

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@suzfuse46 Thank you for your kind words about the portrait. You can also find pictures of it with Dr. Fogelson and me on the first page of the Art for Healing discussion when he saw it the first time at my one year followup. I am glad you found a lot of spine information from the video link. There are lots of medical videos in the Seattle Science Foundation's You tube page that are very informative. There are other spine conferences too, but they may charge for access to watch the videos. I learned a lot about spine surgery and how surgeons evaluate problems by watching those videos. It's always a good idea to search for video presentations by surgeons you are considering seeing for a problem. Surgeons who are well respected are teaching at those conferences and also teaching their surgical techniques at cadaver labs at the conferences and explaining how they select patients for those procedures. That may sound shocking to some people, but that is how surgeons learn.

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