Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

For 12 years I’ve lived with chronic lower abdominal pain. Had an ileostomy for ulcerative colitis in 1972. Perforated and had peritonitis. Severe and extensive Abdominal adhesions. I always thought that the adhesions were causing my pain but two separate doctors are now telling me I have Central Pain syndrome. I am confused and not sure what I need to do

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Hi, I have had 3 back surgeries in under 2 years. My recent one was a laminectomy on l5-s1 in February 2019. I am having more pain now than before surgery. Nerve pain, tingling, burning and numbness from my back down to my foot. I was just looking to see if anyone has any suggestions or similar experiences. I am also having numbness and tingling in my hand which I find odd. I might want to add that I still have a collapsed disc l5-s1 that was not fixed during surgery. Thanks for any help!

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@jdodd81 welcome to our caring community We aren,t Dr,s or medical but offer our experience and what we found to help I understand pain,burning pain numbness and all I just had a bout of sciatica nerve problem It went from buttocks down leg to foot settled behind my knee couldnt walk alot till calf to toes painful Dr gave me leg stretching 3x a day knees to chest roll side to side, leg up pull to chest stretching leg I believe in chiropractor so went to this Dr If stretches dont help see your Dr.Good luck

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@lioness

@jdodd81 welcome to our caring community We aren,t Dr,s or medical but offer our experience and what we found to help I understand pain,burning pain numbness and all I just had a bout of sciatica nerve problem It went from buttocks down leg to foot settled behind my knee couldnt walk alot till calf to toes painful Dr gave me leg stretching 3x a day knees to chest roll side to side, leg up pull to chest stretching leg I believe in chiropractor so went to this Dr If stretches dont help see your Dr.Good luck

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Thank you! I am going to physical therapy, on pain meds and gabapentin for nerve pain but nothing seems to be working. I have a dr appointment tomorrow so hopefully I will get some answers.

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@jdodd81

Thank you! I am going to physical therapy, on pain meds and gabapentin for nerve pain but nothing seems to be working. I have a dr appointment tomorrow so hopefully I will get some answers.

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@jdodd81 Good hope you get some final answers to help I know how misearble you are good luck will you post and let us know how your doing

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@lioness

@jdodd81 Good hope you get some final answers to help I know how misearble you are good luck will you post and let us know how your doing

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Yes ma’am I sure will!

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Good Morning!

I went to the neurologist and neurosurgeon this week. The purpose of this visit was to review tests to see if they could determine why I have neuropathy.
Long story short, my neurosurgeon can do surgery to help me be able to walk for longer periods of time.
There is a slight chance that if I were to have the surgery, the pain may reoccur.
For the first time in over a decade, I am pain free (except for the usual aches and pains of getting older)!!!!!!!!!!!!!!
My husband and I discussed this (as a possibility before the appointment) and decided that I am NOT willing to take the chance.
Being pain free is more important to me than being able to walk longer distances!
However, the neurosurgeon thinks there is more going on in my spine causing all this.
He has me going for another test and in 2 weeks we will go over ALL the reesults of ALL the tests and the neurologist and neurosurgeon will consult.
To be continued……

Happy days!
Ronnie (GRANDMAr)

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@jdodd81

Hi, I have had 3 back surgeries in under 2 years. My recent one was a laminectomy on l5-s1 in February 2019. I am having more pain now than before surgery. Nerve pain, tingling, burning and numbness from my back down to my foot. I was just looking to see if anyone has any suggestions or similar experiences. I am also having numbness and tingling in my hand which I find odd. I might want to add that I still have a collapsed disc l5-s1 that was not fixed during surgery. Thanks for any help!

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@jdodd81 I'm a spine surgery patient for a cervical problem and I have thoracic outlet syndrome. I'm curious, what was the reason to do surgery and not address a collapsed disc in the operated area? What direction did the disc herniate and could it have gotten worse since your procedure? The burning pain is a concern, and your surgery was just last month, right? Have you asked your surgeon about this?

The numbness and tingling in your hand could be something like TOS and stress and the inflammation in your body from just having had surgery will increase the symptoms there. I'm guessing that you are not very active right now and walking might be difficult or painful, and that you may not be trying to maintain good posture in all you do. With TOS, a forward head posture, slouching shoulders or bracing against pain can aggravate it, and it's a postural nerve entrapment between the collar bone and rib cage of nerves and the blood supply to your arm. It may have more symptoms at night because of your arm position while sleeping. If you had an injury like a whiplash as a cause of spine problems, you may have TOS and it is more common in spine injury patients.

When you are healed enough for physical therapy, you might want to consider Myofascial release therapy for surgical scar tissue in the fascia. Here is a lot of information about MFR, and a link to find a therapist in this discussion That I created about MFR. This might be something else to ask your surgeon about.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Here is some information about TOS https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

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@jenniferhunter

@jdodd81 I'm a spine surgery patient for a cervical problem and I have thoracic outlet syndrome. I'm curious, what was the reason to do surgery and not address a collapsed disc in the operated area? What direction did the disc herniate and could it have gotten worse since your procedure? The burning pain is a concern, and your surgery was just last month, right? Have you asked your surgeon about this?

The numbness and tingling in your hand could be something like TOS and stress and the inflammation in your body from just having had surgery will increase the symptoms there. I'm guessing that you are not very active right now and walking might be difficult or painful, and that you may not be trying to maintain good posture in all you do. With TOS, a forward head posture, slouching shoulders or bracing against pain can aggravate it, and it's a postural nerve entrapment between the collar bone and rib cage of nerves and the blood supply to your arm. It may have more symptoms at night because of your arm position while sleeping. If you had an injury like a whiplash as a cause of spine problems, you may have TOS and it is more common in spine injury patients.

When you are healed enough for physical therapy, you might want to consider Myofascial release therapy for surgical scar tissue in the fascia. Here is a lot of information about MFR, and a link to find a therapist in this discussion That I created about MFR. This might be something else to ask your surgeon about.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Here is some information about TOS https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

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@jenniferhunter I had 2 previous microdiscectomies on the left side due to a herniated disc. 3 weeks after I returned to work from the second surgery I fell and messed up the right side. So everything that is being done now is on workman’s comp. They can’t prove that the fall collapsed the disc so workers Comp would not approve for them to fix it. I went and saw my surgeon today and he said there is a large amount of narrowing on the left side from the 2 prior surgeries and a small amount on the right side from my recent surgery. He said that the right side is having to compensate for the left side. He has stopped physical therapy and has ordered a cat scan and a mri. He wants to get a good look at the nerve, see if anything else has collapsed, and make sure I don’t have any small fractures in the vertebrae that he can’t see on the X-ray. He definitely thinks something is going on and just can’t figure out what.

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@jdodd81

@jenniferhunter I had 2 previous microdiscectomies on the left side due to a herniated disc. 3 weeks after I returned to work from the second surgery I fell and messed up the right side. So everything that is being done now is on workman’s comp. They can’t prove that the fall collapsed the disc so workers Comp would not approve for them to fix it. I went and saw my surgeon today and he said there is a large amount of narrowing on the left side from the 2 prior surgeries and a small amount on the right side from my recent surgery. He said that the right side is having to compensate for the left side. He has stopped physical therapy and has ordered a cat scan and a mri. He wants to get a good look at the nerve, see if anything else has collapsed, and make sure I don’t have any small fractures in the vertebrae that he can’t see on the X-ray. He definitely thinks something is going on and just can’t figure out what.

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@jdodd81 I hope they get this figured out for you. If you need another surgical opinion, you should get that from a doctor that you chose. This sounds like a complicated problem and you might need to consult an attorney who does work comp cases. It's hard to be caught in the middle not knowing if work comp will allow you to have the best procedure to solve the problem instead of the economy version, and your medical insuranace won't cover it because of the work accident.. I think a microdiscketomy just removes the part of the disc that extrudes out, but it can happen again. As the disc collapses more, the bones get closer together closing the foramen which are the spaces between vertebral bodies where the nerves exit the spine. That happened in my neck and the disc lost about half it's height, and if I side bent my neck, it hit the nerves of the nerve roots. You can also have bone spurs growing in those spaces too. Is the narrowing scar tissue formation that your doctor mentioned or bone growth? It's also possible to have displacement or slipping of one vertebrae over he other if this has become unstable. Sometimes they need to compare a standing MRI with one when you are reclined because it may show a change of position of the spine. Ask for copies of your imaging when you have it done in case you need it to consult another surgeon for a second opinion.

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@jenniferhunter

@jdodd81 I hope they get this figured out for you. If you need another surgical opinion, you should get that from a doctor that you chose. This sounds like a complicated problem and you might need to consult an attorney who does work comp cases. It's hard to be caught in the middle not knowing if work comp will allow you to have the best procedure to solve the problem instead of the economy version, and your medical insuranace won't cover it because of the work accident.. I think a microdiscketomy just removes the part of the disc that extrudes out, but it can happen again. As the disc collapses more, the bones get closer together closing the foramen which are the spaces between vertebral bodies where the nerves exit the spine. That happened in my neck and the disc lost about half it's height, and if I side bent my neck, it hit the nerves of the nerve roots. You can also have bone spurs growing in those spaces too. Is the narrowing scar tissue formation that your doctor mentioned or bone growth? It's also possible to have displacement or slipping of one vertebrae over he other if this has become unstable. Sometimes they need to compare a standing MRI with one when you are reclined because it may show a change of position of the spine. Ask for copies of your imaging when you have it done in case you need it to consult another surgeon for a second opinion.

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@jenniferhunter I wish I was as knowledgeable as you! That’s excellent information. Thank you! He didn’t mention what form of narrowing it is. I do know that l5-s1 are completely collapsed, no space in between at all. I had an mri in August after my 2nd surgery and the report stated nothing about the disc, or what’s left of it being collapsed. But the surgeon that work Comp is making me see is saying it was and just wasn’t reported. So they had the August mri to kinda compare the October one to after I fell. I’m so confused on everything, I’m tired of being in this pain and just want them to help me.

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@grandmar

Good Morning!

I went to the neurologist and neurosurgeon this week. The purpose of this visit was to review tests to see if they could determine why I have neuropathy.
Long story short, my neurosurgeon can do surgery to help me be able to walk for longer periods of time.
There is a slight chance that if I were to have the surgery, the pain may reoccur.
For the first time in over a decade, I am pain free (except for the usual aches and pains of getting older)!!!!!!!!!!!!!!
My husband and I discussed this (as a possibility before the appointment) and decided that I am NOT willing to take the chance.
Being pain free is more important to me than being able to walk longer distances!
However, the neurosurgeon thinks there is more going on in my spine causing all this.
He has me going for another test and in 2 weeks we will go over ALL the reesults of ALL the tests and the neurologist and neurosurgeon will consult.
To be continued……

Happy days!
Ronnie (GRANDMAr)

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@grandmar
I'm so glad you posted an update. I appreciate your persistence in looking for answers. You are wise to seek opinions and evaluate what is best for you. I can understand your reluctance to do anything that might result in more pain.

Do you mind sharing what type of test you will be having next?

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@jdodd81

@jenniferhunter I wish I was as knowledgeable as you! That’s excellent information. Thank you! He didn’t mention what form of narrowing it is. I do know that l5-s1 are completely collapsed, no space in between at all. I had an mri in August after my 2nd surgery and the report stated nothing about the disc, or what’s left of it being collapsed. But the surgeon that work Comp is making me see is saying it was and just wasn’t reported. So they had the August mri to kinda compare the October one to after I fell. I’m so confused on everything, I’m tired of being in this pain and just want them to help me.

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@jdodd81 Thanks. The problem with being a work comp patient is that the company's "expert" doctors are hired to discredit the patient to prevent the legal liability to the company. They don't want their insurance rates to go up because of a claim, and some companies are self funded, so they are actually paying the medical bills out of their pocket. They might be picking a doctor based on a lower cost to them instead of surgical expertise and experience, and you should not let them make that choice for you.

Work comp also has a award for "Loss of use" of the body part that is based on a scale and a percentage of your salary and accrued years of work. They may not offer that to you unless you file the case with your state's board that handles work comp, and you definitely need an attorney for that. The company has already consulted their own attorney about this. A spine injury can also cause problems years down the road. I am an example of that due to a whiplash 20 years ago that caused the resulting disc collapse and bone spurs leading to spinal cord compression and resulting surgery. You have to think of what is best to do now that will give you the best outcome for your future. Also not all doctors are equally skilled, and some cause problems with surgery. That's why I think you have to do your homework before you choose a surgeon to operate. You will live with the outcome of that. You need to fully understand all the details of any surgery you are considering and the risks and benefits, and the success/failure rate for this specific doctor and the hospital. That is published information. Make sure the surgeon does only spine surgeries and find out how many of these procedures they have done, and ask what other procedures exist for this problem, such as fusion or artificial disc replacement. There are some orthopedic surgeons who do a bit of everything, not just spine surgery and as a result have less experience in it.

Ask questions about what will happen if nothing is done with the collapsed L5S1 disc. If it is "bone on bone", it can fuse itself with bony overgrowth and will be stuck in whatever alignment it has and that may not be good. All of that affects your mobility and employability in other jobs in the future. I know that companies can be held responsible for making something worse in a pre-existing condition in a work related injury, and you need an attorney's advice on that. You have to advocate for yourself and your best outcome that is possible because of what you choose to do now. I do know that surgeries at L5S1 are the most difficult place in the spine to fuse because it is bearing all the body weight, and a twist of the spine can cause screws in the hardware and implants to pull out. That is a common reason for a re-operation at the same level. That's also why you should have the best surgeon you can find. The precise angles of how they place the screws (called pedicle screws) and how dense your bone quality and how much bone you have makes a big difference in holding the screws. I have watched several surgeons presenting talks about this online and read some medical literature. I don't think you have to have treatment or surgery from the surgeon your company selected. Yes, they have to evaluate you, but you should be able to pick your surgeon for any procedure. I had my neck spine surgery at Mayo and was very impressed and had great results. 5 local surgeons refused to help me, and having experienced what really great medical care is, I won't go anywhere else except to Mayo if I need further spine surgery. Here's my story and my surgeon. If you have other questions, I'll do my best to answer them. I would highly recommend him if you consider and can come to Mayo. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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@hopeful33250

@grandmar
I'm so glad you posted an update. I appreciate your persistence in looking for answers. You are wise to seek opinions and evaluate what is best for you. I can understand your reluctance to do anything that might result in more pain.

Do you mind sharing what type of test you will be having next?

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@hopeful33250 I will be having an mri so he can look at the nerves and get a closer look at everything as well as a cat scan so he can see if there are any small fractures that he can’t see on the X-ray.

Liked by lioness

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@hopeful33250

@grandmar
I'm so glad you posted an update. I appreciate your persistence in looking for answers. You are wise to seek opinions and evaluate what is best for you. I can understand your reluctance to do anything that might result in more pain.

Do you mind sharing what type of test you will be having next?

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@hopeful33250
Good Morning,
Right now I am scheduled for an MRI of my t-spine.
Depending on what it shows and what the two doctors decide, more tests might follow.
Thank you for your concern!
Ronnie

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