Excruciating pain from cervical (C7/T1) radiculopathy

Posted by mlerin @mlerin, Nov 4, 2019

I've been in excruciating pain in the right shoulder and throughout the arm and hand for months. MRI diagnosis is C7/T1 and C6-C7 severe foraminal narrowing and stenosis. Had a cervical epidural injection last Thursday and so far no relief. Is prolotherapy or PRP a good option? Any other non-surgical treatments out there that actually work?

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@jenniferhunter

@lebanon100 Thank you, Diana for your concern about my mom.

It sounds like you are doing all the right things for yourself in therapy. If you decide to do back injections, you may want to research that thoroughly because there are some serious risks to them. I have heard of the injections causing arachnoiditis which is an inflammation around the nerves of the lower spine that can form scar tissue and adhere the nerves together. Here is some information.
https://my.clevelandclinic.org/health/diseases/12062-arachnoiditis?msclkid=a8735698a95b11ec90fc254b45a9ca2a
I have had one cervical steroid injection and it caused me a problem and created a new electric burning stabbing pain in my hand that went on for a few months and nothing would stop it. It was the worst pain I had ever experienced and I was shaking uncontrollably and had to work to avoid passing out right after they did it. That was before I had spine surgery, and I said never again. if someone makes a mistake with one of these injections it can cause paralysis or worse. We do have some discussions about the injections, and it is worth noting that the FDA has not approved steroids for injection in the spine, although many doctors do them. It is up to you what risks you want to take. I wanted you to know if you are going to discuss this with your doctor.

These are patient opinions in this discussion, but I have included links to the FDA's statement about steroid injections in the spine.
https://connect.mayoclinic.org/discussion/spinal-epidurals/
Do you have a list of questions ready for your doctor appointment? I would also ask about how your osteoporosis would influence any future decisions about possible spine treatment. Bone quality would be a factor if any hardware would need to be screwed into the bones. ( in case that is offered in the future ) Good luck at your appointment!

Jennifer

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Thank you for all of this information, Jennifer. I certainly will ask the question you suggest at my doctor's appointment. Would you suggest some other questions? After reading that the FDA hasn't approved injections, that gives me pause! I'm Canadian and don't know if injections are approved here. In both instances, I'm wary about getting them especially after hearing about some injurious results. Thanks for your reply.

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@lebanon100

Thank you for all of this information, Jennifer. I certainly will ask the question you suggest at my doctor's appointment. Would you suggest some other questions? After reading that the FDA hasn't approved injections, that gives me pause! I'm Canadian and don't know if injections are approved here. In both instances, I'm wary about getting them especially after hearing about some injurious results. Thanks for your reply.

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And if I do need surgery at some point, I'm frightened, especially at my age.

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@lebanon100

Thank you for all of this information, Jennifer. I certainly will ask the question you suggest at my doctor's appointment. Would you suggest some other questions? After reading that the FDA hasn't approved injections, that gives me pause! I'm Canadian and don't know if injections are approved here. In both instances, I'm wary about getting them especially after hearing about some injurious results. Thanks for your reply.

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@lebanon100 Diana, I found some links that may help. I hope so anyway, because I now how stressful this is to find out something is wrong with your spine and be worried about surgery. I was really afraid of surgery, and I found a way to get through it and face my fears. I wouldn't assume that you are too old for spine surgery. There is a lot to consider in how healthy you are and you sound like you are pretty active. There are also other less invasive procedures that are not major surgery on the spine and spinal discs. You may have choices. I didn't think spine surgery was that bad, but mine was neck surgery. Lumbar spine surgery and recovery is more involved because you are bearing most of your body weight through that area, so you have to consider it carefully.

I looked up a case of a 90 near old man with degenerated lumbar discs, and severe foraminal stenosis and severe facet arthritis (you have both of these) and because he wasn't a good surgical candidate, they did radiofrequency facet rhizotamies ( or neurotomy) which is a procedure to alter the nerves that feel pain in the facet joints. These are different from the nerve roots that exit the spine between the vertebrae. From what I read on Mayo's information, it can provide temporary relief. The nerves can grow back bringing back the pain. The 90 year old man got 10 months or reduced pain before it came back. His case study can be found at this link. https://pro.spineuniverse.com/case-studies/richeimer/severe-low-back-pain-90-year-old-male

Here is some information about radio frequency procedures.
https://connect.mayoclinic.org/blog/adult-pain-medicine/tab/radiofrequency/#ch-tab-navigation
https://www.mayoclinic.org/tests-procedures/radiofrequency-neurotomy/about/pac-20394931
https://www.spine-brain.com/treatments/treatments-spine/radiofrequency-rf-rhizotomy-rf-neurotomy/
Another treatment is a spinal cord stimulator or pain pump. This link explains a lot, and if you scroll to the bottom, there are patient stories about these procedures.
https://connect.mayoclinic.org/blog/adult-pain-medicine/tab/neuromodulation/#ch-tab-navigation
Questions I can think of would be-

You certainly could ask about how much of your pain and symptoms are because of spinal cord compression in the central canal, compared to how much of your pain and symptoms are coming from nerve root compression, and/or facet joints?

You could ask about what treatments can help without major surgery.

You might ask how the degenerating lumbar discs will change over time. Will it get worse and further compress the nerve roots? Will the vertebrae start to fuse together on their own? If that happens, will it be inoperable later?

Incontinence of the bladder or bowel can be a sign of spinal cord compression. If this is a symptom that you have, you could ask if it is related to your spine condition, and is it treatable with surgery or is it permanent?

Ask if there are less invasive procedures that could help.

Ask for a full explanation of any procedure that is offered including the risks, and what is the success rate for the procedure for the specific surgeon you are consulting. Ask if a procedure is a good fit for your activity level and mobility and if it will help you be more mobile or less mobile. (I was kind of impressed that you were hanging from a bar with your arms to stretch your back and walking on a treadmill.)

I know this can be a lot to take in and it can be overwhelming. I hope you have a good compassionate medical team available to help. Do you also have friends or relative who can help take care of you after a procedure or surgery? Will you share what you find out after your appointment?

Good luck.
Jennifer

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@jenniferhunter

@lebanon100 Diana, I found some links that may help. I hope so anyway, because I now how stressful this is to find out something is wrong with your spine and be worried about surgery. I was really afraid of surgery, and I found a way to get through it and face my fears. I wouldn't assume that you are too old for spine surgery. There is a lot to consider in how healthy you are and you sound like you are pretty active. There are also other less invasive procedures that are not major surgery on the spine and spinal discs. You may have choices. I didn't think spine surgery was that bad, but mine was neck surgery. Lumbar spine surgery and recovery is more involved because you are bearing most of your body weight through that area, so you have to consider it carefully.

I looked up a case of a 90 near old man with degenerated lumbar discs, and severe foraminal stenosis and severe facet arthritis (you have both of these) and because he wasn't a good surgical candidate, they did radiofrequency facet rhizotamies ( or neurotomy) which is a procedure to alter the nerves that feel pain in the facet joints. These are different from the nerve roots that exit the spine between the vertebrae. From what I read on Mayo's information, it can provide temporary relief. The nerves can grow back bringing back the pain. The 90 year old man got 10 months or reduced pain before it came back. His case study can be found at this link. https://pro.spineuniverse.com/case-studies/richeimer/severe-low-back-pain-90-year-old-male

Here is some information about radio frequency procedures.
https://connect.mayoclinic.org/blog/adult-pain-medicine/tab/radiofrequency/#ch-tab-navigation
https://www.mayoclinic.org/tests-procedures/radiofrequency-neurotomy/about/pac-20394931
https://www.spine-brain.com/treatments/treatments-spine/radiofrequency-rf-rhizotomy-rf-neurotomy/
Another treatment is a spinal cord stimulator or pain pump. This link explains a lot, and if you scroll to the bottom, there are patient stories about these procedures.
https://connect.mayoclinic.org/blog/adult-pain-medicine/tab/neuromodulation/#ch-tab-navigation
Questions I can think of would be-

You certainly could ask about how much of your pain and symptoms are because of spinal cord compression in the central canal, compared to how much of your pain and symptoms are coming from nerve root compression, and/or facet joints?

You could ask about what treatments can help without major surgery.

You might ask how the degenerating lumbar discs will change over time. Will it get worse and further compress the nerve roots? Will the vertebrae start to fuse together on their own? If that happens, will it be inoperable later?

Incontinence of the bladder or bowel can be a sign of spinal cord compression. If this is a symptom that you have, you could ask if it is related to your spine condition, and is it treatable with surgery or is it permanent?

Ask if there are less invasive procedures that could help.

Ask for a full explanation of any procedure that is offered including the risks, and what is the success rate for the procedure for the specific surgeon you are consulting. Ask if a procedure is a good fit for your activity level and mobility and if it will help you be more mobile or less mobile. (I was kind of impressed that you were hanging from a bar with your arms to stretch your back and walking on a treadmill.)

I know this can be a lot to take in and it can be overwhelming. I hope you have a good compassionate medical team available to help. Do you also have friends or relative who can help take care of you after a procedure or surgery? Will you share what you find out after your appointment?

Good luck.
Jennifer

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Terrific questions Jennifer. I hope that my doctor who's always in a hurry will be open to these questions. They're good ones and important ones. Many thanks for taking the time to reply so generously.

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@lebanon100

Terrific questions Jennifer. I hope that my doctor who's always in a hurry will be open to these questions. They're good ones and important ones. Many thanks for taking the time to reply so generously.

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Yes, Jennifer, I'll share what I find out. For my use only, a question: Are comments printable?

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@lebanon100

Yes, Jennifer, I'll share what I find out. For my use only, a question: Are comments printable?

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@lebanon100 Thank you for asking. You can copy and paste my comments into something like Word and print them out to take to your doctor. You may want to print out some of the information in the links if you need it for reference. Doctors may not have a lot of time, so have a priority list that is most important for your questions. The doctor will need to explain something he suggests doing, so it's OK if you are unfamiliar with it ahead of time. If the doctor doesn't have enough time for your questions, the PA assistant can take more time to explain. Take all the time you need for decisions and get other opinions if surgery is suggested. You can always return for a follow up appointment if you need further discussion with your doctor.

Jennifer

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Good advice, Jennifer. My appointment is now in a week. That will give me some time to consider how to 'approach' my doctor.
Thank you!

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This is all helpful to me as a newly diagnosed DISH patient who has been told I need surgery to remove spurs from 4 discs in my neck and fusions. Seeing a neurosurgeon at Mayo JAX for his take. Would love to hear the experience of others who opted for surgery in JAX, if they are happy they made that choice, and how the recovery was. And how many DISH patients had to have subsequent surgeries for regrowth? I live alone and can't imagine what my post surgical needs might be. Did anyone go into a facility from the hospital short term or have home health? Thanks for any insight.

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I flew to pIttsburg Ohio and had two bone spurs removed by Minimally Invasive Microneurosurgery at Allegheny Hospital).. The surgeon told me there were no guarantees I would have less pain over the Yrs afterward. But ge could guaranteed he would scrape away the bone spurs that were compressing nerves. I have had more pain rather than less but my arm was decompressed so I did not lose muscles in it or have numbness. The problem is that I had to find a neurologist in my hometown to treat post-op nerve pain and he didn’t like treating the pain another Dr caused. I have had chronic nerve pain from this surgery many years and taken Lyrica which helps only nerve pain, not muscle of bone or joint pain. It works by blocking nerve messages going to the brain from the body, including the neck. It helps by about 60%. It has difficult side effects. It makes you act somewhat like a zombie bc it slows down the speed of brain neuron transmissions. All that said, it is better to do all that can ge done by physical therapy before deciding to have surgery.

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@tallyteresa

This is all helpful to me as a newly diagnosed DISH patient who has been told I need surgery to remove spurs from 4 discs in my neck and fusions. Seeing a neurosurgeon at Mayo JAX for his take. Would love to hear the experience of others who opted for surgery in JAX, if they are happy they made that choice, and how the recovery was. And how many DISH patients had to have subsequent surgeries for regrowth? I live alone and can't imagine what my post surgical needs might be. Did anyone go into a facility from the hospital short term or have home health? Thanks for any insight.

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Welcome @tallyteresa. You may wish to connect with other DISH patients in this discussion:
- DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's https://connect.mayoclinic.org/discussion/dish-disese-diffuse-ideopathic-skeletal-hypertrophy-or-foresters/

I believe @joanmahon and @budbarb are patients at the Spine Center at Mayo JAX and maybe @barbara94. Hopefully you can connect.

I think @jenniferhunter can offer insights about recovery and what support you may or may not need.

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