1. < Chronic Pain

Long-term forearm pain and numbness

Posted by peteruble @peteruble, Aug 1, 2021

Hi there, I am hoping maybe someone has an understanding of what's going on with my arm. Here's what's going on:

After college I got a job working on computers. Within a month clicking the computer mouse became painful, starting in my finger and eventually settling in my forearm. Unfortunately, this pain has spread to other areas of my life, mostly performing music with a guitar, but also my current occupation as a house painting contractor, chopping up food with a knife, using a pencil, using a computer, and any other similar activities. In a normal state I will have little to no pain. But when performing any of these activities the 'stinging numbness' or pain can set in anywhere from right away to 15 to 20 minutes or longer on a good day.

This condition started around 7 years ago, the treatments and tests I've tried so far are, in order:

-Physical therapy with radial nerve glide stretches, and small electral shock treatments.
-Massage and rolfing therapy.
-Chiropractor treatments.
-Nerve conduction tests showing normal activity in nerves.
-MRIs of forearm and neck areas showing no abnormalities.
-More PT with different therapist who focused whole body and posture rather than just arm.
-Surgery to release radial nerve compression.
-More PT with surgery recovery/hand specialist.
-Series of massage treatments.
-Series of accupuncture treatments.
-More PT with different therapist.
-Read the Explain Pain book, talking about how the brain processes pain.
-Naturopath healer.
-Cut dairy out of diet for 2 months.
-Botox injections at scalene and brachial plexus at Seattle Spine and Sports Medicine.
-Hydro dissection at Swedish in Seattle to loosen fascia around nerve.
-Examination by thoracic outlet specialist, who concluded I don't have thoracic outlet syndrome, although I have wondered about getting another opinon.
-Second surgery to release radial nerve with different surgeon who specializes in these types of surgery.
-Currently seeing another chiropractor who also works with soft tissue.

Unfortunately none of these treatments have helped my condition so far. I'm wondering if there's someone out there who may have an idea what's going on . At any rate, if you made it this far,I appreciate you taking the time to read through this.

Thank you,
Pete

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Aug 1, 2021

@peteruble Wow, you sure have been through a lot. I do appreciate such a detailed post about your treatment history and symptoms. I think you need another opinion about thoracic outlet syndrome. I have TOS, and the activities that you describe that are problematic are all postural things that would increase TOS symptoms because of bending your head forward and elevating your arms. It is tough to find a doctor who really understands TOS and there are numerous compression points that can be involved other that the scalenes. One is under pec minor. One of the problems of any surgery is that is creates scar tissue in the fascia, and with TOS you already have scar tissue and tightness in the fascia, so that can make it worse. The treatment that I do which helps is myofascial release to get the fascia moving again, and to allow the body to be able to resume a normal ergonomic posture. A lot of providers talk about fascia, but do aggressive procedures that cause more fascial issues because the body braces against it or it creates more scar tissue. To release fascia properly takes a shearing force applied firmly but gently and you just wait until the fascia starts to slide. It's a cobweb network that has to change from a semisolid to a liquid. I think your doctor missed the diagnosis which is what usually happens with TOS. I was also told I didn't have it, but I did. My hand used to get blue and cold. It takes time and patience to begin to get better. You will learn things to do at home to self treat by laying on balls, etc.

Mayo is a great place to come for a TOS diagnosis. I came to Mayo Rochester for spine surgery, and they also confirmed my TOS diagnosis in a vascular lab with tiny blood pressure cuffs on each of my fingers and measured the change in blood pressure with different positions of my arm. A neurologist listened to my pulse disappear as I turned my head. I met with a vascular thoracic surgeon. I do physical therapy (long term) with an expert level physical therapist trained in the John Barnes methods. He is the therapist who started this method of treatment. You may want to look through our MFR discussion (link below). The first pages have lots of information links.

Here are some links that may be of interest.
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
MFR Therapist search http://mfrtherapists.com/

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Healing TOS is a whole body approach and needs to get the fascia unstuck and moving again. It is concerning that two radial nerve surgeries did not help which makes this seem like a missed diagnosis for TOS. Those surgeries also created scar tissue that can add to the problem. Does a second opinion at Mayo Clinic Rochester sound like something you may consider? Have you tried the John Barnes approach for fascial release?

REPLY
2 replies
peteruble | @peteruble | Aug 2, 2021
In reply to @jenniferhunter "@peteruble Wow, you sure have been through a lot. I do appreciate such a detailed post..." + (show)
@jenniferhunter

@peteruble Wow, you sure have been through a lot. I do appreciate such a detailed post about your treatment history and symptoms. I think you need another opinion about thoracic outlet syndrome. I have TOS, and the activities that you describe that are problematic are all postural things that would increase TOS symptoms because of bending your head forward and elevating your arms. It is tough to find a doctor who really understands TOS and there are numerous compression points that can be involved other that the scalenes. One is under pec minor. One of the problems of any surgery is that is creates scar tissue in the fascia, and with TOS you already have scar tissue and tightness in the fascia, so that can make it worse. The treatment that I do which helps is myofascial release to get the fascia moving again, and to allow the body to be able to resume a normal ergonomic posture. A lot of providers talk about fascia, but do aggressive procedures that cause more fascial issues because the body braces against it or it creates more scar tissue. To release fascia properly takes a shearing force applied firmly but gently and you just wait until the fascia starts to slide. It's a cobweb network that has to change from a semisolid to a liquid. I think your doctor missed the diagnosis which is what usually happens with TOS. I was also told I didn't have it, but I did. My hand used to get blue and cold. It takes time and patience to begin to get better. You will learn things to do at home to self treat by laying on balls, etc.

Mayo is a great place to come for a TOS diagnosis. I came to Mayo Rochester for spine surgery, and they also confirmed my TOS diagnosis in a vascular lab with tiny blood pressure cuffs on each of my fingers and measured the change in blood pressure with different positions of my arm. A neurologist listened to my pulse disappear as I turned my head. I met with a vascular thoracic surgeon. I do physical therapy (long term) with an expert level physical therapist trained in the John Barnes methods. He is the therapist who started this method of treatment. You may want to look through our MFR discussion (link below). The first pages have lots of information links.

Here are some links that may be of interest.
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
MFR Therapist search http://mfrtherapists.com/

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Healing TOS is a whole body approach and needs to get the fascia unstuck and moving again. It is concerning that two radial nerve surgeries did not help which makes this seem like a missed diagnosis for TOS. Those surgeries also created scar tissue that can add to the problem. Does a second opinion at Mayo Clinic Rochester sound like something you may consider? Have you tried the John Barnes approach for fascial release?

Jump to this post

Hi Jennifer, thank you for the thorough and detailed response. I would certainly consider a second opinion at Mayo Clinic. I've had several massage and physical therapists work with the soft tissue on my arm and shoulders, but to my knowledge I don't believe any of them used the John Barnes method.

Thanks for the links to the other information, I will read over everything this week. Really appreciate the information and feedback, it sounds like you understand what it's like to deal with this kind of stuff. Sure is frustrating. Thanks again.

Pete

REPLY
denise1954 | @denise1954 | Aug 2, 2021
In reply to @jenniferhunter "@peteruble Wow, you sure have been through a lot. I do appreciate such a detailed post..." + (show)
@jenniferhunter

@peteruble Wow, you sure have been through a lot. I do appreciate such a detailed post about your treatment history and symptoms. I think you need another opinion about thoracic outlet syndrome. I have TOS, and the activities that you describe that are problematic are all postural things that would increase TOS symptoms because of bending your head forward and elevating your arms. It is tough to find a doctor who really understands TOS and there are numerous compression points that can be involved other that the scalenes. One is under pec minor. One of the problems of any surgery is that is creates scar tissue in the fascia, and with TOS you already have scar tissue and tightness in the fascia, so that can make it worse. The treatment that I do which helps is myofascial release to get the fascia moving again, and to allow the body to be able to resume a normal ergonomic posture. A lot of providers talk about fascia, but do aggressive procedures that cause more fascial issues because the body braces against it or it creates more scar tissue. To release fascia properly takes a shearing force applied firmly but gently and you just wait until the fascia starts to slide. It's a cobweb network that has to change from a semisolid to a liquid. I think your doctor missed the diagnosis which is what usually happens with TOS. I was also told I didn't have it, but I did. My hand used to get blue and cold. It takes time and patience to begin to get better. You will learn things to do at home to self treat by laying on balls, etc.

Mayo is a great place to come for a TOS diagnosis. I came to Mayo Rochester for spine surgery, and they also confirmed my TOS diagnosis in a vascular lab with tiny blood pressure cuffs on each of my fingers and measured the change in blood pressure with different positions of my arm. A neurologist listened to my pulse disappear as I turned my head. I met with a vascular thoracic surgeon. I do physical therapy (long term) with an expert level physical therapist trained in the John Barnes methods. He is the therapist who started this method of treatment. You may want to look through our MFR discussion (link below). The first pages have lots of information links.

Here are some links that may be of interest.
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
MFR Therapist search http://mfrtherapists.com/

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Healing TOS is a whole body approach and needs to get the fascia unstuck and moving again. It is concerning that two radial nerve surgeries did not help which makes this seem like a missed diagnosis for TOS. Those surgeries also created scar tissue that can add to the problem. Does a second opinion at Mayo Clinic Rochester sound like something you may consider? Have you tried the John Barnes approach for fascial release?

Jump to this post

I don't want to sound stupid, however, what is TOS? I've had this same problem since March of this year but mine is constant. The only way I can describe it is like my arm and hand, down through my fingers are asleep and tingly. I had a MRI of my neck through a neurosurgeon, he suggested an injection in my C7. I went to my MD and a Pain Clinic and it was like they either didn't believe me or had no idea what to prescribe. I'm a senior on so but have great insurance, I can't afford to go to the Mayo or Cleveland Clinics. Any other suggestions?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 2, 2021
In reply to @denise1954 "I don't want to sound stupid, however, what is TOS? I've had this same problem since..." + (show)
@denise1954

I don't want to sound stupid, however, what is TOS? I've had this same problem since March of this year but mine is constant. The only way I can describe it is like my arm and hand, down through my fingers are asleep and tingly. I had a MRI of my neck through a neurosurgeon, he suggested an injection in my C7. I went to my MD and a Pain Clinic and it was like they either didn't believe me or had no idea what to prescribe. I'm a senior on so but have great insurance, I can't afford to go to the Mayo or Cleveland Clinics. Any other suggestions?

Jump to this post

Hello @denise1954, Welcome to Connect. I thought I would jump in and answer for @jenniferhunter who may be able to share some suggestions with you on treatment options.

Thoracic outlet syndrome (TOS) occurs when nerves or blood vessels are compressed by the rib, collarbone or neck muscles at the top of the outlet. The Mayo Clinic website has some home remedies and lifestyle changes that you may find helpful here - https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/diagnosis-treatment/drc-20353994

Did you discuss any alternative treatment suggestions when you met with the neurosurgeon?

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Aug 2, 2021
In reply to @denise1954 "I don't want to sound stupid, however, what is TOS? I've had this same problem since..." + (show)
@denise1954

I don't want to sound stupid, however, what is TOS? I've had this same problem since March of this year but mine is constant. The only way I can describe it is like my arm and hand, down through my fingers are asleep and tingly. I had a MRI of my neck through a neurosurgeon, he suggested an injection in my C7. I went to my MD and a Pain Clinic and it was like they either didn't believe me or had no idea what to prescribe. I'm a senior on so but have great insurance, I can't afford to go to the Mayo or Cleveland Clinics. Any other suggestions?

Jump to this post

@denise1954 Denise, thanks for asking the question. Thanks John for answering. The treatment for thoracic outlet syndrome is usually physical therapy with myofascial release which is what I do. You can have physical therapy even if you don't have a specific diagnosis of TOS, but you need to find a therapist trained in the John Barnes MFR techniques. See the link below to search for a therapist. You may want to read through our discussion on "MFR". bad posture with a forward head and shoulder position will aggravate it. I am not a fan of epidural injections and they carry some serious risks if done improperly. I had one that gave me a new electric shock pain that lasted for several weeks. Steroids are not FDA approved for injecting into the spine although a lot of doctors do that.

Here are some links that may be of interest.
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
MFR Therapist search http://mfrtherapists.com/

REPLY
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