Parsonage-Turner Syndrome
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orion
Parsonage-Turner Syndrome
Dr. Nath has made a tentative diagnosis of Parsonage-Turner Syndrome because of the 6 day lapse between our motorcycle crash and the onset of the pain. Please relate if any of you have the same diagnosis and what your experiences were. I read that 75% have a complete recovery--I am banking on that to be my outcome!!!Thanks for your time and God Bless you in your suffering. Mark
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Parsonage-Turner Syndrome
Hi Mark
I've read your other posts, great news you are already getting some recovery.
I am a bit concerned at the diagnosis of Parsonage Turner, I guess the doctor is too, hence the tentative diagnosis. Trauma brachial plexus injuries (tbpi) do often have an immediate onset of pain
I've read your other posts, great news you are already getting some recovery.
I am a bit concerned at the diagnosis of Parsonage Turner, I guess the doctor is too, hence the tentative diagnosis. Trauma brachial plexus injuries (tbpi) do often have an immediate onset of pain
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Parsonage-Turner Syndrome
oops pressed 'post' after only half a post lol not my day!
Anyway, as I was saying, tbpi often have immediate pain, but lots don't. In fact, if the damage is lower down the nerves than the plexus area, as many as 80% of tbpi have later onset pain. Dr Nath's main area of interest is obstetric injury, he will not have seen the numbers of tbpi that a tbpi dedicated specialist would to see the patterns of pain. Tbpi and obpi are very different injuries in many ways.
Have you thought of getting a second opinion from a tbpi doctor such as the team at the Mayo clinic in Rochester, or Drs Kline and Teil in Louisiana? Both these teams have a great deal of experience in tbpi injuries. Dr Belzburg is another name I hear quite a bit, he's a pain specialist too which always helps in tbpi cases. It does seem as though your injury might recover ok without surgery but I still think it would be worth seeing a dpoctor whose main area of expertise is tbpi injuries, especially while you're still in relatively early days and things can be done if need be.
Hopefully yours is a stretch injury and the pain will reduce as the nerves recover over time. Let us know how you go on.
All the best Jen NZ :0)
Anyway, as I was saying, tbpi often have immediate pain, but lots don't. In fact, if the damage is lower down the nerves than the plexus area, as many as 80% of tbpi have later onset pain. Dr Nath's main area of interest is obstetric injury, he will not have seen the numbers of tbpi that a tbpi dedicated specialist would to see the patterns of pain. Tbpi and obpi are very different injuries in many ways.
Have you thought of getting a second opinion from a tbpi doctor such as the team at the Mayo clinic in Rochester, or Drs Kline and Teil in Louisiana? Both these teams have a great deal of experience in tbpi injuries. Dr Belzburg is another name I hear quite a bit, he's a pain specialist too which always helps in tbpi cases. It does seem as though your injury might recover ok without surgery but I still think it would be worth seeing a dpoctor whose main area of expertise is tbpi injuries, especially while you're still in relatively early days and things can be done if need be.
Hopefully yours is a stretch injury and the pain will reduce as the nerves recover over time. Let us know how you go on.
All the best Jen NZ :0)
Re: Parsonage-Turner Syndrome
Hello Mark, The onset of the typical TBPI pain isn't always immediate. In many cases, it doesn't come on at all until a few days or even weeks after injury. For instance, in my case, the pain wasn't evident until around 3 weeks after injury, and it turned out that I had all 5 nerve roots avulsed.
Thankfully, from reading your other posts, this has not happened in your case, but I really think you should get a second opinion here from a Dr who is more experienced in diagnosing and treating adult traumatic injuries. It is so easy to misdiagnose these injuries and you deserve it to yourself to get the best possible diagnosis and treatment.
I sincerely hope it is something like PT syndrome and you get a full recovery in time...it's looking very hopeful! :0)All the best to you...let us know how you get on...!
Lizzy B
Thankfully, from reading your other posts, this has not happened in your case, but I really think you should get a second opinion here from a Dr who is more experienced in diagnosing and treating adult traumatic injuries. It is so easy to misdiagnose these injuries and you deserve it to yourself to get the best possible diagnosis and treatment.
I sincerely hope it is something like PT syndrome and you get a full recovery in time...it's looking very hopeful! :0)All the best to you...let us know how you get on...!
Lizzy B
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motoxxxracer_34
- Posts: 24
- Joined: Mon Jan 10, 2005 6:57 am
Re: Parsonage-Turner Syndrome
Parsonage-Turner Syndrome, what is this? i had very serious accident with all nerves avulsed
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orion
Re: Parsonage-Turner Syndrome
Dear motoxxxracer_34
Instead of trying to paraphrase an article, just go to http://www.orpha.net/data/patho/GB/uk-turner.pdf
This was a great article that described Parsonage-Turner syndrome very well. Hope this helps. Mark
Instead of trying to paraphrase an article, just go to http://www.orpha.net/data/patho/GB/uk-turner.pdf
This was a great article that described Parsonage-Turner syndrome very well. Hope this helps. Mark
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orion
Re: Parsonage-Turner Syndrome
Dear JennyB,
Many thanks for your reply. I have been in contact with Dr. Nath. I didn't realize his interest isn't necessarily with adults. I am going to check out the Mayo folks- if anyone has addresses or contact numbers I'd be grateful.
I am thankful that my pain has greatly diminished most of the time, which as I read about Parsonage-Turner this fits. An article said that as the paralysis sets in the pain subsides. If I keep active during the day, it isn't bad at all. I am a dentist and have been back to work since last Monday-this has been an expensive vacation- the discomfort I feel is trying to force the muscles to work and they won't budge so I get just a tightness-cramping feeling. Dr. Nath wanted me to see a neurosurgeon to rule out any involvement of the C5 disc that was bulged a little. Thanks for your help, you guys are great. Mark
Many thanks for your reply. I have been in contact with Dr. Nath. I didn't realize his interest isn't necessarily with adults. I am going to check out the Mayo folks- if anyone has addresses or contact numbers I'd be grateful.
I am thankful that my pain has greatly diminished most of the time, which as I read about Parsonage-Turner this fits. An article said that as the paralysis sets in the pain subsides. If I keep active during the day, it isn't bad at all. I am a dentist and have been back to work since last Monday-this has been an expensive vacation- the discomfort I feel is trying to force the muscles to work and they won't budge so I get just a tightness-cramping feeling. Dr. Nath wanted me to see a neurosurgeon to rule out any involvement of the C5 disc that was bulged a little. Thanks for your help, you guys are great. Mark
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orion
Re: Parsonage-Turner Syndrome
Hi lizzyb,
Thanks for your reply..I didn't know you could have delayed onset from tbpi--seems like you would know immediately if not sooner when a nerve is avulsed. All the more reason to get to someone experienced in tpbi injuries. I would be interested to know what your pain life is like. I feel like i am very fortunate and should just shut up. I really appreciate your help. I hope your day is blessed. Mark
Thanks for your reply..I didn't know you could have delayed onset from tbpi--seems like you would know immediately if not sooner when a nerve is avulsed. All the more reason to get to someone experienced in tpbi injuries. I would be interested to know what your pain life is like. I feel like i am very fortunate and should just shut up. I really appreciate your help. I hope your day is blessed. Mark
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Parsonage-Turner Syndrome
Heres a story from the Mayo about John, whose mother Ellenb posts here. It maskes for inspirational reading. Contact details are at the bottom of the page. http://www.mayoclinic.org/patientstories/johnfloyd.html
Since posting yesterday I have looked into things more, and pparently only about 50% of tbpi have immediate pain, the rest can take as long as 3 weeks to start up. As the nerves recover the pain often subsides, if your injury is milder and recovering, then maybe that's why your pain is reducing.
Of course, I'm not a doctor, I am just posting to point out that delayed onset of pain would not be enough to diagnose PT syndrome, as it is normal in tbpi. It really doesn't help chasing various syndromes around the internet (there are hundreds!) I truly hope your recovery continues and the pain subsides.
All the best
Jennyb NZ :0)
Since posting yesterday I have looked into things more, and pparently only about 50% of tbpi have immediate pain, the rest can take as long as 3 weeks to start up. As the nerves recover the pain often subsides, if your injury is milder and recovering, then maybe that's why your pain is reducing.
Of course, I'm not a doctor, I am just posting to point out that delayed onset of pain would not be enough to diagnose PT syndrome, as it is normal in tbpi. It really doesn't help chasing various syndromes around the internet (there are hundreds!) I truly hope your recovery continues and the pain subsides.
All the best
Jennyb NZ :0)