Dangling arm post C5-C7 ACDF

Rfcomm · 10-13-2014, 07:14 PM

Quote:

Originally Posted by chloecasey

Rfcomm

I also had complications from TOS surgery like Alison stated.
In my case, I had to have 2 extra surgeries after the initial surgery due to "chyle lymph leaks", (Because my history is lengthy, you can view my past posts when you click on my screen name and arrow down to view past posts).
The brachial plexus nerves are vulnerable from being stretched, etc......I had damage to the nerves in the brachial plexus which was evident right after I came back to my room after the 3rd surgery.....my sister noticed it and she said to the nurse "why is her left eyelid drooping?"..."nurse said, was it like that before?" .....my sister said NO !!.....just imagine not once, but 3 times going in the same surgical site !!
Well, fast forward almost 4 years, I still have the droopy eyelid which is more evident when I am really tired & by the way I don't sweat on that side of my face either, which is also associated to the damaged nerves. When I went for eye exam the Doc said that it would not affect my vision in any way.

I know what you mean about the injury not being apparent to people, they just can even imagine what nerve pain is like....if only they could walk in our shoes. It's wise that you are working with attorney for the ssdi, just document everything for the attorney to forward to ssa and it will eventually go thru..count on 2 years from when you applied...you then likely will get a hearing.

With all that went on from my surgeries, etc. I now have more neck pain from scar tissue at the surgical site plus a pretty certain diagnosis of Fibromyalgia, which my current Doc says was triggered from all of the surgeries, nerve damage, etc. On meds to help with getting better sleep without pain although I still wake up in pain.... working on having more positive attitude is difficult when not knowing when the pain creeps up !!

Best to you

chloecasey

So sorry to hear about your ordeal

Thank you for sharing your story with me. The last sentence of you post says it all, trying to stay positive & halfway cheerful when interacting with family/friends is hard because they don't understand. "working on having more positive attitude is difficult when not knowing when the pain creeps up !!" My Horners syndrome does effect my vision at times because the eyelid covers half the pupil at diff times during the day. Some days are better than others. Thanks for sharing your experience with me. I means a lot to have some outside support!

Rfcomm · 10-14-2014, 05:07 PM

Well, I spent an hour+ in my favorite machine today. They performed the MRI with & without contrast. We'll see how long it takes for my inattentive surgeon to get back to me with the results. Either way I'll have a copy for my records to take to another Dr. Still doing research on finding a different surgeon that specializes in "TOS". I would assume that the area I live in would have one specialist between Wake Forrest, UNC or Duke medical. I'll keep all posted about the results when I get them.

Dubious · 10-16-2014, 10:37 PM

Quote:

Originally Posted by Rfcomm

Well, I spent an hour+ in my favorite machine today. They performed the MRI with & without contrast. We'll see how long it takes for my inattentive surgeon to get back to me with the results. Either way I'll have a copy for my records to take to another Dr. Still doing research on finding a different surgeon that specializes in "TOS". I would assume that the area I live in would have one specialist between Wake Forrest, UNC or Duke medical. I'll keep all posted about the results when I get them.

If you have a plexus injury that is that bad, you should be looking at someone who does grafts. Out on the left coast, there is a guy..Stevanovich (sp) I think his name is...who is know for repairing bad plexus injuries with nerve grafts. But at 9 months, I think you are close to the end of the window so you better hustle if you are thinking of going that direction! Otherwise I think you are just stuck with where you are at. Oh...also if you are trying to get better imaging done of the plexus, an MR neurogram is probably something to research..

Rfcomm · 10-19-2014, 06:59 AM

Quote:

Originally Posted by Dubious

If you have a plexus injury that is that bad, you should be looking at someone who does grafts. Out on the left coast, there is a guy..Stevanovich (sp) I think his name is...who is know for repairing bad plexus injuries with nerve grafts. But at 9 months, I think you are close to the end of the window so you better hustle if you are thinking of going that direction! Otherwise I think you are just stuck with where you are at. Oh...also if you are trying to get better imaging done of the plexus, an MR neurogram is probably something to research..

Dubious, I was afraid to hear that, as that's what I've been reading about as of late. Nerve transfers and the time-frame they need to occur in. 4-6 month from onset. My Surgeon has been boondoggling me the last 6 months just telling me to wait... it takes time for nerves to heal. (1mm/day) And I have very long arms. 2cnd NCV & EMG test Dr says nerve damage is more than likely permanent at this time. My Surgeon dismisses this as "it's too early to tell". I'm befuddled at the handling of my case to this point with him! I currently have 2 law firms digging in and asking me for more data, although I'm still searching for one that does have a specialty in trail law as well. As I now believe, this Surgeon has breached my "Standard of Care" in a number of ways at this point!! Still looking for new specialist to determine if I am outside the repair time frame.

Dubious · 10-19-2014, 08:04 PM

Quote:

Originally Posted by Rfcomm

Dubious, I was afraid to hear that, as that's what I've been reading about as of late. Nerve transfers and the time-frame they need to occur in. 4-6 month from onset. My Surgeon has been boondoggling me the last 6 months just telling me to wait... it takes time for nerves to heal. (1mm/day) And I have very long arms. 2cnd NCV & EMG test Dr says nerve damage is more than likely permanent at this time. My Surgeon dismisses this as "it's too early to tell". I'm befuddled at the handling of my case to this point with him! I currently have 2 law firms digging in and asking me for more data, although I'm still searching for one that does have a specialty in trail law as well. As I now believe, this Surgeon has breached my "Standard of Care" in a number of ways at this point!! Still looking for new specialist to determine if I am outside the repair time frame.

I should probably also mention that diagnosis electrically, can be indirect with EMG but you would likely need more specific tests for a plexus injury which is done by virtue of SSEP's. You would have that test done for each suspected peripheral nerve (i.e. radial, axillary, musculocutaneous, etc.) and then compare to the opposite non-symptomatic side. EMG is better than nothing but not good enough, really, so SSEP's are the way to go. NCV is another test and should be done, but is technically limited as you can't access the nerve proximal to the suspected lesion. I think it would be worthwhile to find someone like Stevanovic out your way, get a consult post-haste and wait no longer! You are likely going to have to get pro-active with this if you hope to have it go your way.

Rfcomm · 10-20-2014, 07:18 AM

Quote:

Originally Posted by Dubious

I should probably also mention that diagnosis electrically, can be indirect with EMG but you would likely need more specific tests for a plexus injury which is done by virtue of SSEP's. You would have that test done for each suspected peripheral nerve (i.e. radial, axillary, musculocutaneous, etc.) and then compare to the opposite non-symptomatic side. EMG is better than nothing but not good enough, really, so SSEP's are the way to go. NCV is another test and should be done, but is technically limited as you can't access the nerve proximal to the suspected lesion. I think it would be worthwhile to find someone like Stevanovic out your way, get a consult post-haste and wait no longer! You are likely going to have to get pro-active with this if you hope to have it go your way.

Dubious,

Thanks for that feedback. The horrible thing with my NCV & EMG testing so far, is that it leaves my arm in near constant shooting pain down the arm. This has happened right after my last two tests.The first test took about 2 moths to heal from. I'm still getting above the normal day-to-day pains associated with my arm after my last one on Sept 17th. Have you ran across this before?

Best Regards, Curt

Rfcomm · 10-21-2014, 06:50 AM

Well, Received call from my original Neurosurgeon last evening by phone. He told me the MRI was "negative" after two different reads. One being "his specialist" The neuro-pathways are there in tact he said.. I stated that we know the "pathways" are intact via the NCV test results.(duh) I did state that MRI's have been shown to be in-conclusive in diagnosing the type of injury symptoms I'm having. I had to push him farther as to the next step, (i.e. different imaging/SSEP's) I stated that we both agree that my arm/shoulder as some serious issues. He concurred, and offered to refer me to the "Best" guy he knows in NC, Head of Neurosurgery over at Duke Medical. I'll take the referral I guess, but my trust in him is pretty much non-existent at this time. Talk about feeling like a rat in a cage just now!

Sea Pines 50 · 10-21-2014, 06:02 PM

I sent you a PM (see the upper righthand corner of your screen, just below where you log in).

Quote:

Originally Posted by Rfcomm

Well, Received call from my original Neurosurgeon last evening by phone. He told me the MRI was "negative" after two different reads. One being "his specialist" The neuro-pathways are there in tact he said.. I stated that we know the "pathways" are intact via the NCV test results.(duh) I did state that MRI's have been shown to be in-conclusive in diagnosing the type of injury symptoms I'm having. I had to push him farther as to the next step, (i.e. different imaging/SSEP's) I stated that we both agree that my arm/shoulder as some serious issues. He concurred, and offered to refer me to the "Best" guy he knows in NC, Head of Neurosurgery over at Duke Medical. I'll take the referral I guess, but my trust in him is pretty much non-existent at this time. Talk about feeling like a rat in a cage just now!

Dubious · 10-22-2014, 01:15 AM

Quote:

Originally Posted by Rfcomm

Well, Received call from my original Neurosurgeon last evening by phone. He told me the MRI was "negative" after two different reads. One being "his specialist" The neuro-pathways are there in tact he said.. I stated that we know the "pathways" are intact via the NCV test results.(duh) I did state that MRI's have been shown to be in-conclusive in diagnosing the type of injury symptoms I'm having. I had to push him farther as to the next step, (i.e. different imaging/SSEP's) I stated that we both agree that my arm/shoulder as some serious issues. He concurred, and offered to refer me to the "Best" guy he knows in NC, Head of Neurosurgery over at Duke Medical. I'll take the referral I guess, but my trust in him is pretty much non-existent at this time. Talk about feeling like a rat in a cage just now!

MRI's are anatomic tests so the "pathways" would look intact even on a cadaver! NCV, while a very sensitive test, is more for peripheral nerve injury and not plexus disorder. Really SSEP is better suited for that, although not perfect. And there are no needles associated with it (thought you would like that). I have had all of these tests, BTW, I had shoulder arthroscopy (in addition to C5-6 discectomy/fusion) where the surgeon permanently damaged my plexus, resulting in significant "issues" including CRPS. I get it!

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