Myelography results: recovery update: please help
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siamerican
Myelography results: recovery update: please help
I completed my dreaded myrogram ct scan the other day and got the film/report back, waiting to meet with the doc to review it / hopefully get a queue for surgery finally, though I'm just so anxious. I tried to research understand myself but there is a big chance I'll misinterpret the results.
Hopefully someone here might be able to make sense of the medical jargon--this anticipation is killing me and having to wait a week to find out what my doc says, who will most likely be in a rush when I see him. Anyway, I transcribed the results here
There is a 1.4 x 0.6cm well defined lobulated outpouching lesion arose from the left lateral aspect of the thecal sac at C7/T1 level extending into adjacent left C7/T1 neural foramen. The rest of intrathecal subarchnoid space and cervical root sleeves appear normal. Irregular contour at left anterolateral aspect of spinal cprd at C6-7 level is seen. The rest of cervical cord appears normal.
There is a normal cervical alignment. The atlanto-axial joint is intact. No fracture line is seen. The intervertebral disc spaces are within normal limits. No narrowing of the neural foramina is demonstrated. Paravertebral soft tissue appears unremarkable.
Impression: A 1.4 x 0.6cm well defined lobulated outpouching lesion arose from the left lateral aspect of the thecal sac at C7/T1 level extending into adjacent left C7/T1 neural foramen, representing pseudomeningocele.
Irregular contour of left anterolateral aspect of spinal cord at C6-7 level, possibly insults from previous injury .
As looking up pseudomeningocele, I assume its suggesting that my C7, C8, and T1 are all avulsed / unspareable... The MRI I took several months back suggested that c8 and t1 were avulsed, but it is all so confusing as I have recovered function in my ulnar and median nerves only, though nothing in the radial/musculotaneous nerves as suggested from my nerve conduction/emg tests.
Well, I can flex my wrist, use my thumb/pointing finger now enough to even play a psp, and if I really force it can hold a few chords on guitar (A and E minor) though my flail arm can't support the forced positions for long.
My shoulder still sublaxes if I let it hang. If I tap/poke on certain parts of my shoulder / pecs / upper arm, I feel tingling sensations shooting down other parts of my lower arm and hand. Doc says this is supposed to suggest signs of nerve regeneration.
when trying to open my hand, the pointing finger/pinky open nearly all the way, though middle and ring only about 70 percent, though can close all my fingers in a fist. from the wrist up, still zero function, even in water. I'm now 4.5 months post accident now.
Please, any feedback/similar experiences, stories to share. Tis close time for me to be considering reconstructive surgery queue which if all goes swell will have me on the table just at the 6 month post trauma window, which part of me doesn't want to go through for various reasons, mainly the risk of losing everything I've naturally regained to this point... it is been long road, and still much longer to go.... waiting for some light from you fellow tbpi around the globe.
Steven in Thailand
Hopefully someone here might be able to make sense of the medical jargon--this anticipation is killing me and having to wait a week to find out what my doc says, who will most likely be in a rush when I see him. Anyway, I transcribed the results here
There is a 1.4 x 0.6cm well defined lobulated outpouching lesion arose from the left lateral aspect of the thecal sac at C7/T1 level extending into adjacent left C7/T1 neural foramen. The rest of intrathecal subarchnoid space and cervical root sleeves appear normal. Irregular contour at left anterolateral aspect of spinal cprd at C6-7 level is seen. The rest of cervical cord appears normal.
There is a normal cervical alignment. The atlanto-axial joint is intact. No fracture line is seen. The intervertebral disc spaces are within normal limits. No narrowing of the neural foramina is demonstrated. Paravertebral soft tissue appears unremarkable.
Impression: A 1.4 x 0.6cm well defined lobulated outpouching lesion arose from the left lateral aspect of the thecal sac at C7/T1 level extending into adjacent left C7/T1 neural foramen, representing pseudomeningocele.
Irregular contour of left anterolateral aspect of spinal cord at C6-7 level, possibly insults from previous injury .
As looking up pseudomeningocele, I assume its suggesting that my C7, C8, and T1 are all avulsed / unspareable... The MRI I took several months back suggested that c8 and t1 were avulsed, but it is all so confusing as I have recovered function in my ulnar and median nerves only, though nothing in the radial/musculotaneous nerves as suggested from my nerve conduction/emg tests.
Well, I can flex my wrist, use my thumb/pointing finger now enough to even play a psp, and if I really force it can hold a few chords on guitar (A and E minor) though my flail arm can't support the forced positions for long.
My shoulder still sublaxes if I let it hang. If I tap/poke on certain parts of my shoulder / pecs / upper arm, I feel tingling sensations shooting down other parts of my lower arm and hand. Doc says this is supposed to suggest signs of nerve regeneration.
when trying to open my hand, the pointing finger/pinky open nearly all the way, though middle and ring only about 70 percent, though can close all my fingers in a fist. from the wrist up, still zero function, even in water. I'm now 4.5 months post accident now.
Please, any feedback/similar experiences, stories to share. Tis close time for me to be considering reconstructive surgery queue which if all goes swell will have me on the table just at the 6 month post trauma window, which part of me doesn't want to go through for various reasons, mainly the risk of losing everything I've naturally regained to this point... it is been long road, and still much longer to go.... waiting for some light from you fellow tbpi around the globe.
Steven in Thailand
-
Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: Myelography results: recovery update: please help
Steven,
First things first, I'm wishing you the best with all this crap you have to deal with! I know it sucks beyond belief, but it will get better, I promise. Second, I'm not doctor or in the medical profession and am self taught at understanding this stuff. That said, the language used below describes what is present when there is a rupture in the dura mater (membrane surrounding spinal cord) and the spinal fluid is able to leak out into the surrounding tissue (neck muscles etc.). This usually indicates an avulsion or partial avulsion.
============================================
http://www.uscneurosurgery.com/glossary ... gocele.htm
Brachial plexus avulsion injury
Pseudomeningoceles can form around the site of nerve avulsion which usually avulses the dura leaving a hole large enough to allow outflow and collection of CSF (Cerebral Spinal Fluid).
****A patient with a brachial plexus injury has a very poor prognosis for recovery with or without surgery if a pseudomeningocele is present.****
============================================
in the image on the site below there is a representation of a pseudomeningocele in the brachial plexus.
http://brachialplexus.wustl.edu/neurosu ... html#preop
===========================================
and here are two images of the same injury. 1st one is a vertical cross section of the neck area, with the head/brain being at the top, and the second is a horizontal cross section through the neck just above the shoulders. The arrows in the image indicate where the leak in the spinal fluid is (pseudomeningocele), and it was determined that the injury was in fact a root avulsion.
http://www.urmc.rochester.edu/smd/Rad/n ... case30.htm
if you read the last part of that page linked above in the "Discussion", it states the a pseudomeningocele can occur with out an avulsion and vice versa, so there is hope.
=============================================
I have to say that the movement you have is not indicative of an avulsion in the C8 or T1 (C7/T1) nerve roots, since those nerves are the primary nerves for hand function, maybe C7. I had C5, C6, C7 avulsed and C8 & T1 stretched, and I have limited but useful hand function, very similar to what you described. My Myelogram showed avulsions or pseudomeningoceles at C5 & C6 but not C7 which was determined avulsed during exploratory surgery.
In my opinion, much like the report states in the above link, Myelgrams are the best source of diagnosis with out going in for surgery. They are still inconclusive, but at least they'll get you closer to knowing what is going on in there.
I hope this helps some what and I hope that you get the best possible recovery. My advice, as always, is don't give up, find the best doctors you can get your hand on, and learn as much as you can. This usually impresses the doctors and they hold more interest in your case, as they see you are willing to take personal interest in your own health and are willing to step into their world a little bit. These guys train for years upon years, and then some and a lot more, so showing respect for that and for one's own situation has gotten me very good attention from some great specialists.
Best of luck!
Christopher
as I write this I'm back home where I grew up, in the New Hampshire mountains. I'm taking care of my mother after a surgery she had, and I'm fixing up my old dust covered motorcycle from the barn to ride the country roads of New England again! Obviously my brain has been injured and my body damaged, but my spirit remains intact!
First things first, I'm wishing you the best with all this crap you have to deal with! I know it sucks beyond belief, but it will get better, I promise. Second, I'm not doctor or in the medical profession and am self taught at understanding this stuff. That said, the language used below describes what is present when there is a rupture in the dura mater (membrane surrounding spinal cord) and the spinal fluid is able to leak out into the surrounding tissue (neck muscles etc.). This usually indicates an avulsion or partial avulsion.
============================================
http://www.uscneurosurgery.com/glossary ... gocele.htm
Brachial plexus avulsion injury
Pseudomeningoceles can form around the site of nerve avulsion which usually avulses the dura leaving a hole large enough to allow outflow and collection of CSF (Cerebral Spinal Fluid).
****A patient with a brachial plexus injury has a very poor prognosis for recovery with or without surgery if a pseudomeningocele is present.****
============================================
in the image on the site below there is a representation of a pseudomeningocele in the brachial plexus.
http://brachialplexus.wustl.edu/neurosu ... html#preop
===========================================
and here are two images of the same injury. 1st one is a vertical cross section of the neck area, with the head/brain being at the top, and the second is a horizontal cross section through the neck just above the shoulders. The arrows in the image indicate where the leak in the spinal fluid is (pseudomeningocele), and it was determined that the injury was in fact a root avulsion.
http://www.urmc.rochester.edu/smd/Rad/n ... case30.htm
if you read the last part of that page linked above in the "Discussion", it states the a pseudomeningocele can occur with out an avulsion and vice versa, so there is hope.
=============================================
I have to say that the movement you have is not indicative of an avulsion in the C8 or T1 (C7/T1) nerve roots, since those nerves are the primary nerves for hand function, maybe C7. I had C5, C6, C7 avulsed and C8 & T1 stretched, and I have limited but useful hand function, very similar to what you described. My Myelogram showed avulsions or pseudomeningoceles at C5 & C6 but not C7 which was determined avulsed during exploratory surgery.
In my opinion, much like the report states in the above link, Myelgrams are the best source of diagnosis with out going in for surgery. They are still inconclusive, but at least they'll get you closer to knowing what is going on in there.
I hope this helps some what and I hope that you get the best possible recovery. My advice, as always, is don't give up, find the best doctors you can get your hand on, and learn as much as you can. This usually impresses the doctors and they hold more interest in your case, as they see you are willing to take personal interest in your own health and are willing to step into their world a little bit. These guys train for years upon years, and then some and a lot more, so showing respect for that and for one's own situation has gotten me very good attention from some great specialists.
Best of luck!
Christopher
as I write this I'm back home where I grew up, in the New Hampshire mountains. I'm taking care of my mother after a surgery she had, and I'm fixing up my old dust covered motorcycle from the barn to ride the country roads of New England again! Obviously my brain has been injured and my body damaged, but my spirit remains intact!
Re: Myelography results: recovery update: please help
Hi Steven, I have the same deal as you with the taping and the sensation that runs to my hand and arm. I didn't know that it was part of the nerve regeneration though. A little exercise that i do with to help with my shoulder sublaxing is to use the blow up floaties that kids use on their upper arms. These hold my hand afloat and do seated rows sitting in a pool. I also a elastic band for resitance. I am five and a half months post accident and possible a month away from surgery.
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siamerican
Re: Myelography results: recovery update: please help
Thanks Christopher and Troy for your replies.
Regarding C8/T1, that is the exact same thing my current doc said that from my hand/wrist movements, he was sure that C8 and T1 were firing something. Well I'm prepared for the worst, that c5 6 and 7 will be avulsed, but hope for the best. Like I said, my biggest worry is that if/when they open me up, I fear I'll wakeup worse off with zero hand/wrist/finger function... risks...
My myelography headaches seem to be gone now, knock on wood, and tomorrow's full day of work will be the test, then come tuesday evening, i'll see what my doc has to say--hopefully give me a surgery queue right away as govmt queues here take at least a month giving me more time to prepare/recover/decide.
Troy, can you explain a little more about 'seated rows' in the pool? I'll definitely get some floaties to try.
Regarding the taping sensations, my doc said that it means that nerves are regenerating in the area that triggers, but no way of telling to what extent. I've wondered about this and often tap just to remind myself that I'm far from finished recovering--I guess the true confirmation will be whether or not the taping has affect on someone who has already plateaued.
btw, Chris, was this your movements before surgery?
Cheers
Regarding C8/T1, that is the exact same thing my current doc said that from my hand/wrist movements, he was sure that C8 and T1 were firing something. Well I'm prepared for the worst, that c5 6 and 7 will be avulsed, but hope for the best. Like I said, my biggest worry is that if/when they open me up, I fear I'll wakeup worse off with zero hand/wrist/finger function... risks...
My myelography headaches seem to be gone now, knock on wood, and tomorrow's full day of work will be the test, then come tuesday evening, i'll see what my doc has to say--hopefully give me a surgery queue right away as govmt queues here take at least a month giving me more time to prepare/recover/decide.
Troy, can you explain a little more about 'seated rows' in the pool? I'll definitely get some floaties to try.
Regarding the taping sensations, my doc said that it means that nerves are regenerating in the area that triggers, but no way of telling to what extent. I've wondered about this and often tap just to remind myself that I'm far from finished recovering--I guess the true confirmation will be whether or not the taping has affect on someone who has already plateaued.
btw, Chris, was this your movements before surgery?
Cheers
-
Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: Myelography results: recovery update: please help
Steven,
I had no wrist movement before 7 months and actually had surgery to stabilize it as it made my hand function pretty useless because it was so limp (flail). My middle, ring, and pinky fingers would only open up half way and I eventually had a tendon transfer from one of the wrist flexor tendons to the middle, ring, & pinky extender tendons. They open up in unison now pretty well, enough to shake someones hand, which was my bench mark for amputation, and I made it.
Total recovery time from all nerve transfers and actual full muscle innervation was about 2 years, and I had surgery at 4 months post injury. The longest was a C7 contralateral cross-over to my deltoid. That surgery is where they took half of my healthy uninjured side's C7 and grafted it using a sural nerve harvested from my lower leg/calf area to my deltoid. The reason that took so long was because there was over 18 inches of nerve to regenerate before it reached my deltoid (having broad shoulders didn't help here), so that's about 18 months of waiting, then actually bringing the muscle back to life was another 6 months.
Chris
I had no wrist movement before 7 months and actually had surgery to stabilize it as it made my hand function pretty useless because it was so limp (flail). My middle, ring, and pinky fingers would only open up half way and I eventually had a tendon transfer from one of the wrist flexor tendons to the middle, ring, & pinky extender tendons. They open up in unison now pretty well, enough to shake someones hand, which was my bench mark for amputation, and I made it.
Total recovery time from all nerve transfers and actual full muscle innervation was about 2 years, and I had surgery at 4 months post injury. The longest was a C7 contralateral cross-over to my deltoid. That surgery is where they took half of my healthy uninjured side's C7 and grafted it using a sural nerve harvested from my lower leg/calf area to my deltoid. The reason that took so long was because there was over 18 inches of nerve to regenerate before it reached my deltoid (having broad shoulders didn't help here), so that's about 18 months of waiting, then actually bringing the muscle back to life was another 6 months.
Chris
Re: Myelography results: recovery update: please help
hi chis if you are keen on stem cell research they are condcting stem cell research at the leiden medical center in the netherlands . the web site is ClinicalTrials.gov . The identifier no is NCT00755586
you seem to know your stuff will be good to hear from you about it and my situation
you seem to know your stuff will be good to hear from you about it and my situation
-
Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: Myelography results: recovery update: please help
Troy! Thanks for turning me on to this! I'm going to look into it. You have any other rabbits up your sleeve?
Chris
http://clinicaltrials.gov/ct2/show/NCT0 ... 586&rank=1
http://www.lumc.nl/home
> hi chis if you are keen on stem cell research they
> are condcting stem cell research at the leiden
> medical center in the netherlands . the web site is
> ClinicalTrials.gov . The identifier no is
> NCT00755586
> you seem to know your stuff will be good to hear from
> you about it and my situation
Chris
http://clinicaltrials.gov/ct2/show/NCT0 ... 586&rank=1
http://www.lumc.nl/home
> hi chis if you are keen on stem cell research they
> are condcting stem cell research at the leiden
> medical center in the netherlands . the web site is
> ClinicalTrials.gov . The identifier no is
> NCT00755586
> you seem to know your stuff will be good to hear from
> you about it and my situation
Re: Myelography results: recovery update: please help
mate just put floaty around rist get in water chest deap. i just sit in a spa. then just do the action of rowing a boat making sure to squeze shoulders back. then when you build up a bit use a elastic band for restance
