Can anyone give me a "real life" definition of Myelomelacia?
As always,
Thanks,
Cathy
In Latin, it means bad white matter. It is often diagnosed after spinal cord injury. In such cases and if it is not progressive, it is probably not harmful. However, if is progressive, suggesting that something is damaging the spinal cord, then it may be something to worry about. Causes of progressive myelomalacia are not well understood. Wise.
I also have myelomalacia at about C5 post-discectomy and fusion of c5/6 and 6/7. Currently test positive (negative?) for clonus, hyperreflexia, balance issues. Also have stenosis in the area.
My question is: How, over the next 3-6 months, do we track and/or determine if the myelomalacia is progressive? Repeated MRI's? Neurlogical testing? I just want to ensure that if this is progressive, that my husband and I are deciding on the right course of action to help slow the progression.
Hi,
Repeat MRI would compare a current to any old MRI's to show progression of the extent of the myelomalacia and they are usually done no sooner than 6 months or so apart.
If you are having any change in your neurologic status, such as weakness, loss of function,etc then you would want to let your docctor know, who would be doing comparative neurologic testing.
AAD
The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.
In Latin, it means bad white matter. It is often diagnosed after spinal cord injury. In such cases and if it is not progressive, it is probably not harmful. However, if is progressive, suggesting that something is damaging the spinal cord, then it may be something to worry about. Causes of progressive myelomalacia are not well understood. Wise.
[QUOTE=alan;1560913]You are losing function, and/or losing sensation in areas above your level of injury.[/QUOTE
I had a couple of finger tips go numb but Im only 1 1/2 years into my injury. My function has not changed. My neuro said its part of your injury and didnt make a big deal out of it. If it is progressing what is there to do. I cant really find to many people with the progressive type does it kill ya in a year? Thanks alan
It happens to all nervous system areas that don't have the nerve supply- even in your brain. It is nothing to worry about- or do anything about, that is why your doctor wasn't worried. It should go along with your injury.
No you won't die in a year or every from the myelomalacia from sci.
CWO
The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.
It happens to all nervous system areas that don't have the nerve supply- even in your brain. It is nothing to worry about- or do anything about, that is why your doctor wasn't worried. It should go along with your injury.
No you won't die in a year or every from the myelomalacia from sci.
CWO
Well Thank you SCI Nurse for the time to answer my question. You guys are wonderful !
It happens to all nervous system areas that don't have the nerve supply- even in your brain. It is nothing to worry about- or do anything about, that is why your doctor wasn't worried. It should go along with your injury.
No you won't die in a year or every from the myelomalacia from sci.
CWO
One other question that I dont quite understand. Is loss of sensation above and below injury level something to be concerned about. I have a slight burning on the right side of my face and I have lost some sensation in 2 of my fingers on both hands. Thanks in advance oh I have an injury at c3 area
Last edited by BillyG; 31 Jul 2012, 10:49 AM.
Reason: forgot something
Yes, you should be evaluated for the cause of any loss of either strength or sensation. This could be due to a variety of problems such as a syrinx, spinal nerve root compression, or worsening (ascending) myelomalacia.
The face though is not innervated by the spinal cord, so if you have sensory or motor changes there, evaluation of possible brain lesions or problems should be done.
You need to see a good neurologist for both issues.
(KLD)
The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.
Yes, you should be evaluated for the cause of any loss of either strength or sensation. This could be due to a variety of problems such as a syrinx, spinal nerve root compression, or worsening (ascending) myelomalacia.
The face though is not innervated by the spinal cord, so if you have sensory or motor changes there, evaluation of possible brain lesions or problems should be done.
You need to see a good neurologist for both issues.
(KLD)
I just did from my doc who did the surgery and then I went to Northwestern University Hospital for a second opinion with Dr. Cybulski a very well known surgeon. He said the same thing. I just had an mri a month ago because of these changed symptoms and an emg. If I posted my results of the two would you or Dr. Young take a look at them for me and maybe I would understand a little more. Thank You for helping me
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