Tagged: Myelopathy Nightmare
JazzmanParticipantMarch 10, 2018 at 7:03 pmPost count: 11
This was a CT myelogram. They injected the dye and tilted the table and then took the pictures in CT. I am getting worse, I can barely walk today,legs are like lead. My bladder is now involved as well as bowels. This is progressing pretty quickly. I think they need to look at my whole spine and not just the neck.
My husband took me to a scheduled appointment with my GI dr on Thursday and she was so alarmed at my condition that she got on the phone to talk to a NS she knows with this hospital network , but he was in surgery. She then called the emergency department to tell them she was sending me right there. She thought this would get me into a neurologist a lot quicker. They did an MRI of my neck. The ER dr told me that I have mild to moderate stenosis at each level. He said they are sending a referral to a neurologist there. He also stated that there might not be anything that can be done to fix this. He said that they compared my MRI from 2015 and I had definitely worsened.
I asked him if he thought this could be coming from compression in the thoracic area and he said it wouldn’t affect my arms if it were. I don’t think that’s correct. Whatever is wrong is steadily getting worse. I am to the point now that I will have to use a walker, even in my home as I’ve almost fallen several times. I don’t know what to think now, I’m so worried that they are going to draw this thing out until I can no longer walk at all.Dr. CorenmanModeratorMarch 11, 2018 at 6:26 amPost count: 5919
It is interesting in that the radiologist wrote the report not indicating this was a CT myelogram.
They are correct in that if the compression was in your thoracic spine, you would not have progressive myelopathy hand symptoms although you probably still have some symptoms in your upper extremities from the past cervical cord compression. Your compression should not worsen if you have a solid fusion as a solid fusion prevents progressive bone spur formation (in most cases). There are other disorders that can increase your symptoms such as hypothyroidism B vitamin deficiency and hypoadrenalism (low adrenal gland output) so make sure all these diagnostic bases are covered.
Dr. CorenmanPLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.If this forum has helped you, please let Dr. Corenman know!JazzmanParticipantMarch 12, 2018 at 12:30 pmPost count: 11
Thank you for your insight. As I’ve said before, I’m sure this is myelopathy and it’s definitely related to movement/ head position. I have seen a definite connection to how I sit with my head propped on pillows with my head crooked back slightly. When I stand from this position the symptoms are extreme, heavy weak legs, difficulty walking, difficulty holding my head up, burning in my feet. These same severe symptoms appear when I’m up on my feet for very long.
I’m waiting to see a neurologist, hopefully it won’t be too long as I don’t think time is my friend with cord compression. Are there paticular tests that can be done for someone showing clinical signs of compression but no obvious signs on an MRI? Tests for someone that has movement/ alignment dependent compression?Dr. CorenmanModeratorMarch 15, 2018 at 8:29 amPost count: 5919
I always worry if the patient has symptoms of myelopathy without imaging studies to support the diagnosis. However, in your case, you have had previous cord compression and surgery which decompressed the cord (at least somewhat). The symptoms would be expected to reduce after surgery but that is not always the case. Your progressive symptoms are worrisome.
Dr. CorenmanPLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.If this forum has helped you, please let Dr. Corenman know!JazzmanParticipantMarch 15, 2018 at 10:58 amPost count: 11
Thank you Dr Corenman, I really appreciate you taking your time to address my concerns. I have an appointment with a neurologist on April 4 which is very fast I know but I don’t know if I can hold out that long.
I’ve never had any bladder issues with past myelopathy episodes( that I was aware of) but something is going on with my bladder now. For the past 5 days or so I’ve had an uncomfortable kind of distended feeling in my lower abdomen. I have a slight pressure feeling all the time unlike a bladder infection ( I’ve had a few in my life) and sometimes when I go I don’t have much of a feeling like I need to but just do because of the weird sensation. It sometimes takes a while to start and I really feel like I’m not completely emptying my bladder. That buzzing feeling in my legs is now felt in my upper legs where I had just noticed it my feet and lower legs until yesterday.
I can’t do very much at all now as it takes an enormous toll on me and I feel fatigued to the point of feeling “ill” when I’m on my feet doing any little task. I’m trying not to be an alarmist, but given my history of waiting until the 11th hour to seek care for any health issue, I don’t know what to do.
I hope the medical professionals really listen to me and get aggressive in finding out why this is happening. Im sure they will go down the MS route but I know this is absolutely not that nor ALS.
My last question to you was; are there any tests that can be done for someone who may have a movement/ positional dependent cervical myelopathy/compression that doesn’t show up on static images? I hate to sound like a broken record but there seems to be a direct correlation between my head position when I’m sitting up or up on my feet and symptom severity. Noise in my ears is kind of loud right now( like a sea shell up to my ears). I’m just not well… Thanks DrDr. CorenmanModeratorMarch 18, 2018 at 5:07 amPost count: 5919
There are no specific tests that can be performed to specifically cement the diagnosis of myelopathy. The diagnosis is made by a combination of history, physical examination and imaging findings. You also might have component of anxiety which always “ramps up” symptoms and makes you hyper-vigilant about your symptoms.
Dr. CorenmanPLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.If this forum has helped you, please let Dr. Corenman know!
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