My MRI images

sb4

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I have made an undoubtedly terrible attempt at doing some of my own measurements.

@Hip @valentinelynx @jeff_w @JenB

From my extremely amateur view it looks like the most potentially significant thing is disk herneation / bulging at C5/6 and a little at C4/5. It looks similar to the CFS study where the three patients had disk surgery and got better. The width of the CSF at that location is less than 10mm on a scan that shows the biggest effect, if I have measured it right. Other than that it looks mostly normal with some border line.

The top of the brainstem seems to turn at a bit of a sharp angle and this is backed up by borderline CXA.

One thing I have noticed is that looking at other peoples MRIs who have Dx they seem to have areas where the CSF seems super thin thanks to herneiation etc but with me I seem to have quite a lot of white CFS around the core the majority of the time.

Although there are parts where the spinal cord seems to be bent a bit awkwardly it is never pinched.

Any thoughts from anyone? Are my measurements bad? Is any of this potentially significant? Thanks. I should get a report back over the next few days.

And just for fun, since it is Halloween next month check this out:

scary.jpg
If I was going out for Halloween I would go as my MRI.
 

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jeff_w

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Hi @sb4

From my extremely amateur view it looks like the most potentially significant thing is disk herneation / bulging at C5/6 and a little at C4/5. It looks similar to the CFS study where the three patients had disk surgery and got better.
Yes.

The top of the brainstem seems to turn at a bit of a sharp angle and this is backed up by borderline CXA.
Yes. You have a retroflexed odontoid, as I did prior to my fusion.

One thing I have noticed is that looking at other peoples MRIs who have Dx they seem to have areas where the CSF seems super thin thanks to herneiation etc but with me I seem to have quite a lot of white CFS around the core the majority of the time.
That abundance of CSF can be associated with intracranial hypertension.
 

sb4

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@sb4
Do you suffer from neck pain?

is it a retroflex odontoid, or is it a thickened ligament?
I don't suffer from much neck pain. My neck gets a bit achey during the evening and this usually coincides with me feeling better. So it could be just from being up right all day but I think something else is at play.

I don't get headaches, PEM, nor gait disturbances, burning nor tingling. I do get a bunch of heart symptoms and autonomic symptoms. If you look at the sympathetic nerves that lead to the heart, two of them exit at C5 C6. Wonder if bulging disk could be impeding the nerve leading to poor sympathetic control of the heart and thus autonomic dysfunction?

I'd lean towards thickened ligament as on some of the images you can see that it doesn't seem to be jutting out much, but IDK. 5.png
 

sb4

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@sb4 , autonomic function is probably at play, you need to test it.
How do you react to the finger wrinckling test?
Not done it yet. However I think its possible that I could be the opposite way around as I noticed sometimes my fingers would get wrinkly for no reason and touching things would be wierd. This only happened when I was more ill. I know my fingers do get wrinkly after whilst in the bath however it would be a case of seeing how long it takes I suppose.

Am I right in saying water is around 40*C and after 15mins fingers should be wrinkly?
 
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@sb4

Based on the MRI it seems like there is nothing serious going on like basilar invagination or severe cord compression.

However, it seems to me that your upper spinal cord / brain stem might be curved a bit too much. When you have excessive curvature in that area it could lead to pathological stretching of the nervous tissues.

It seems that in flexion and extension the curvature around the brainstem is reduced. You could do a simple test:

Keep your head bent forwards or backwards like in the MRI for a number of minutes. Do your symptoms improve or get worse? If something changes, it could be an indication of a problem.

It should be pretty safe to do, just make sure you dont do it for too long, maybe start with 2 - 3 minutes and go from there gradually.
 
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One thing I have noticed is that looking at other peoples MRIs who have Dx they seem to have areas where the CSF seems super thin thanks to herneiation etc but with me I seem to have quite a lot of white CFS around the core the majority of the time.

Although there are parts where the spinal cord seems to be bent a bit awkwardly it is never pinched.
Yes @sb4 you have mild cervical spinal stenosis from degenerative disc disease. As I've mentioned before and as any spine or pain doc would say, the MRI findings need to be correlated with symptoms. This gets fuzzy when we're talking about ME/CFS symptoms, but, although I could be wrong, I doubt that mild stenosis like this would cause significant systemic symptoms. The "traditional" symptoms of cervical stenosis are neck pain, headaches, arm weakness, numbness and pain, and in severe cases, balance and walking difficulties and bowel or bladder control issues. As you point out, the discs are not impinging on the cord to the extent of blocking CSF flow and they are not indenting the cord or causing signs of inflammation in the cord ("signal changes"). But if you do have symptoms that seem related to your cervical spine, a "regular" neurosurgeon (not one with CCI experience) or a spine pain specialist (most pain docs) could help you with a treatment plan (PT, epidural or nerve root injections, and/or possible surgery to relieve the compression).

I would not pretend to be an expert on the CCI measurements. Dr. Bolognese in one of his lectures admonishes the community for doing armchair diagnoses on each other's MRIs, saying it sounds simple but isn't. Whether he was just trying to prevent people from running away with diagnosing each other or if he is speaking the plain truth, I don't know. However, I'd agree that your MRIs don't seem to show much in the way of significant measurements for CCI. The others you tagged, especially @JenB and @jeff_w are more likely to have useful input in this area.

I hope this is helpful. Best of luck!
 

sb4

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@borko2100 I don't feel my symptoms change in flexion and extension, although it is uncomfortable to hold that position with some neck pain.

Interestingly when my neck is in extension, the spinal canal diameter is at 8mm at both disk bulges. In normal position it is 10mm on the worst image. Apparently bellow 10mm is patholgical. Here are normal measurements.


I wonder though if I am measuring correctly. It is my understanding that MRI images are like slices going through in layers. So in the layer where disc bulge is most obvious, I have 10mm canal diameter which is pathological. However in the other layers it is above 10mm. Since the spinal canal is 3D then obviously a decent amount of CSF can flow around. So I wonder if the canal diameter measurements take account of this or not.

Also anyone have any idea on the rates of cervical disk degeneration in relatively young people? I am 28 and would like to know how likely I would have mild disk bulge by chance at my age. I found a study suggesting I think 25% of people below 50 have stenosis which seems pretty high and you would imagine the vast majority of these cases it causes no problems.
 

sb4

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@valentinelynx Yeah that's the thing, I don't really have any of the symptoms associated with stenosis as you point out "neck pain, headaches, arm weakness, numbness and pain, and in severe cases, balance and walking difficulties and bowel or bladder control issues ", only mild neck ache which I assume many normal people have. On top of that I experience nothing with regards to traction.

I understand the caution of armchair neurosurgeons, however I think it is useful to get a rough idea of what it could or could not be, baring in mind that no one is a doctor.

You have any idea whether the mild stenosis / bulging could be impacting the sympathetic nervous that lead to the heart as you see this is the level they occur at.

 
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I don't think your problem is stenosis. Look at the image below. As long as the spinal cord itself is not getting deformed it is not considered serious.

On second inspection, it seems like your problem is kind of borderline. It seems like grade 1.5. If this causes pathology I dont know.

 
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Also anyone have any idea on the rates of cervical disk degeneration in relatively young people? I am 28 and would like to know how likely I would have mild disk bulge by chance at my age. I found a study suggesting I think 25% of people below 50 have stenosis which seems pretty high and you would imagine the vast majority of these cases it causes no problems.
I think spinal stenosis is 90% in older people, so yes it is very common. As @valentinelynx said, the symptoms are decisive. The problem is that some symptoms are not taken into account by neurologists like dizziness, tinnitus, brain fog, autonomic symptoms, etc...So symptomatic people may be more than it is currently admitted.
 
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Not done it yet. However I think its possible that I could be the opposite way around as I noticed sometimes my fingers would get wrinkly for no reason and touching things would be wierd. This only happened when I was more ill. I know my fingers do get wrinkly after whilst in the bath however it would be a case of seeing how long it takes I suppose.

Am I right in saying water is around 40*C and after 15mins fingers should be wrinkly?
yes it is the more simple test we can find for autonomic system.
Did you had tilt table test? Do you have change in your heart rate and blood pressure when standing?

I don't think the hernia itself could directly have an effect on a sympathetic nerve going to the heart, sympathetic nerves arise from the spine from T2 to L2.

However, a chinese study (2019) conclude that cervical decompression may improve autonomic heart regulation, I posted it here

https://forums.phoenixrising.me/thr...with-cervical-spondylosis.77329/#post-2224587

1568199030587.png
 
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You have any idea whether the mild stenosis / bulging could be impacting the sympathetic nervous that lead to the heart as you see this is the level they occur at.
Your degree of stenosis appears fairly mild on MRI so I doubt it is causing autonomic dysfunction. However, it's not impossible as testified to by this case study of an older man whose AD was cured with a cervical discectomy and fusion ("Autonomic dysreflexia caused by cervical stenosis"). This was apparently the first case of this reported in the literature. His degree stenosis looked more severe than yours and he had symptoms of cervical stenosis and radiculopathy.
 

sb4

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To answer my own question. It seems that even grade 0 and 1 could be symptomatic
Not sure I understand this. Grade 0 is no disk bulging, right?

Did you had tilt table test? Do you have change in your heart rate and blood pressure when standing?
Yes I had the tilt table test and my heart rate went above 120 and increased by over 30 within 10 minutes. This was when I was near bed bound. Now I can stand for quite a long time, maybe an hour on a good day without much increase in symptoms. I can walk moderate distances. So I am not even sure I would qualify for POTS anymore with those metrics however my body is still significantly messed up.

I wonder if heart throb means heart pounding hard in chest?