I just met with my neurologist today about test results, including a brain MRI.
He told me everything is fine, and that my brain looks great. Good news to hear considering I've had Lyme running around in me for about 20 years.
But there were some findings listed on the MRI report I'd like help interpreting:
1. Three tiny nonspecific subcortical white matter lesions in right and left high frontal lobes and left interior frontal lobe adjacent to the insula. Findings are nonspecific
2. 3 mm cyst or prominent perivascular space is evident in the medial right temporal lobe
3. Moderate mucoperiosteal thickening in the right mid and posterior ethmoid sinus
I thought lesions are a Lyme and MS thing. Is it that they aren't important because they are small? Or is there something he should have mentioned to me?
Posted by snowflake (Member # 8950) on :
Hi Aniek
First a question - Is this your first MRI of your brain or were they able to compare to a previous one?
Posted by seibertneurolyme (Member # 6416) on :
It is my opinion that 5 neuros could look at the same MRI and give you 5 different explanations.
The white matter lesions could be caused by Lyme, MS, migraines, and celiac disease -- think there are some others I am forgetting.
Hubby got a very similar response from a neuro who told him he had a beautiful brain. He had 4 or 5 white matter lesions -- had only one I think on MRI's prior to start of Lyme illness.
It is my understanding that a brain SPECT scan could show more info. Hubby has not had one. I read somewhere that if you have a lesion the SPECT will show an even larger area of brain hypoperfusion -- means lack of bloodflow. Could be caused by vasculitis from Lyme as one possibility.
Unless you fit the clinical definition of MS most neuros will simply ignore the lesions. The author Amy Tan had around 20 of them and a neuro tried to convince her that that was normal for her age (I think she was 45 then).
Item 2 on your report I don't know anything about. If it was me I would do a lot more research before I let someone convince me this was normal.
Not 100% positive, but I think Item 3 may mean that you have a sinus infection?
Have you asked your LLMD to interpret the MRI report?
Bea Seibert
Posted by Michelle M (Member # 7200) on :
Hi Aniek.
Typical for a neurologist to find lesions and then tell you "Everything is GREAT!"
I forget the exact number, but perhaps like 20% of neurolyme patients have lesions. (Though lack of lesions does not rule it out.)
The radiologist typically does not try to pin down the cause, which could be anything from lyme, to MS, to vasculitis, to even migraine headaches, which can cause lesions. A certain number are due to aging, but this isn't expected until you are quite a bit older.
The frontal lobes are a preferred location for lyme lesions. True that MS can present there, but it's much more confirmatory of Lyme than MS.
Sinus thickening is a common finding in Lyme. Don't know why.
Doubtless a SPECT would show perfusion problems in your brain. So unlike your neuro's happy prognosis, there is definitely a sign of a problem.
Studies have shown lesions lessen or disappear about 50% of the time. Mine have not changed in a year of treatment.
I would discuss them with my LLMD and take my neuro's advice with a grain of salt. He's not apt to think anything short of a brain tumor is important!
Keep treating with good blood-brain barrier crossers!
Michelle
Posted by Aniek (Member # 5374) on :
Even if the lesions are from Lyme, what does it mean? Just a fact of Lymie life or do I need to treat the Lyme differently?
My LLMD will look at the results, but not for a few weeks. This was my first brain MRI.
The main reason to see the neuro was to rule out other causes of my tics and other movement problems. He's not saying I'm not sick, he's saying Lyme is causing it.
Posted by seibertneurolyme (Member # 6416) on :
Aniek,
To me what it means is that you need to use antibiotics that penetrate the blood-brain barrier -- either oral or IV.
Here is a brief description from a neuro that explains white matter lesions in simple English.
for me, the perivascular spaces were not evident on previous MRIs though and this concerns me. I really dont know much about them though and the info available online is too confusing for my brain to interpret.
I only just got my report from the radiologist today, my neurologist hasnt even reviewed it yet. I will let you know what he says.
I did find this which sounds a little scary:
"Enlarged perivascular spaces are extensions of the pia mater accompanying perforating arteries and containing interstitial fluid. These spaces can also invade the peri- and supraventricular white matter and occasionally mimic cystic tumors, infectious disease, mucopolysaccharidosis and multiple sclerosis.
Prominent perivascular spaces (PVSs) may cause focal neurological symptoms and can lead to extended space occupying effects with a consecutive three-ventricular hydrocephalus. In these symptomatic cases neurosurgical intervention is required."
Maybe it's important WHERE these PVSs are located ?? I have no idea. Hopefully the above doesnt apply to us. Although, at this point, if neurosurgical intervention could help my neuro symptoms, i'd probably be all for it.
I also read that these PVSs are commonly seen in different forms of demyelination, like in MS, etc...so I'm guessing Lyme too ?
[ 06. July 2006, 11:00 PM: Message edited by: SunRa ]
Posted by Aniek (Member # 5374) on :
Are other people with Lyme finind "tiny" lesions? Just trying to understand if that's better or if they are always tiny.
Posted by david1097 (Member # 3662) on :
Hi. Basically the mri results are good news. There is no significant visible damage from lyme or otherwise. Some lyme lessions can be very large.
Lets go through the results you listed
-------
He told me everything is fine, and that my brain looks great. Good news to hear considering I've had Lyme running around in me for about 20 years.
The report is in agreement with this statement. In particular what is seen is not outside of the anomilies normally seen in the population and is non specific as a result. ---------
But there were some findings listed on the MRI report I'd like help interpreting:
1. Three tiny nonspecific subcortical white matter lesions in right and left high frontal lobes and left interior frontal lobe adjacent to the insula. Findings are nonspecific
These are small spots that he has seen on the MRI. There are many possible cuaes, including causes that are not under stood. In controlled studies, the appearnce of such lesions correlates with age. the older the patient is the more likey these spots are to occur. They can be caused by infection, inflamation, injury or are just appear for no known reason. Since there are so many different possible causes and since a lot of people have them their appearance neither confirms nor refutes any diagnosis, thus the label normal.(for better or worse).
----------------------------------------------
2. 3 mm cyst or prominent perivascular space is evident in the medial right temporal lobe
This is an odd one, I would ask my Dr to follow up on this in a few months. There are a number of possible causes of these types of cysts, again including benign causes. 3mm is very small and it is suprizing that it was even identified. Still it might be the start of something or then again maybe not. ------------- 3. Moderate mucoperiosteal thickening in the right mid and posterior ethmoid sinus
This is a sign of some type of sinus infection/inflamation. It shows up because te MRI was of the entore head. This area is sometimes importnat as an infective agent can evetually erode the bone above the sinus and epentrat eth brain to creat a brain absess. It is astounding to relaize that some Dr's even miss such a gross infection.. And people complain that getting a lyme diagnsis is hard... I met a fellow that had seen 7 doctors complainng about sever an unrelnting headaches, only to find in the end that he had a brain abcess that had originated through the sinus area. Needless to say they did surgery on this poor fellow that day.... Same story with another poor fellow, this time it was a botched root canal that was the cause.
------------- "I thought lesions are a Lyme and MS thing. Is it that they aren't important because they are small? Or is there something he should have mentioned to me"
As I noted above, the observed lesion and cyst findings also appear in "normal" people, so it does not sound like he forgot to mention anything. MS lessions are usually pretty big, however the report did not mention ths size. Also, MS has specific charactertiics in terms of how they appear (which MRI sequence) and to a limited extent, where they occur.
A far more useful tool for Lyme is a SPECT profusion study. The MRI basically just rules out more ACUTELY serious disease. Your Dr does not want to treat the wrong disease.
I think what is more important is what is NOT said in the MRI report. If there were large lesions, intensifying lesions, mass effect, abnormally large atrophy etc.(and the list goes on) then I would really start to worry. Some of the images that show up with people that just walk in with some symptoms can be pretty gross (things like dead worms ....) so not to worry. Just stick with the LLMD's program.
Hope that helps.
Posted by LostCityAgent (Member # 9050) on :
That Jack *** .
Of course you should know about that. It could totally be from LD or other etiologies.
Huh!
Posted by Aniek (Member # 5374) on :
Thank you all for taking the time to go through this with me.
The reason for the tests was, as David mentioned, to rule out non-Lyme causes of my motor tic disorder. The neuro is not an LLMD and not trying to treat my Lyme.
He is actually one of the most personable doctors I have ever worked with. He never doubted that I have Lyme. He even took the time to research the connection between motor tics and Lyme between my visits.
![[Frown]](frown.gif)