August 14, 2012 at 8:00 pm #2752
I finally had to just go to the Doc office and ask for a print out of her results of her MRI/MRA. I could not get the PA to return my calls in regards to the results. I’m a bit upset because they do have negative findings on it that seem pretty important to know. Since I love the doctor and this isn’t her field I will over look the annoying PA and just find whoever we need to assist if the results need follow up. If anyone here might understand this findings and which type of Doctor we should see for an opinion I’d love to hear your thoughts. I assume a neurologist is who, but don’t know that for certain. These were done in a traditional laying down MRI and she is 13 (if that is important) (and not to worry. I am not one to panic and get worked up so please feel free to be totally honest etc. I know people on the Internet can’t diagnosis but can be very helpful in just understanding things better, so speak freely)
Finding: There is no evidence for restricted diffusion. Tiny foci of abnormal T2/FLAIR signal involve the subcortical white matter predominantly involving frontal lobes bilaterally. There is relative sparing of the posterior fossa and brainstem. There is no evidence for chari 1 or chari 2. Gradient echo signal is unremarkable. Postcontrasted sequences are unremarkabl. There is no evidence of tonsiliar herniation.
Following are normal: visualized mastoid air cells, sinuses. Orbits. Arterial flow voids. Bone marrow signal.
1. No evidence for acute inter cranial pathology.
2. Foci of abnormal T2/FLAIR signal within the pervientricular white matter of frontal lobes predominantly. These are nonspecific in nature. Differential considerations would include sequelae of migraine headaches, remote trauma, vasculitis, or early micro vascular disease changes. Multiple sclerosis shou,d also be considered in the appropriate clinical setting.
3. No evidence for abnormal enhancement.
If anyone grasps these findings it would be greatly appreciated. I know we will need to see a doctor for if this is of concern etc but I’ve learned understanding things before seeing the doctor can be very helpful in having a productive understandable appointment. Worse is leaving more confused than before going.
Thanks for taking the time to read and respond and thanks again for the previous posts. 😀August 15, 2012 at 5:50 pm #2753BarbaraParticipant
These results look similar to my grandson’s, with regard to the foci of abnormal signal. He also has slightly enlarged ventricles, which I believe is mentioned in the Driscoll Theory. The report has made some suggestions as to cause, it would be up to the Neurologist to narrow it down, looking at history and clinical signs.
These are the questions that I would additionally ask:-
1) Is there ANY degree of low-lying cerebellar tonsils (no matter how slight)?
2) is there ANY flattening of the pituitary gland (which should look like a cherry, not a pancake!)?
3) Is there ANY level of excess fluid interstitially in the brain?
4) Is there an excess of CSF fluid in the subarachnoid space above the brain?
5) Could there be mildly enlarged ventricals?
6) Could there be mild cistern engorgement with CSF?
7) Could the Corpus collosum be slightly flattened?
8) Whether your daughter has a retro-flex odontoid (the top of the peg-like bone bends backwards)?
9) Whether there’s a pannus alongside her odontoid ?
10) Could either of her Transverse SInuses be stenosed?
(UK)August 15, 2012 at 9:37 pm #2756
Thanks Barbara. I truly appreciate all the time you take here answering questions.
The PA finally picked up the phone and returned my call. So wish I could fire the PA but keep the Doctor. 😉 The Cardiologist has been trying to consult with a Neurologist in regards to the kiddos medical conditions and the results of the MRI. She couldn’t reach him before leaving town, but will be back midweek next week, so hopefully we can understand more and be scheduled for a visit.
The Geneticist narrowed down to HEDS or VEDS originally and figured she would watch for a while to see if becomes more obvious. We could do the VEDS test, but the cost along with the enormous medical bills we already have and continues to be added to we would put it off a but. I wonder what her thoughts would be on the results. Plan to have them sent over, but do wonder if she would feel more strongly about VEDS with these findings.September 6, 2012 at 12:00 pm #2880
Well it took several weeks for the Neuro consult that amounted to nothing. She felt it was likely a migraine disorder, but has no experience with the kiddos conditions nor has much of her history. The kiddo hasnt ever had a migraine and it would seem if the lesions and such in her brain were due to migraines she would have had the migraines first or with. But obviously I do not know. So after a month of waiting they have referred her to a Ped Neuro. Could have just said that all along. From research my guess is it’s to do with EDS or suggesting different connective tissue disorders or a new thing related to EDS. VEDS was never ruled out (and left on the table by the Geneticist) and so I’m thinking we need to do that given there appears to be vessel involvement in her brain.
I am curious if anyone knows if the “relative sparring of brainstem and posterior focca” is another way to say scarring or lesions? I also haven’t clue how to find a Nuerologist with experience in EDS, POTS ETC… Ideally I’d like to take her and her history us to Seattle for Dr Byers opinion. Don’t believe that is possible with her insurance.
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