Dva's (Venous Malformations) And Ccsvi Testing?

[Angela]

just found out via requesting actual records and imaging that I have a DVA (developmental venous anomaly) in deep left front temperol lobe. (funny, i had an eeg that showed brain slowing in DEEP LEFT TEMPORAL LOBE so was put on siezure meds for awhile but my neuro at the time didn't mention the DVA found in my mri, I guess it was "unremarkable" and unrelated...... in his eyes?).

Basically a DVA is a cluster of dilated veins that take an "unusual" course. Sometimes called venous malformations or venous angiomas. From the reading I have done in the last 2 days, this condition can cause epilepsy (due to the malformation pressing on brain causeing exessive electrical activity), headaches, visual problems such as blurred vision, double vision, and loss of vision particulary affecting one eye, ringing or whooshing sounds in the head,memory problems, anxiety and depression, speech problems, and weakness in arm/leg, balance problems. I couldn't find anywhere on the net where it associated it with tachycardia although I found some mention of hypertension. I imagine if my brain is not circulating blood properly or if it is getting stuck up there this could cause tachy and bp issues as my body tries to compensate for irregular blood flow in the brain, which is supposed to control everything else. I'm not like some of the pots people who have blood pooling in my feet and legs, my intuition has always been that it is in my head or kneck area.

Has anyone had a cat scan, MRA or MRI that specifically looks at the veins in head/kneck? CCSVI and DVA's are both vascular issues so seemingly has strong corelation to POTS.

[sue1234]

I have had about 3 MRIs, and none mentioned any circulatory abnormalities. I had one MRI that included the neck, but I don't recall them mentioning anything about vessels in the neck, just the bony issues and the spinal cord.

Sure hope you can find someone to delve into that issue with you!

[Angela]

Were your mri's with and without contrast and did they shoot you with the dye? My 1st mri they were looking for ms and did it without contrast so I wonder if that was why nothing was noted. The 2nd mri was with and without contrast...no one mentioned anything to me until I requested the actual mri's on disk and I found it mentioned in the radiologists notes (from the 2nd mri)

[sue1234]

Yes, I did have the contrast. Even though my head MRIs look normal, my head has never felt normal. I always feel like I have head and eye pressure, and I have constant ringing in both ears, just one is way worse. Alot of times my vision is pulsating even though my arm blood pressure is normal. *sigh*......if only I had something at home to test my head pressure during these times.

[Angela]

Have you ever had your kneck checked out? I read that the main locations of dva's are the head and neck (40% of cases), extremities (40%), and trunk (20%). Venous malformations typically expand after the Valsalva maneuver and may be flattened with applied pressure. They tend to grow over time in proportion to the growth of the patient. They often enlarge during puberty and pregnancy (due to hormonal influence) and do not regress. Symptoms are related to size and location. Deep cutaneous or intramuscular lesions usually cause discomfort, often in the early morning on awakening or with exertion. Intraoral venous malformations can bleed, distort dentition, cause speech problems, and obstruct the upper airway and pharynx. Thrombosis, swelling, and pain are common in venous malformations.

[sue1234]

I did find out I have cervical stenosis. And, since you mention worse symptoms in the morning, I have the blurriest vision when I get up, and it takes a few hours to get to my "normal". I literally have to wear a pair of rx glasses during that time just to read the words on the tv. Later, I can do without the glasses.

[jbenz1772]

Angela,

Have you spoken with an interventional neuroradiologist? There is a procedure called sclerotherapy where they inject a sclerosing agent and the internal surfaces of the malformation burn and scar down, inhibiting the pooling of the blood. I'm assuming the malformation is intracranial? Not sure where you are located, but Froedert Hospital in Milwaukee, Dr Zadat is excellent or would be able to refer you to someone in your area.

Good Luck,

Jennifer

POTS

Small Fiber Autonomic Neuropathy

[Angela]

I've never heard of that. All research shows they leave DVA's alone unless they can see the ccm. My neuro is having me do a mrv, wouldn't that show more details? He doesn't think a DVA is related to POTS but I was doing a bunch of reading about symptomatic DVA's and also correlation to epilepsy. I live in Phoenix. IDK. How did you know about sclerotherapy?

[Angela]

jbenz, yes, sorry intercranial....deep left front temperal lobe.

sue1234, sorry, didn't see that you said you had mri of kneck. Have you ever had 24 hr eeg? That's when they found out about my left temperol lobe brain slowing and since I was also on a heart monitor they saw resting heart rate 70 but in day time up to 150.