Pseudotumor cerebri connection to Embolism?

[Laura1116]

Hello - My daughter at age 14 was diagnosed with Pseudotumor Cerebri brought on by an allergic reaction to monocycline.  She was treated by a pediatric neurosurgeon and all symptons went away.  4 years later she had a sudden attack leading to her death of a Brainstem Cerebral Embolism.  She had no underlying disease (including obesity).  Was not drugs (tested as she was an organ donor).  Should the diagnoses at age 14 have been followed up as causing additional damage to arteries?  As parents we were not informed to continue monitoring as there is no family history.  Just need to know for closure and for other parents.  -ld

[Talloola]

I am so sorry for the loss of your daughter!

I was diagnosed with pseudo tumor at the age of 13. The diagnosis came after I went through a month of pain and vomiting and finally going blind. The first doctor that I went to sent me home with tetracycline and suggested that I lose weight. The loss of my eyesight finally got some attention. They treated me with diuretics and lumbar punctures, at that time they were spinal taps done in the doctor's office, YUK! My eyesight came back which astonished all of the doctors due to the damage to my optic nerves. I did not experience and further problems until I was 23. At that time I lost my eye sight again. I was untreated because I was under the impression that the pseudo tumor was gone. I was not aware that it would come back with stress and weight.

I am now 32 and am fighting this disease again but have been undergoing treatment for the past 10 years. I went to see the neurosurgeon this week, and here is where I get to what I really wanted to say to you, and he was very knowledgeable. He explained pseudotumor in detail and has written numerous studies on the disease. He discussed how this disease has an impact on the heart. I am going to type a quote from one of his studies. I don’t know if this will answer your questions but I hope that it helps.

"Patients with idiopathic PTC (without outflow obstruction) had elevated central systemic venous pressure (right atrial pressures), which may be transmitted up through the jugular veins and paravertebral plexus in the sinuses."

Hypertension can increase the chances of heart failure, strokes, MI’s, renal failure, and aneurysms. While PTC is not hypertension my understanding is that its impact can be very similar to hypertension. Like I said, I hope that this helps a little.

The article that I have quoted from is “Elevated intracranial venous pressure as a universal mechanism in pseudotumor cerebri of varying etiologies”  the authors are Dawn G. KIarashalios, Harold Rekate, Masen Khayata, and Paul J. Apostolidos.

[selmaS]

My Deepest Sympathies at the loss of ur daughter.

I do not know a lot about PTC, except it is mainly found in those that r overweight, but it is  not a determining factor.Those with chiari malformation can have it in conjunction or, develope it after surgery to slow the progression.

As to the embolism  I am not up on if the PTC triggered it or the other way round.

U may want to ask these questions of a specialist in the field of Chiari as they deal with these conditions as a focus of their practice and may have the answers u seek.

Again, I am so sorry u had to endure this loss.

"selma"