VEEG results

[orchids0725]

Well, after 4 days in the hospital, it turns out I have a small blood clot on the right side of the temporal lobe. Doctor showed me the images from the MRI. According to him, this can be taken care of with surgery. Success rate is pretty high and he said with this out, I will be seizure free. My response was "when can we do it?" This is the first time I've ever gotten an answer to what was causing my seizures and I want to get rid of it ASAP. I understand Cint is not very fond of brain surgery. If you don't mind, can you share your experience? I would like to know everyones experience with brain surgery. I think this will help me know what questions to ask the the neurosurgeon. Thanks!

Diana

 

[epileric]

I personally have not had brain surgery but I do know (and this is according to neurologists) that nothing is definite. Many times the "cause" of someones seizures has been removed but the seizures either don't go away or they come back. That was something that was told to me even by the neurologists who tried to talk me into having operations.

I'd be very suspicious just because the doctor is telling you things in such definite terms. It tells me that they really want to do this operation too badly to be objective and have your best interests at heart. One thing I would do is ask to see the statistics and see who published them because nothing is 100%.

 

[Nakamova]

Often brain blood clots are treated with blood thinners (baby aspirin) or steroids. I assume your doc has ruled out those treatments before recommending surgery.

As for the surgery: I think in geenral operations for seizures caused by vascular problems (like blood clots) have a greater post-surgical seizure remission rate than operations for tissue removal (like lobectomies). Still and all, brain surgery always carries the risk of causing... blood clots, which can cause... seizures. There's also a risk of scarring, which can cause...seizures. So as Eric says, it's important to get some sense of the success statistics for the surgery, and for the particular surgeon and hospital involved.

 

[Nakamova]

I assume the blood clot is considered a chronic subdural hematoma (if it were an acute subdural hematoma, or an epidural hematoma, then you'd already be on the operating table.). If that's the case, then surgery is considered the typical treatment, and the surgery itself has a very high survival rate (93% to 97%). (Sorry to put it so bluntly; I figure your doc will give you this info too).

Just our of curiosity: Since chronic subdural hematomas can come from a minor head injury, does your doc think that your initial seizures were caused by a head injury and that the relapse after 15 years was caused by age-related thinning of the blood vessels? Have you had any minor head injuries recently?

 

[orchids0725]

Nakamova,

The doctor said that most likely I was born with the blood clot since I've never had any head injuries. He is the doctor that monitored my VEEG while in the hospital. He came to visit me every morning to update me on what was going on. He works with one of the top neurosurgeons in the country. Unlike my previous two doctors, he did not rule out the hormonal changes I had during pregnancy. He mentioned this was the most likely reason for the relapse after 15 years.

 

[Nakamova]

Your doctor sounds great!

 

[Cint]

Well, after 4 days in the hospital, it turns out I have a small blood clot on the right side of the temporal lobe. Doctor showed me the images from the MRI. According to him, this can be taken care of with surgery. Success rate is pretty high and he said with this out, I will be seizure free. My response was "when can we do it?" This is the first time I've ever gotten an answer to what was causing my seizures and I want to get rid of it ASAP. I understand Cint is not very fond of brain surgery. If you don't mind, can you share your experience? I would like to know everyones experience with brain surgery. I think this will help me know what questions to ask the the neurosurgeon. Thanks!

Diana

Hi Diana,

My situation was much different. I did not have a brain clot. My seizures stemmed in my left temporal lobe and we don't know what/why I started having seizures in the first place. No head injuries, no tumors, clots, meningitis, etc.

I have known several folks who've had brain clot and surgery and came out seizure free. So if I had a blood clot and my chance were good at being seizure-free with brain surgery, then I would more than likely ask for the clot to be removed. But, I also knew several who have had strokes during the surgery. As Nakamova and Eric stated, make sure you ask about the risks,
too.

http://www.nlm.nih.gov/medlineplus/ency/article/003018.htm

Possible risks of brain surgery are:

Surgery on any one area may cause problems with speech, memory, muscle weakness, balance, vision, coordination, and other functions. These problems may last a short while or they may not go away.

Blood clot or bleeding in the brain
Seizures
Stroke
Coma
Infection in the brain, in the wound, or in the skull
Brain swelling

For me, the consequences are memory loss, aphasia, depression.

 

[elizzza811]

If I had a blood clot, would it have shown up on an MRI or MRA?
The nurse treating me for Lyme Disease wants to put me on heparin. My prothrombin fragment 1+2 (monoclonal) was 358 pmol/L and it should be 80-315 pmol/L. And my alpha2antiplasmin was 130% and it should be 75-125%.

I showed my neurologist the results above which indicate that my blood is too thick, but she said usually it's a red flag if either of these values is too low, not too high, so she cautioned me about starting heparin just yet without seeing a hematologist first.