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Vascular lesion surgery?
Fri, 12/21/2007 - 01:07We just learned this afternoon that DH's last 5 years of "episodes" were autonomic (simple partial) seizures, and that they are being caused by a vascular malformation known as a cavernous hemangioma, or cavernoma. He continues to have the seizures on a fairly regular basis -- 15 so far for the month of December.
The MRI he had last week shows that this little glob of capillaries (cavernoma), which bleeds on and off, has more than tripled in size in the past three years. His current neurologist feels pretty strongly that it should come out. In the mean time, he's supposed to start Lamictal to address the seizure symptoms, and we're going to schedule a neurosurgical consult.
Anyone else out there with experience in this particular scenario?
I'm considering taking DH to UCLA for a secondary surgical opinion, since it's the highest-ranked neurosurgery hospital in our area.
Looking forward to feedback!
Comments
Thanks for sharing your experience.
Submitted by gcvmom on Sun, 2008-01-06 - 21:30
I appreciate your share of your experience. What you said pretty much echoes what the neurologist said to us as far as the seizures being more likely to get worse over time.
So far, he hasn't had any seizures since December 15th, but he's gone weeks without them in the past and he's still early in his dosing schedule for the Lamictal, so time will tell. IMO, he would need to be seizure-free for more than six months before I would consider the Lamictal a success.
Then again, he'll likely have surgery before then :)
He's scheduled to see a neurosurgeon at UCLA (Dr. Martin) on the 14th. We're also going to check out USC, and will likely keep the appointment at the teaching hospital where this was diagnosed, just to make sure we've thoroughly explored the situation.
Thanks again!
I appreciate your share of your experience. What you said pretty much echoes what the neurologist said to us as far as the seizures being more likely to get worse over time.
So far, he hasn't had any seizures since December 15th, but he's gone weeks without them in the past and he's still early in his dosing schedule for the Lamictal, so time will tell. IMO, he would need to be seizure-free for more than six months before I would consider the Lamictal a success.
Then again, he'll likely have surgery before then :)
He's scheduled to see a neurosurgeon at UCLA (Dr. Martin) on the 14th. We're also going to check out USC, and will likely keep the appointment at the teaching hospital where this was diagnosed, just to make sure we've thoroughly explored the situation.
Thanks again!
I had surgery done
Submitted by EarthMonkey on Sun, 2008-01-06 - 16:32
I had surgery done several years ago to remove a gangliaglioma tumor which is different than what your husband has. However, in the three months prior to surgery it grew for the first time in years, the growth made my seizure numbers and severity rise, it made those three months a fuzz as far as memory goes, it caused my right side to have nerves go to sleep (the tumor was on the left), it caused my ability to lift things and walk to be effected negatively. Your husband is having slower growth but any growth of a lesion in the brain is going to have negative effects on the person. If it is growing slowly the effects arrive slower if it is growing faster the effects arrive faster and more severely. A lesion that is growing or not growing also will most likely cause your husbands seizures to get worse. My seizures over the years went from one every several months, to daily seizures, to daily seizures and cluster seizures monthly, to daily complex partial seizures and cluster seizures and status epilepticus every week in the time close to surgery.
I had surgery done several years ago to remove a gangliaglioma tumor which is different than what your husband has. However, in the three months prior to surgery it grew for the first time in years, the growth made my seizure numbers and severity rise, it made those three months a fuzz as far as memory goes, it caused my right side to have nerves go to sleep (the tumor was on the left), it caused my ability to lift things and walk to be effected negatively. Your husband is having slower growth but any growth of a lesion in the brain is going to have negative effects on the person. If it is growing slowly the effects arrive slower if it is growing faster the effects arrive faster and more severely. A lesion that is growing or not growing also will most likely cause your husbands seizures to get worse. My seizures over the years went from one every several months, to daily seizures, to daily seizures and cluster seizures monthly, to daily complex partial seizures and cluster seizures and status epilepticus every week in the time close to surgery.