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Vascular lesion surgery?

We 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

I  had surgery done

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.  

 

 

Thanks for sharing your experience.

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!

Yep, i've got one!

I have a Cavernous Hemanioma and have been on drug therapy for 14 months now. Although my seizures have lessened, I am still having breakthroughs despite being on a combination therapy. I am ready to talk about surgery. It has been my experience that the
Nuero. strongly suggested drugs and advised that surgery was a "last resort".

The side effects I have been experiencing I.e.: depression, weight loss, memory issues, are not conducive to a stable life, nor is the fact that I am still having bi-monthly breakthrough partial-complex seizures. I am now poised to have an increase in one drug, try to wean off of another, and "see how that goes".
I am starting to get pissed off.
I have made an appointment with my Neuro. this month to talk about my surgery options. How did you get in touch with Neurosurgeons that took your case seriously? I live in Texas.
Thanks! a

Hi AllyR

Thanks so much for your reply.  We're in Southern California.  I've not heard very good things about the healthcare in your state, I'm sorry to say.  I just got an email from a cousin in your state who's having issues getting some mystery medical problem solved -- no one seems to know what's wrong or what to do.  Frustrating!

I researched two of the surgeons we'll be consulting by going looking at US News & World Report's 2007 Best Hospitals list and finding the top neurosurgery sites in our area, which happen to be UCLA and USC.  The third surgeon is the one our local neuro wanted us to see, and who is also at the same teaching hospital he's at (which doesn't necessarily mean he's the best one for the job).  I also got word-of-mouth confirmation from the folks at AngiomaAlliance.org about who in my area was reputed to be good. 

We don't know for sure if the surgeon(s) will agree with the neurologist's view that this should come out.  The neuro's reasoning is that DH has been symptomatic with seizures for 5 years and that the cavernoma has more than tripled in size since '04.  He told us it's in an easy-to-reach location, and that if left alone, he risks permanent short-term memory loss.  He's the only one we've talked to so far, and we'll certainly know more after Monday when we go to UCLA for the first of three different surgical consults we have scheduled.  He also has a DVA associated with this thing, so that's another reason we're hitting the top teaching hospitals in our area.  Don't want someone who's inexperienced digging around in there!

DH is on Lamictal, and it's been actually quite good for him because I suspect he also has an underlying mood disorder.  We have a child with early-onset bipolar and he's a LOT like his dad ;-)  In many regards, this cavernoma may turn out to be a blessing in disguise if it causes other issues in DH's life to get addressed, even if it's from the back door!

Where is your cavernoma located?  Has it been imaged recently and if so, has it changed much?  How long have you known about it?

Do you think the side-effects you're experiencing are related to meds or to the location of your cavernoma and its effect on your brain function? 

Thanks again for your reply!

Whew! You Answered!

My health sitch has been a long and tedious one. I first started experiencing my "panic attack" like symptoms at the age of 26 (I am now 31). When they became troublesome enough to seek real help, I brought it up with my mother, who is a CRNA and thinks she knows all about every health issue. She was sure I had a heart arrthymia due to the fact that my heart rate would increase during my "spells". Just before my scheduled arrthymia surgery, I had a partial seizure in a docs office, and he said, "I think she may have had a seizure". My mother told me later, "well, I just marched you right out of there". Needless to say how I felt and still feel about that. I had the cardiac ablation, and did not have symptoms for 1yr. My symptoms then returned. My Neuro. says that the anesthesia used in the surgery could've quieted my seizure. Still don't know if I actually had an arrthymia or not, but they did do surgery. I do know that my symptoms then and seizures now are identical.
I moved out of my home state, away from the "advice" of mom (rather reactionary, I know) , and started a new job in Texas, where I could try to get help on my own. Went in for 2nd arrthymia thinking I still had heart prob, Docs said there was nothing wrong with my heart. So I went along thinking I was just crazy. I experienced random loss of balance, "spells", etc. Finally had a grand mal and had MRI that showed Cavernous Hemang. in Temporal Lobe (not sure which side). I am now on Topamax, Keppra, and Gabapentin.
My seizures are (somewhat) resistant to the drugs, and while I am sure that the dosage could go up, I am in a sitch where insurance-wise, if I am a candidate for surgery, I need to be pursuing it now. My last MRI (last year) said my lesion was the size of a pencil eraser.
As far as the side effects, I've had struggles emotionally (as you can see from my rant here), but I still get up and go. I have found the financial burden of these med costs to be high, and Topamax (which is what is working for me) has made me as skinny as a rail. I'm 5'8' & 110 lbs. Great, if you like herion addicts. I do feel that these side effects are from the meds.
Insurance has been a real hurdle for me, and I am not sure that I can go to surgeons out of state. I know Angioma Alliance.org so I shall check back to that for advice.
Thanks for reading my rant and rave!
AllyR

Hope you get some answers soon...

I think I'd still be pushing for a better handle on my symptoms from the meds, whether surgery is sooner or later.  There's absolutely no point in being miserable -- and temporal lobe problems often mess with your emotions (my husband is certainly proof of that).  There must be some resources in your state for helping with the cost of meds...  if I come up with anything I'll post back about it.

As unhappy as you are with the weight loss, I think I'd prefer that problem over the other end of the scale (pun intended).  You can always try supplementing with something like Boost or Ensure to sneak some extra calories in your day.  I have a son with a chronic GI disorder and keeping enough weight on is a constant issue, so I can relate to the frustrations that come with that.  Sadly, I have the OPPOSITE problem...

It's unfortunate you underwent what seems like a completely unnecessary surgery in the course of figuring out what was really going on with you.  I'd be pretty upset if it were me -- but I guess not much you can do about it now but move forward.

Another thought I just had about finding a good surgeon in your area, might be to contact either Dr. Neil Martin at UCLA or Dr. Robert Spetzler at the Barrow Neurological Associates in Phoenix to ask who they'd recommend if you can't go out of state.  They are supposedly the two leading neurosurgeons for these kinds of vascular problems.

Good luck to you!

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