husband's MRI follow-up today...

Discussion in 'The Watercooler' started by gcvmom, Aug 27, 2009.

  1. gcvmom

    gcvmom Here we go again!

    and we are hoping that the news is there is NO CHANGE in the remaining cavernoma in his right temporal lobe.

    We realize it's very possible the cavernoma has grown and would thus explain his increased seizure activity this summer. I hope he does not have to face a second surgery -- we've already decided if it comes to that, we will fly out to Arizona to consult the nation's top guy in this field since the brain area involved is much more sensitive/delicate and his current neurologist said he would have just removed the entire hippocampus on that side of his head instead of the more selective procedure we opted for last time (at a different hospital). We're always leery about people who are quick to cut anyway, but especially with this particular part of the body!

    husband has already had a few seizures today, and although they're not the convulsive type, they wipe him out.

    I'll let you know what we find out! Please cross your fingers :D
  2. house of cards

    house of cards New Member

    All crossable parts are crossed and prayers going up.
  3. Lothlorien

    Lothlorien Active Member Staff Member

    So, what the news? Praying it's good!
  4. gcvmom

    gcvmom Here we go again!

    Yes, the news is good! There is no change in the little rice-sized cavernoma. The fact that he continues to have these seizures is annoying. The neuro is telling us he doesn't think he wants to try bumping up the Trileptal because it makes husband tired.... but I'm not sure a I agree with that opinion. Yes, it does make him tired, but after this last increase to 900mg bid, the fatigue improved after a week or so. He started naming a few other seizure medications to try, but in the same breath mentioned some fairly negative side-effects that I don't think we want to even mess with (one involved permanent vision loss(!), another has to do with worsening depressive symptoms, which is something husband already struggles with and is why he takes Paxil). And then of course he says that if it becomes a real problem, husband should probably have a second surgery to remove the rest of the hippocampus on that side(!!!)

    So for now, we're relieved that there are no changes and plan on just leaving things as they are. I'm starting to wonder if husband should maybe look for a different neuro to manage this aspect of his care. I just don't like this guy's view of things. And like I said before, if it comes down to another surgery, we'll go see the guy in Phoenix first before doing anything else.
  5. DammitJanet

    DammitJanet Well-Known Member Staff Member

    GCV....I dont know if you would care to mention the medications he mentioned publicly or not, and if not, we could go to PM, but most of these medications are the ones we also use for our kids for bipolar! I would think you could find a medication that is also a seizure medication that would work that would help both problems. There are so many.
  6. gcvmom

    gcvmom Here we go again!

    Well, one medication mentioned was Keppra, but the neuro said it tends to cause psychiatric problems in some people. Then there were a couple more drugs that I can't even remember -- I think one was Lyrica -- and he said one is totally new and then another was a revamping of a very old drug. I'll have to look online later tonight to see if I can figure out what he said (nope, I didn't take notes :hammer: ). But neither one was an option in my mind. And then he finally said they had just been approved for a clinical trial of another new drug that is very similar to Keppra but with a slightly different profile. I still didn't like the side effects he mentioned, and he seemed like he was pushing it more because of the fact that they were doing the study rather than it being a good fit for husband.

    In all honesty, I think he did best on Lamictal, but he got a mild rash below his armpits with it and the neuro was very leery about risking it getting worse (like Stevens Johnson Syndrome).

    So for now, we're going to stick with Trileptal, I guess.
  7. totoro

    totoro Mom? What's a GFG?

    I am so glad that it hasn't grown at least!
    Sorry about the seizures... medications are such a pain to figure out which hoovers because we all know what its like!
  8. KTMom91

    KTMom91 Well-Known Member

    Glad the growth hasn't gotten any larger...hope they can figure out a medication that works for him without any strange side effects.
  9. susiestar

    susiestar Roll With It

    I am not sure about the other medications but I CAN speak about Keppra. Jess is NOT unusually sensitive to medications. It took 11 MONTHS to titrate up to a therapeutic level of Keppra. She was 100% unable to attend school because she was missing over half of each lesson due to absence seizures. The biggest problem at first was she felt like she had a horrible cold - for almost 2 MONTHS. It also caused other problems.

    I have been on it for almost 2 months, and am NOWHERE close to a therapeutic level. I have felt sick, had a constantly upset stomach, and have an incredibly hard time communicating. Choosing the right words is TORTURE for me. Each post that I send here is carefully typed and then edited several times. You would totally NOT understand the first draft. I spoke to the nurse and she said that they want me to give it a couple more weeks. I have not been able to increase the dose from the starting dose, so coming off of it shouldn't be too bad.

    Lyrica is great for me. I take it for nerve pain in my hands and feet. I started it 4 years ago and it has been great. Few side effects and it controls my migraines better than topomax ever did.

    I urge you to get an appointment with a doctor who will change his medications. NO ONE should be scalpel happy in your brain. Just leaving things as is unless he wants surgery is just NOT okay. There are a LOT of medications that help seizures.

    EVERY medication, even aspirin and tylenol, has side effects. Listen to one of the drug commercials on tv. Does that list sound like anything anyone would take? EVERY single medicine has a list like that.

    You just have to weigh the possible benefit against the possible risk. It may be that you want to stick with trileptal, but it should NOT be that that medication is the only alternative to surgery, esp brain surgery.

    The trileptal side effects were so daunting that we almost did not let thank you trial it. We chose to because he was inpatient at the time and would be closely monitored. For him it had no effect, literally less effect than an M&M.

    I am so glad that his oma thingy hasn't grown. Now you need to call to see what other neuro you can find!
  10. Star*

    Star* call 911

    Well......I'm no expert, and I've been known to have my moments of non-serious medical information, BUT you tell Mr. Pirate man that I know exactly what the problem is. I have sent pictures along to help so you can print them out for visual aids. You tell him if he follows my instructions he should be good as Gnu in NO time.

    You said he has a rice sized
    -this is not healthy- it's the worlds largest rodent. No wonder he can't concentrate.
    Then you said he may have to have his entire
    -removed. Again, no expert, but that just has no place in a mans brain.

    In all seriousness.....I hope they find something for him and that this little detour of humor provides him with a laugh. I can't imagine what both of you go through daily. Sending hugs & prayers, and something for that rash. (DF uses steroid ointment that is just awesome and works nearly overnight) seriously - I'll send some. ;)

    Not a Doctor
  11. TerryJ2

    TerryJ2 Well-Known Member

    Oh, Star!!!

    Gcvmom, I'm glad the tumor hasn't grown but am so sorry the seizures are continuing. I agree with-your line of reasoning about the medications. Make sure the dr listens to you!
  12. house of cards

    house of cards New Member

    Great news about the cavernoma NOT growing!!
  13. slsh

    slsh member since 1999

    gcv - so glad to hear that the cavernoma is stable. Great news!!!

    Too bad you can't get husband into a pediatric neuro. ;) There is a huge difference in philosophy between pediatrician neuros and the adult neuros I've dealt with - the latter tend to be more "deal with it". Not aggressive at all in terms of tackling the seizures and at least trying to stop them. I don't know why there's such a noticeable difference in treatment philosophy, but... there it is. The pediatrician neuro's goal was *always* seizure suppression - I really don't get the feeling that a lot of adult neuros see that as the goal.

    I think it's the same situation that we all ran into when trying to decide if our difficult children needed to be medicated and if so, what would work. It's an art to find the right medication or combo of medications. With the right "artist" I think medication management of seizures is possible, at least so that it doesn't interfere as much with- husband's quality of life.
  14. Lothlorien

    Lothlorien Active Member Staff Member

    That's great news! I'm glad there was no increase. Perhaps doctor can increase the Trileptal at night first? Missy's on a slightly higher dose at night. So far, it's been okay. No side effects. She's been taking the extra dose at night since Feb, when she had her last seizure. Most of her seizures have been morning or early afternoon, so this seems to have been working out well.
  15. gcvmom

    gcvmom Here we go again!

    Yes, I just don't understand why the neuro wouldn't even TRY increasing the Trileptal. So that's another reason why I think husband should consider looking for another doctor. Although, this guy is head of the epilepsy center at a local teaching hospital, and he's the one everyone says we should go to.... Maybe we should check out someone up at the hospital where husband had his surgery. It's just that it's so far to drive (50 miles each way) for an appointment -- but hey, I already drive there for difficult child 1's GI doctor...

    And this hospital (where the current neuro is at) seems to have a reputation for wanting to just cut something out if it's causing a problem. They wanted to remove my dad's bladder instead of treating his bladder cancer. And their first reaction to husband's issues was to remove the hippocampus on that side. Argh. Personally, I like to try to keep as many of my body parts as possible, and try non-invasive, or minimally invasive techniques first.

    Now that I've thought about this here... I think I'll have husband call his surgeon and ask about a referral to a neuro in their area.

    PS Thanks everyone for the feedback on medications, etc. It's very helpful to know what to expect. And Star... I think husband needs that ointment for his brain... :p