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Thread: Gray Matter Heterotopia patient undecided

  1. #1
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    Gray Matter Heterotopia patient undecided

    I'm new to this forum so hopefully I have found the correct spot for this thread. I am a 37 y/o (RH) male that was diagnosed this year with gray matter heterotopia (benign) in the right frontal lobe. To give you some history I will start when the general seizures began.

    Just before the age of 30 I thought to have my 20s go out in a bang by taking a poker run in Las Vegas along with some other friends. We were there for 4 days but the 3rd day was when my troubles began. I had been up well over 48 hours with some light drinking throughout that time. I am not a heavy drinker by NO means and have always been the DD with my friends to give you an idea. Well into the 3rd day around noon my buddies finally pulled me from the poker table and asked me to go rest for later that evening (last night in LV). So we are in the room watching some terrible movie and I thought I had just dosed off on the couch. To my shock I awake with 4 fireman in the suite and a buddy telling me I had a general (grand mal) seizure. At that time I contributed it to the self induced neglect I had just put my body through since there was no previous history.

    After that first time I would have a general seizure once every 9-11 months apart up until this year. I was a patient of 5 years for my previous neurologist and through that time we did numerous EEG tests, CT and MRI scans. Other than medication (Depakote ER, 200mg) there was no reason or solution he could provide me with. All my scans of my brain according to him showed no lesion or any indication of trauma that would be the cause. I even was told if they needed an updated picture for medical books of a perfect brain mine could be a candidate. Again the grand mal seizures were spread out but I could not tell you how often any focal seizures came on during that 6 year timeframe.

    Fast forward to this year..... In the beginning of the year (Feb.) I had another grand mal after just having one at the end of Nov 2012 which obviously began to trouble to me. Then one in March, 2 in April and by the time June rolled around I had lost count as they became more frequent and extremely violent. I began to see another neurologist in Chicago at Northwestern and after another round of testing (CT, MRI & EEG), the results finally came in with an answer to my downhill trend. Gray Matter Heterotopia of the right frontal lobe the size of a finger that is connected to the right ventricle was the diagnosis. I was born with this condition but it has only been an issue in my life for the past 7 years. It has not grown in size other than as my brain size has changed throughout my life. I called it a tumor in front of the neurosurgeon recently and he stopped me immediately and corrected me calling it a lesion, not a tumor! (I found this funny for some reason). All my seizure activity is nocturnal and thankfully has not crossed over to when I am awake.

    Discussion of surgery began in November after having a 4 night stay at the hospital for 24hr EEG monitoring the previous month. I was told it is located in the best possible spot for extraction, just above my right eye in the outer section of my right frontal lobe (closest to the skull) but connected the right ventricle. I was also told after the 4 day hospital study that they have not seen a patient with such violent episodes that I encountered during my stay. That is the reason for the early discussion of surgery so soon without continuing attempts to juggle medications that more than likely will not control all seizure activity.

    Now that the my history is out the way I was hoping to find some opinions from postop patients that had similar frontal lobe surgery and the any issues as a result. I'll be honest, I'm on the fence.... I am a strong willed person that would be fine taking a cocktail of medications but their effects seem to be dimensioning since we have been changing dosages to control the grand mal seizures. Then there is the other side to that coin... my family that I love so much, I would like nothing more than to take away the fear of "when is daddy going to have another seizure?" or my wife's constant fear something is not right or is going to happen. In the past month we have seemed to get a grip on my grand mal seizures but the focal ones still remain and I just don't know what the best route is moving forward.

    The concerns with surgery are based off information I have read on the right frontal lobe and the results that scare tissue may become an issue with getting back to "normal" life or even a "normal" me. I have also seen some posts on this board as well as others talking about the physical issues after surgery and the toll it takes. I guess I'm just looking for any kind of feedback that might relate with my direct condition to help with the unknowns swimming through my mind.

    Sorry for the short story but I thought it was best and would help get any feedback to calm an unsettled mind.

    Thanks for the read!

  2. #2
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    Sorry to hear about your tumor. It will probably come as no surprise to you to hear that to folks around here you will seem like something of a lucky duck.

    My advice: get the thing out.

    It can be removed safely, which is a very good situation to be in. Why would you want to keep the thing?

    Personality changes can, as you know, be a problem with right frontal lobe tumors. While it's true surgery could conceivably cause such issues, it seems to me likely that the tumor itself will eventually cause such issues. However, you will want to ask your neurosurgeon what he thinks is the likelihood (in percentage terms) of this happening, both with and without the surgery.

    There is also no guarantee that surgery will stop the seizures. However, I know two people who have had non-maligant brain tumors removed and neither ever had a seizure afterward.

  3. #3
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    Quote Originally Posted by GBMsibling View Post
    Sorry to hear about your tumor. It will probably come as no surprise to you to hear that to folks around here you will seem like something of a lucky duck.
    I seem to recall hearing this a time or two when it comes to my GMH.

    Quote Originally Posted by GBMsibling View Post
    My advice: get the thing out.

    It can be removed safely, which is a very good situation to be in. Why would you want to keep the thing?

    Personality changes can, as you know, be a problem with right frontal lobe tumors. While it's true surgery could conceivably cause such issues, it seems to me likely that the tumor itself will eventually cause such issues. However, you will want to ask your neurosurgeon what he thinks is the likelihood (in percentage terms) of this happening, both with and without the surgery.

    There is also no guarantee that surgery will stop the seizures. However, I know two people who have had non-maligant brain tumors removed and neither ever had a seizure afterward.
    My "hope" is all activity stops but with the extreme progression of my seizures this last year it is not something I expect. As to why would I want to keep this thing? The obvious 800lb gorilla is my personal post-op recovery; the length and toll it will bring on my family, let alone myself. It's not what keeps me from making the decision for surgery but I am just looking for someone who has experienced a similar procedure to help rest my mind a bit on the aftermath. I can ask my neurologist and my neurosurgeon all day long about percentages but I'm looking for opinions from patients.... not percentages. My life can't be divided or multiplied.

    It's hard for people to discuss this after the surgery let alone before it, I have tried to reach out through my neurosurgeon for previous patient opinions and still try without luck. I'm trying all avenues to reach out to get some perspective so I can make the "best" decision. My current life means a lot to me and it's hard to change it... even if it is short lived because I "keep" it.

    So I guess you can add fear as another reason... Not of dying, but for living life to which I can not do for myself. I'm probably just one of those patients that really doesn't understand how lucky they have it but that's what I'm trying to figure out for myself before I dive right in or turn my head and run.

  4. #4
    Brain surgery is one of those things which is a scary topic, but in reality, while a serious surgery, usually does not have the morbid outcome people think of in their minds. My own tumor was removed from the left temporal area, along the motor cortex, and while I have suffered some motor effects from the surgery, there has never been a moment when I felt it was not worth it to get the tumor out. There is a recovery period, but if you have a surgeon you trust, you should be fine.
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  5. #5
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    Thank you for the offering mccindy. I hope everything continues down the positive path.

  6. #6
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    I agree with Cindy. When I was diagnosed, my NS said he thought it was most likely a low grade glioma. He said they are slow growing, and that we could do surgery, or take a wait and watch approach. Brain tumors don't come with a manual to guide you, so you kind of have to wing it. I thought it over, and figured that it would only grow and cause more problems, so I went for the surgery. Of course I was scared, and didn't know how things could turn out. But I had a NS that I had confidence in, and the whole thing went better than I ever expected. The most common adult brain tumor is glioblastoma, and it's the one with the worst outcomes. I think you should do what is best for your family, and count your blessings that this will most likely have a good outcome. Just my opinion, of course. My best to you, and please come back here and share your story so others may benefit from it.

    Scott

  7. #7
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    To add to what mccindy and others have said.

    I had (an unfortunately rather malignant tumor) in my right frontal lobe that was the size of a lemon. I had a craniotomy to have it removed (no choice in my case). The recovery was surgery was remarkably quick, and I've (seemingly) have not had any cognitive, physical, or personality deficits (at least arising from the surgery).

    I had an operation on my ankle which was a much bigger deal and with a much slower recovery. As long as you've got a good surgeon picked out, I'd definitely go for it. Be aware that you may still suffer seizures after your op which might mean remaining of an anti-epileptic drug for months or more since you will have had brain trauma.
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

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    Nikos and Stageleft, thank you for your additional views on the aftermath. Nikos, your story especially brings me a bit of calm with regards to my own surgery.

    I hear most of you mention the continued growth of the tumors but mine is a different case according to my neurologist and NS. When they first diagnosed me, I mentioned tumor and they were both eager to correct me saying it was a lesion from birth (birth defect). Where the remaining neurons in my right frontal lobe did not make it to their end destination and clustered together while being in a fetus state. Not trying to say this is again brings a reason to keep me from surgery but more so realizing maybe how lucky I am with this situation.

    Either way I thank you all for any feedback, it is a scary situation for anyone to be in no matter the circumstance. In regards to further seizures, both doctors have said in my case, the likelihood for the return of general seizure activity should be very minor if any at all. The local seizures may continue but as most of you know, I will have a chance to "re-train" my brain to stop this activity with continued use of medicine after surgery.



    PS: this site needs a "Thanks" button by the reply features.

  9. #9
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    Cool

    We have had many, many, many successful brain surgeries on this sight....in fact, I would have to say the success rate is way up there! And yes, we have some not so successful (my BFF). But, we know there are risks, as there are with any surgery, so you have to be sure of what you want to do and have trust and confidence in your surgeon and doctors.

    If you're still undecided...you can always get a second and/or third opinion (highly recommend this!). And then, if they (docs) are all in agreement and are confident that the surgery will be successful and minimize the seizures....sounds like a no-brainer to me! (sorry, couldn't help myself!). Best of luck to you and keep us posted!

    Deb

  10. #10
    I had a tumor removed from my R frontal lobe almost 3 years ago. I was in the hospital for 3 or 4 days and then returned to work after 3 weeks. As others have mentioned the surgery and recovery were not as hard as most of us originally thought it would be; that is baring any complications of course which are rare. It is important that you trust your surgeon and that all of your questions get answered. If I had to choose again I would always go for the surgery.

 

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