Monday, December 26, 2016

Surgery - The Functional Hemispherectomy

When Byron, Bob and I first met Dr. Akman, the head of Columbia Presbyterian's Epilepsy Center, we were very impressed with her credentials and experience with Epilepsy.  I also knew, going into the meeting, that she would bring up a surgery that I had heard of, but never considered an option or a necessity for Byron -  Hemispherectomy.

This surgery, mostly now done as a Functional Hemispherectomy, is when a surgeon "disconnects" the side of the brain that is causing seizures.  Through the Corpus Callosum, a broad band of nerve fibers joining the two hemispheres, the surgeon "unplugs" the damaged brain hemisphere, giving the patient an 80% cure rate for seizures.  This surgery was brought back into regular use by Doctor Ben Carson in the 1980s (a famous presidential candidate) in his former incarnation as prominent neuro-surgeon at Johns Hopkins. At that time they were doing Anatomical Hemispherectomies, where they actually removed the brain tissue itself, but this is not often done anymore.


Because Byron had a stroke pre birth, his right hemisphere looks like this.  This is his actual MRI when he was an infant.  You can see that there is very little brain matter on the right side.  The seizures are emanating from the scar tissue in that white area.







After we discussed the possibility of this surgery with Dr. Akman, she asked me how I had heard of the surgery. I told her that I had heard from other mothers of children who had Byron's condition and online groups.  She was very upset that I had not heard about it from any doctor or Byron's former neurologist.  She told us that there is still such a stigma about this surgery that many families and even doctors, though it can provide a cure, will not consider it.

I told her that if all goes well with Byron, if he has the surgery, I would be happy to talk to other parents or even doctors about our experience. She looked very moved and she said "You can be my voice!"  So in keeping with that promise, I thought i would make this post a little more detailed than usual.

After Byron's endless video EEG and MRI, the Chief of Pediatric Neurosurgery at Columbia, Dr. Feldstein, told us that Byron is an exceptionally good candidate for this surgery.  The right hemisphere, being the non-dominant hemisphere, has fewer side effects upon disconnection e.g. no loss of speech.  (The speech center is usually on the left side).   And Byron has so little brain matter on that side anyway, he felt that it is very unlikely that Byron is using much of it for normal functioning.  

But there are several next steps.  We heard that after we left the hospital, they presented Byron's case to the Nuerology team, as is the typical protocol.  During that meeting, other Eleptologists felt that we hadn't tried enough pharmaceuticals yet to warrant a surgical intervention.

So, first we have to exhaust another course of pharmaceuticals, and this is not our first choice.  Dr. Akman has prescribed an evening dose of Diazepam (Valium), in addition to his Trileptal, to see if this will calm the night spiking.  She admitted that she does not think this will work but it needs to be tried.  The almost constant night spiking that Byron has, ESES, is nearly impossible to cure without heavy, and potentially toxic doses of medicine.  Fortunately she is not asking us to go to that extreme route.  (ESES can happen, and does for many children, on both sides of the brain, and these children do not have a potential cure as Byron does.)

Then, at the end of January, he will go in for another shorter video EEG, and if the subclinical spiking is still present, we move forward towards surgery.  

Byron also needs a Functional MRI, to check which parts of his brain do what, but that can be done in this time frame as well.

A word about CBD oil.  Many people have reached out to me about Cannabis Oil.  We have researched this extensively, and discussed it with Dr. Akman. She does not recommend it for Byron and from what I have researched, when the seizures emanate from a known infarct, the injury to the brain, the CBD oil does not help much at all.  And when speaking to other mothers who are in the same boat as we are, the CBD oil was not helpful.

Surgery is our best option at this juncture.  If the constant subclinical spiking is gone at the end of January, then YAY!  But if not, we move towards this scary but necessary option.

Of course we asked what the outcome would be.  The surgery takes about 8 hours. Best case scenario, Byron wakes up with minimal side effects, is gone from the hospital after two or three days, and is back in school in a month.  His seizures and subclinical spiking go away, he has a clean EEG, and we ween him off of all medicines for good.

This is the outcome we pray and ask for blessings for. And we know it is possible.  Byron's recovery from his Selective Dorsal Rhizotomy was the quickest they had ever seen in the hospital.  But even if it is not that quick or complete, we can work with that too.

And as always, I will keep this blog updated about Byron and his wonderful world!

This link takes you to a very sweet video of a man in Wyoming who lights a tree for every child in the world who has had a hemispherectomy.  It started when Ben Carson operated on his granddaughter.  Now he has lit hundreds of trees.   It is the Hemi-Lighted Forest of Hope.

http://www.kgwn.tv/content/news/Hemi-Lighted-Forest-of-Hope-406163345.html










47 comments:

  1. Thanks for this. I've been wondering what is going on. You can count on my blessings. Much love

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  2. Thank you for the update. All our best.

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  3. Beautiful and clear Denise. The video is so inspiring too - the never give up aspect is especially strong. Praying for Byron and for his doctors, and sending blessings.

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  4. We are holding your family in our hearts.

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  5. HOW MY BABY GIRL BABY OVERCAME CONSTANT SEIZURES.

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  6. I had my first seizure. I was in high school and didn't want anyone to know that I had epilepsy. I had seizures on two occasions. I was so ashamed and didn't want people to think that something was wrong with me. I finally got to the point where I told people that I had epilepsy. I came to the place that I realized that I had to own my epilepsy or it would control me. Epilepsy hadn't really affected my life until about 9 years ago after my first child was born... I am a wife and mother of two beautiful children. I have lived with epilepsy for 20 years Yet, my life has been dramatically impacted by epilepsy. I had search for cure online without no hope. I met a Man called DR Lewis hill, i contact him I made an order of his medicine and I do not experience seizure anymore i was cured form it. So if you are in the same situation as mine contact him on this email drlewishill247@gmail.com

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  7. I myself have epilepsy. Not to this extreme with grand mail seizures daily, but it still affects me in other ways daily. I am on medicine, which has slowly stopped working and I notice my twitches, blank stares, and memory loss (even in the midst of a sentence) starting to return. The side effects of this drug is noticeable and painful to deal with. It is so strong that if a normal person were to take my dose, they will die of an overdose.when i was going through the internet i come across Owens post thanking Dr Lewis hill for curing his seizure problem, and i got the contact of Dr Lewis hill and i quickly contacted him then he made me to know that the medication is 100% cure, and that was how i got the medicine which i used, after which i went for medical test It worked! Over a year now, i have not show any symptoms of seizure and I believe that am cure permanently if you need his help email him on drlewishill247@gmail.com

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  8. My daughter suffered from a terrible seizure for more than 9 years which started after she turned 7 we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and screamed most times. She usually tells me she feel pain. This were steady pain that disrupted her entire life, even at night she screams even more because the seizure become painful because everywhere is quiet and she slept less because of this. I was able to contact Dr.lewishill. on the matter and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have seizure, do not hesitate to contact him on drlewishill247@gmail.com for advice and for his product. I hope this helps someone out there.

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  9. I myself have epilepsy. Not to this extreme with grand mail seizures daily, but it still affects me in other ways daily. I am on medicine, which has slowly stopped working and I notice my twitches, blank stares, and memory loss (even in the midst of a sentence) starting to return. The side effects of this drug is noticeable and painful to deal with. It is so strong that if a normal person were to take my dose, they will die of an overdose.when i was going through the internet i come across Owens post thanking Dr Lewis hill for curing his seizure problem, and i got the contact of Dr Lewis hill and i quickly contacted him then he made me to know that the medication is 100% cure, and that was how i got the medicine which i used, after which i went for medical test It worked! Over a year now, i have not show any symptoms of seizure and I believe that am cure permanently if you need his help email him on drlewishill247@gmail.com

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  11. NATURAL & EFFECTIVE TREATMENT TO SEIZURE: Our son has temporal lobe epilepsy, He has seizure and had a grand mal with rage, Our son's seizure is constant throughout the day according to EEG results. We had used several medicine which include: 600 Epitol 100 Zarontin,
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  12. THANKS TO DR EWOIG FOR CURING MY SON
    My son has partial epilepsy for the past 18 years. Dr's have tried various means but he has seizures almost every month. The first epileptic occurred when he was five years old. i took him to a specialist who subscribed anti-epileptic medication. From then on he had to take four capsules per day, but most of the time he had seizures until I got to know about Dr.ewoig product to cure epilepsy. we order for the product, now i can tell you my son is now living a better life thanks to dr ewoig His herbal remedy is the only permanent solution to Seizure. You can always contact him through his email for more information(drewoig18@gmail.com)

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  13. WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
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  14. I am Sophie from Canada, I once suffered from a terrible and Chronic epilepsy ,since i was bone , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 31 years, this was really a terrible illness ,on thin one day that i was going through the internet,and i came across a post of Mrs Kate on how his son was been cured from epilepsy through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine i used it for 4 weeks as prescribed and i was totally cured of epilepsy within those week of usage,on thin now i have not experience any sign of seizure.if you need his help you can Contact this herbal doctor via his email drwilliams098675@gmail.com for help

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  15. Am One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now,he do have the attack two to three times a week,which is affecting is education and his life.i got the contact of a doctor from the post of one Mr paul thanking him for curing his seizure problem,i got the contact and contacted him then he made me to know that the medication is a permanent cure, and that was how i got the medication which i used on my son,and for six month now there have been no sign of seizure in him again.any one with such problem can contact him on his email drwilliams098675@gmail.com

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  16. My daughter suffered from a terrible seizure for more than 9 years which started after she turned 7 we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and screamed most times. She usually tells me she feel pain. This were steady pain that disrupted her entire life, even at night she screams even more because the seizure become painful because everywhere is quiet and she slept less because of this. I was able to contact Dr.lewishill. on the matter and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have seizure, do not hesitate to contact him on drlewishill247@gmail.com for advice and for his product. I hope this helps someone out there.

    ReplyDelete
  17. NATURAL & EFFECTIVE TREATMENT TO SEIZURE: Our son has temporal lobe epilepsy, He has seizure and had a grand mal with rage, Our son's seizure always occur twice in a week according to EEG results. We had used several medicine which include: 600 Epitol 100 Zarontin,
    150 Epitec X2 Daily, Topomax lasted for about 3 days, but I put an end to that due to my son losing weight and being lethargic. I recently got dr williams herbal medicine,that's a natural medicine that cure my son Epilepsy with no side effect. It is an herbal medicine. it is a permanent cure and effective treatment of Epilepsy, for more info, you can also contact Dr.William with this email drwilliams098675@gmail.com for advice and his product

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