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










42 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.

    ReplyDelete
  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.

    ReplyDelete
  4. We are holding your family in our hearts.

    ReplyDelete

  5. HOW MY BABY GIRL BABY OVERCAME CONSTANT SEIZURES.

    I am sharing this story as a mother. It could help mothers out there who their love ones are going through pains from seizures. My baby girl was 4 years old when she had 7 episodes of epileptic seizures for straight 8 months. Six episodes were with fever and 1 seizure without fever. We used Valparin twice a day but my baby seizures got worse and she developed other health complications. My child was going through pain and I was afraid of leaving her alone to herself so I constantly watched her.
    To help my child overcome these frequent traumas, I went in search of medication outside the English medications we had used without result. I was lucky to read in the internet about a mother whose 15 years old child was cured from epilepsy through herbal medication. I contacted the doctor through an email address I got from a testimony shared on the internet. I used his medication for my baby and the seizures stopped. I wanted to make sure that it has cured my child, so we went for EEG and MRI scan all reports showed normal!. My baby girl is 7 years seizure free., and I am happy to tell it to the world, that there is a cure! Don't give up on that situation. You may contact Mohan, where I found a cure for my child via drajaymohanbose@gmail.com

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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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  10. Hello viewers all over the world am Jacky scob, I want to testify of what Dr Lewis hill did for me. i was having a very notorious and serious sickness called seizure and i was very in lost of hope i never believed i was going to be cured until i meant these great man called Lewis hill who God sent to help me cure my sickness . just a few moment with these great man he cured my infection His herbal remedy is the only permanent solution to Seizure. i want you to know that all hope is not lost until every thing is done if you also have these following infections contact his email 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,
    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 drwilliams098765@gmail.com for advice and his product

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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. MY SEIZURE FREE STORY

    If you haven’t gone through seizures, you cannot understand the pain, the shame and above all, the fear. You are afraid of falling off; afraid of drowning in a pool, afraid of everything, because you cannot tell when the next attack will come, even what you love to do become a thing of fear. I went through all these fears, today! It has all become a PAST. I have been seizure free for 4 years now. Well Thanks to HILTON Herbal Anti-Seizure Medication which totally freed me from fears caused by seizures.

    I never believed epilepsy can be cured, not after thousands spent on buying all kinds of English medications recommended by Doctors I visited during my dark times and harsh side effects I had while using these drugs and countless falls most times ending up in ER. My seizure started when I was 25, I had Grand Mal which lasted for years. While I had it, I was always hopeful and believed the best. I was always looking out for a cure. From website to blogs and following comments.

    My breakthrough came when I followed a link shared about seizure cure, after reading through the blog, I contacted Dr. Mohan got HILTON and my seizures became a past. I am sharing this SEIZURE CURE blog link to help people find help just like I did. I hope you share your success story to help others too. Dr. Mohan can be reached via his blog. www.seizurecure.blogspot.com

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  14. WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
    my son have been a patient of epilepsy . I had tried a lot of anti viral med prescribed to me by doctors over how many years now but I could not see any improvements in my son symptoms. One day while going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from epilepsy,quickly i contacted him and he prepared a herbal medication for my son which i received and he used it as instructed by dr williams. After few weeks the improvement were very visible. the sleepiness and the abnormal behavior stooped ,on thing now he is so full of life. I would recommend this to all my friends,families,around the globe suffering from epilepsy.you can contact him through his email on drwilliams098675@gmail.com.for advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS

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  15. 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

    ReplyDelete
  16. 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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  17. 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
  18. 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

    ReplyDelete

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  20. what a miracle Please help me thank Dr Ehiaguna for his good work I really believe Herpes have cure I was Herpes positive over since 1year plus before I come across a comment Dr Ehiaguna that he have cure to any disease and virus but when I saw it i have it in mind that he can’t cure Herpes I just decided to give a try I contact him that night lucky to me he said yes but I don’t believe him I think it was a scam or some thing like that but I still hold on to see the work of Dr Ehiaguna if he is saying the true he ask for different thing and some question about me I give him all the detail he needed and I wait to see his reply to my problem after all the thing is done he ask me to go for check up I went for Herpes test I cant believe I was negative thanks Dr Ehiaguna for help me for not dying at this young age if you need help contact him now drehiaguna@gmail.com or WhatsApp him on +2348073908953 and He also have herbs medicine to cured the following diseases; eczema,urethra wart,chronic problems.Herpes, Cancer, Als,Hepatitis, Diabetes, HPV,Infections,ulcer  ETC

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    My husband got pissed off and left the state to MO and I couldn't handle it anymore cause I couldn't take it when I was pleading with the neighbor for food just to feed my kids.  I was so ashamed of myself and people always asked me what is going on and i was so scared to tell them the truth about what I'm going through, i really wanted to get through it cause have spent so much on it and gave all that i had into it but it seems not to be enough until one day a friend of mine who i knew long ago decide to take me out and I didn't want to accept at first anyway i went out with her and while i was smoking and drinking i didn't know when i told her everything and she screamed and tell me to hire wizardharry@programmer.net that she has been a victim of it as well, i quickly emailed Wizard Harry, my message that day was really crazy, I wrote Hey magic wizard, someone is dying and need her money back from fraudsters, please don't get mad at me, i need your help. he replied me and asked me of the wallet address i sent to and that of the name of the binary option, i gave all information as requested by him and he asked me to send him my own wallet address where the money should be reversed back to and i did. Honestly, it amazed me when I got 17 bitcoins in my wallet, I thought it wasn't real but I sold some of it and I got cash and I informed my husband about it he didn't believe it until I showed him. it was really a whole lot of experience and I urge everyone to contact wizard Harry as soon as possible, he made me know that if ever I need any job that requires hacking skills he is very capable and that include, hacking of account, GPS tracker, mobile spy, compute remote tricks, clearing of record, etc. email wizardharry@programmer.net or WhatsApp +18078086168

    ReplyDelete



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  35. I have tested this private investigator for my divorce case and cat fishing he is actually good at efficient at his job you should contact him for any hacking issues you have contact James on WhatsApp ‪+1 (213) 295‑1376 message him and come back to thank me later

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  37. I will advice fraud victims to seek the help of wizardharry@programmer.net for a recovery of lost funds, after i have been a victim of fake hackers i was referred to Wizard Harry by a freelancer member and that's how i was able to get in touch with him and have my funds recovered. a big thanks to Wizard Harry.

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  40. Sir Lionel Copeland happened to have the other side experience online and tell out what it feels like after dealing with it alone for a long time roughly about 5 to 6 months, he wanted to spy on his wife so he decided to hire some hacker over the internet and this made him loose $9000 within 32 hours so he then explained himself that at that point he was frustrated cause that was all his savings so he decided to look for who to help him get his $9000 back but he ended up losing more on the internet to scammers. It was a very faithful day according to him after having some drink with a cigarette on his finger while scrolling on his phone when he came across wizardhary(at)programmer(dot)net and his Whats App contact as well (+1-807-808-6168). Honestly he was scared cause he thought he might have another bad experience with wizard harry, he took him two days to write to wizard Harry, and when he finally got in touch with wizard harry, things turned around and all his funds were recovered back by wizard Harry. Today Lionel Copeland is living a good life and he is very thankful to Wizard Harry 

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