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sarahlou
@sarahlou

Posts: 7
Joined: Jul 05, 2018

Second surgery for my 28 year old son. Advice needed please.

Posted by @sarahlou, Thu, Jul 5 5:40am

My 28 year old son, David, has had severe epilepsy since he was 11; mainly nocturnal, tonic clonic seizures, has been in status several times. 5 years ago, he underwent intracranial eeg followed by resection of the right half of his frontal lobe. He is intelligent, sociable, a keen volunteer and still has seizures. So, he is on a waiting list ( we are in the UK) for a second surgery. This would involved him being awake, because they are going very close to his speech and motor skills areas. A 20% chance of emerging from surgery seizure free has been suggested as have a list of likely negative outcomes, including speech and mood issues, and possible loss of mobility on the right side. I do not want him to have such a highly risky surgery, but he is grasping at the chance, however slim, to be rid of seizures. He is often reminded of the high mortality rate for people with nocturnal seizures of his severity. I feel that the hospital are pushing him towards this surgery and I am utterly terrified. I'd be very grateful for any advice. Thankyou.

REPLY

Hi @sarahlou, welcome to Connect. First I'd like to introduce you to @patrassi. She, too, is considering a second surgery for her son. While your son's differ considerable in age and type of seizures, I thought you'd like to meet one another as mothers facing difficult decisions. I'd also like to bring @dawn_giacabazi @sall and @kerivb into this discussion as they have talked about nocturnal and/or tonic-clonic seizures in the past.

Sarah, I can imagine that you are utterly terrified. As a mum, you're seeing the 80% side of the equation, whereas your son is probably focussed on the hope and the promise. Are you able to speak to the care team's social worker and/or lead physician to tell them of your concerns? For your own peace of mind, it would be helpful to understand the care team's position and let them know of your fears. No one should feel like they or a loved one is being pushed into a decision as important as this one.

@colleenyoung

Hi @sarahlou, welcome to Connect. First I'd like to introduce you to @patrassi. She, too, is considering a second surgery for her son. While your son's differ considerable in age and type of seizures, I thought you'd like to meet one another as mothers facing difficult decisions. I'd also like to bring @dawn_giacabazi @sall and @kerivb into this discussion as they have talked about nocturnal and/or tonic-clonic seizures in the past.

Sarah, I can imagine that you are utterly terrified. As a mum, you're seeing the 80% side of the equation, whereas your son is probably focussed on the hope and the promise. Are you able to speak to the care team's social worker and/or lead physician to tell them of your concerns? For your own peace of mind, it would be helpful to understand the care team's position and let them know of your fears. No one should feel like they or a loved one is being pushed into a decision as important as this one.

Jump to this post

Sarah, I so agree….you have to open and sometimes point blank with your fears, questions etc….my daughter has tonic clonics but are controlled. In any form of treatment it is your and your sons right to make the decision Doctors are opinions are options, if you don’t feel right then seek another opinion. Never enter into a treatment plan unless you or both feel ok with it…

Hello @sarahlou
I can certainly understand you being terrified. I believe your totally correct. Your son is not being honest with himself. The risks are not worth the potential outcome. IF, things don’t turn out as he hopes and the results turn out to have some or all or even worse bad effects perhaps even worse side effects than either of you had been told about, what then? Who has to live with those effects, obviously he will, but what about you, his family, his friends. Who might have to care for him? 20% positive outcome is absolutely ridiculous to even consider for such a high risk surgery. I agree that the doctors may well be pushing your son into having an unrealistic surgery. NO ONE would have such a DANGEROUS and radical surgery as this especially with such poor odds.
Your son is desperate and not thinking clearly, at least in my opinion.
I have had Epilepsy for over 50 yeas and had active Tonic Clonic, Focal Impaired Awareness
(old terminology is “Complex Partial” or even older term “Psychomotor”) and Generalized Absence seizures and numerous Convulsive Status Epilepticus Seizures. I have had over 13,000 Seizures in my 46 years of active Epilepsy. My seizures have FINALLY ceased, why is anyone’s guess but by the grace of God they are gone, at least for now. You know Sarahlou, your sons seizures may also just one day abruptly stop too. No one can predict it or how seizures will be in the future although they continue to try. My advice is to pay them no mind. ABSOLUTELY NO ONE CAN PREDICT WHEN, WHERE, WHY, OR FOR HOW LONG SEIZURES WILL CONTINUE. Doctors at Stanford University told me and my parents I had Intractable Epilepsy, they were proven wrong. Many doctors were wrong that I went to. Doctors are frequently wrong of course don’t think any will ever admit it. My cousin was never told his Diaphragm could be paralyzed during his three heart operations but it was. Now his abdominal organs are in his chest and is on 24/7 oxygen, Unexpected complications are always a possibility.
Your son like I said is desperate and grasping at straws. The odds are to unrealistic to go through such a radical and dangerous procedure. There are other non invasive things to try or at least less invasive things that could be tried first. His doctor has a responsibility to inform him of all other possible treatments. Obviously Anticonvulsant drugs are the primary Epilepsy treatments which are 70% effective but sometimes take years to get the correct dosage and cocktail. VNS (Vagus Nerve Stimulation) is another possible treatment but was not something I chose due to its poor odds (20-55% seizure control) and side effects and the coil around the nerve at that time could not be removed but who knows, it may work for him. Diets, (Ketogenic diet) vitamin therapy has helped some (have his bit D checked) there has also been research on Melatonin for seizure control although I’m not familiar with those studies. Also Marijuana without THC has really helped many especially children. There are NeuoChiropractors too, I personally know one who treated a boy who was having 100 seizures a day, he hasn’t any since his treatment. There are also other implants that can stop seizures before they start and are much less radical. Biofeedback is another alternative treatment I have seen it work, and also not have any affect. Surgery should always only be considered as a very last resort, especially brain surgery. I have known to many people who have had bad surgical outcomes. It is always a risk and that should never be forgotten. I have studied Epilepsy for over a half century and am by far no expert but have seen a lot and have been in contact with people from all over the world. I’ve seen things I wish I hadn’t and heard and read things I h wish I hadn’t as well. One thing though, It’s never as simple and easy as a lot of doctors want you to believe.
Best wishes and may God be with you and bless you both/all.

Liked by sarahlou

@colleenyoung

Hi @sarahlou, welcome to Connect. First I'd like to introduce you to @patrassi. She, too, is considering a second surgery for her son. While your son's differ considerable in age and type of seizures, I thought you'd like to meet one another as mothers facing difficult decisions. I'd also like to bring @dawn_giacabazi @sall and @kerivb into this discussion as they have talked about nocturnal and/or tonic-clonic seizures in the past.

Sarah, I can imagine that you are utterly terrified. As a mum, you're seeing the 80% side of the equation, whereas your son is probably focussed on the hope and the promise. Are you able to speak to the care team's social worker and/or lead physician to tell them of your concerns? For your own peace of mind, it would be helpful to understand the care team's position and let them know of your fears. No one should feel like they or a loved one is being pushed into a decision as important as this one.

Jump to this post

Thankyou. I was brave and had a candid conversation with my son, about my fears and concerns. He has agreed to meet with my sister (a family therapist) and her partner (a Doctor) on Tuesday, without me, to talk things through. He admitted that he doesn't feel fully informed so has decided to defer his decision on whether to have surgery or not, for 6-12 months, during which time he'll access counselling and we'll work together on improving his quality of life. I feel enormously relieved.

Also with seizures it’s always a good idea to cut back if not cut out caffeine. Avoid getting over tired and cut out or at least cut back on any alcoholic beverages.
Blessings, Jake

Liked by sarahlou

@colleenyoung

Hi @sarahlou, welcome to Connect. First I'd like to introduce you to @patrassi. She, too, is considering a second surgery for her son. While your son's differ considerable in age and type of seizures, I thought you'd like to meet one another as mothers facing difficult decisions. I'd also like to bring @dawn_giacabazi @sall and @kerivb into this discussion as they have talked about nocturnal and/or tonic-clonic seizures in the past.

Sarah, I can imagine that you are utterly terrified. As a mum, you're seeing the 80% side of the equation, whereas your son is probably focussed on the hope and the promise. Are you able to speak to the care team's social worker and/or lead physician to tell them of your concerns? For your own peace of mind, it would be helpful to understand the care team's position and let them know of your fears. No one should feel like they or a loved one is being pushed into a decision as important as this one.

Jump to this post

That's amazing, @sarahlou. I like the sound of "candid conversation". I can imagine that was really hard to get started, but the relief you're feeling at having taken that bold step is clearly evident in your message. I don't doubt that your son was also relieved to have the conversation out in the open with you too.

I also agree with @kerivb that doctors provide information and options. You have every right to question and discuss those options without feeling coerced. I'm not sure if a second opinion is an option within the NHS in the UK, but it is worth asking about. Does your son have a team of doctors working with him?

@jakedduck1

Hello @sarahlou
I can certainly understand you being terrified. I believe your totally correct. Your son is not being honest with himself. The risks are not worth the potential outcome. IF, things don’t turn out as he hopes and the results turn out to have some or all or even worse bad effects perhaps even worse side effects than either of you had been told about, what then? Who has to live with those effects, obviously he will, but what about you, his family, his friends. Who might have to care for him? 20% positive outcome is absolutely ridiculous to even consider for such a high risk surgery. I agree that the doctors may well be pushing your son into having an unrealistic surgery. NO ONE would have such a DANGEROUS and radical surgery as this especially with such poor odds.
Your son is desperate and not thinking clearly, at least in my opinion.
I have had Epilepsy for over 50 yeas and had active Tonic Clonic, Focal Impaired Awareness
(old terminology is “Complex Partial” or even older term “Psychomotor”) and Generalized Absence seizures and numerous Convulsive Status Epilepticus Seizures. I have had over 13,000 Seizures in my 46 years of active Epilepsy. My seizures have FINALLY ceased, why is anyone’s guess but by the grace of God they are gone, at least for now. You know Sarahlou, your sons seizures may also just one day abruptly stop too. No one can predict it or how seizures will be in the future although they continue to try. My advice is to pay them no mind. ABSOLUTELY NO ONE CAN PREDICT WHEN, WHERE, WHY, OR FOR HOW LONG SEIZURES WILL CONTINUE. Doctors at Stanford University told me and my parents I had Intractable Epilepsy, they were proven wrong. Many doctors were wrong that I went to. Doctors are frequently wrong of course don’t think any will ever admit it. My cousin was never told his Diaphragm could be paralyzed during his three heart operations but it was. Now his abdominal organs are in his chest and is on 24/7 oxygen, Unexpected complications are always a possibility.
Your son like I said is desperate and grasping at straws. The odds are to unrealistic to go through such a radical and dangerous procedure. There are other non invasive things to try or at least less invasive things that could be tried first. His doctor has a responsibility to inform him of all other possible treatments. Obviously Anticonvulsant drugs are the primary Epilepsy treatments which are 70% effective but sometimes take years to get the correct dosage and cocktail. VNS (Vagus Nerve Stimulation) is another possible treatment but was not something I chose due to its poor odds (20-55% seizure control) and side effects and the coil around the nerve at that time could not be removed but who knows, it may work for him. Diets, (Ketogenic diet) vitamin therapy has helped some (have his bit D checked) there has also been research on Melatonin for seizure control although I’m not familiar with those studies. Also Marijuana without THC has really helped many especially children. There are NeuoChiropractors too, I personally know one who treated a boy who was having 100 seizures a day, he hasn’t any since his treatment. There are also other implants that can stop seizures before they start and are much less radical. Biofeedback is another alternative treatment I have seen it work, and also not have any affect. Surgery should always only be considered as a very last resort, especially brain surgery. I have known to many people who have had bad surgical outcomes. It is always a risk and that should never be forgotten. I have studied Epilepsy for over a half century and am by far no expert but have seen a lot and have been in contact with people from all over the world. I’ve seen things I wish I hadn’t and heard and read things I h wish I hadn’t as well. One thing though, It’s never as simple and easy as a lot of doctors want you to believe.
Best wishes and may God be with you and bless you both/all.

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God bless you Jake for taking the time to reply in such detail and with such compassion. David already takes a vitamin D supplement and us having his meds looked at again, under a probable two to three week admission to the national centre of excellence girl epilepsy, so we are looking at alternatives. I also have had epilepsy since I was three years old (I'm 54) and was given a very pessimistic prognosis. However…..I am healthy, seizure free (intake my meds), I drive, I work as a full-time Probation officer and have two university degrees. I also, strongly believe, that my son can have a good life, even with his hideous seizures. Thankyou for mentioning the fact that his decision also affects his circle of support, chiefly me. Today feels like a better day; David is going to his voluntary work as a primary school teaching assistant and I'm going to work. The sun is shining too, which always helps in England!

Hello Sarah, How are you and David getting along? Is David still putting surgery on the back burner?
Hope to hear from you…….

@jakedduck1

Hello Sarah, How are you and David getting along? Is David still putting surgery on the back burner?
Hope to hear from you…….

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Good morning Jake, David is doing really well since he and I started to talk with honesty about everything with our family and with each other. Best of all, he has actually gone four whole weeks without a seizure; his longest break in over a year. Because of this, he's much more focused, without the 'hangover' fog that follows frequent seizures. He has decided to defer his decision on surgery until he feels ready; currently we're both in agreement that surgery is a very bad idea indeed for David. I'm angry that the surgeon ever presented this surgery to David as if it was a viable option. I had a good talk with David's consultant, who agreed and is keen to explore other options. VNS is not possible for David. David seems to be truly embracing life, rather than putting things off because of the impending dread of surgery. He's taken on another voluntary job and seems very much happier in himself. Doctors, Surgeons included, are not Gods, just fellow humans; we shouldn't be afraid to question their decisions. I told David that any timescales are his alone; not mine, not the NHS deadlines or targets, just his alone. Thankyou for your support.

@sarahlou

I’m so happy that David isn’t rushing into surgery. And very happy for you as well.
I suppose doctors feel it’s their responsibility to stop patients from having seizures but it shouldn’t be “at any cost” and I don’t believe any surgeon should give a patient which basically amounts to nothing more than false hope and in my opinion and that’s exactly what 20% is by the time you factor in potential side effects. David hasn’t had Epilepsy very long compared to you and I and we were both given a poor prognosis but look at us today, Seizure free, driving, both working (I was but now retired.) Absolutely no one knows if or when David’s Seizures may spontaneously cease.
I have seen and heard to many horror stores that surgeons never told the patient or their families. Those risks were small, but they happened nevertheless. I’m not against Seizure surgery but only after everything else has been tried and the patients condition is very extreme and is the absolute last resort.
May God be with you David and you also Sarahlou.
Blessings, Jake

@jakedduck1

@sarahlou

I’m so happy that David isn’t rushing into surgery. And very happy for you as well.
I suppose doctors feel it’s their responsibility to stop patients from having seizures but it shouldn’t be “at any cost” and I don’t believe any surgeon should give a patient which basically amounts to nothing more than false hope and in my opinion and that’s exactly what 20% is by the time you factor in potential side effects. David hasn’t had Epilepsy very long compared to you and I and we were both given a poor prognosis but look at us today, Seizure free, driving, both working (I was but now retired.) Absolutely no one knows if or when David’s Seizures may spontaneously cease.
I have seen and heard to many horror stores that surgeons never told the patient or their families. Those risks were small, but they happened nevertheless. I’m not against Seizure surgery but only after everything else has been tried and the patients condition is very extreme and is the absolute last resort.
May God be with you David and you also Sarahlou.
Blessings, Jake

Jump to this post

After a truly dreadful night of seizures, a ray of hope came by way of a phone call from David's hospital (The Epilepsy Society, UK) with a date to admit him for 2 -3 weeks to review his meds, under the watchful eye of his overall consultant; a man we trust. David will be admitted on the 5th August. For the first time in far too long, I feel as if I could actually hope.

@sarahlou

I hope you’ll keep us informed of David’s condition/progress/hospitalization.
Just curious, did you ever participate in the Epilepsy society’s forum either for yourself or David? We may have unwittingly know each other back then.
Wishing you both the best.

@jakedduck1

@sarahlou

I’m so happy that David isn’t rushing into surgery. And very happy for you as well.
I suppose doctors feel it’s their responsibility to stop patients from having seizures but it shouldn’t be “at any cost” and I don’t believe any surgeon should give a patient which basically amounts to nothing more than false hope and in my opinion and that’s exactly what 20% is by the time you factor in potential side effects. David hasn’t had Epilepsy very long compared to you and I and we were both given a poor prognosis but look at us today, Seizure free, driving, both working (I was but now retired.) Absolutely no one knows if or when David’s Seizures may spontaneously cease.
I have seen and heard to many horror stores that surgeons never told the patient or their families. Those risks were small, but they happened nevertheless. I’m not against Seizure surgery but only after everything else has been tried and the patients condition is very extreme and is the absolute last resort.
May God be with you David and you also Sarahlou.
Blessings, Jake

Jump to this post

Dear@sarahlou, I do not usually visit this site because I personally have never had seizures. I don't have much to contribute as far as personal experience. I am not a medical practioner, although I have always known friends who did have seizures. Being in Special Education for 18 years, I was always around children who took medication daily for seizures. But while we were on vacation earlier this year, my daughter and I watched a documentary about an extremely low carb diet, a keto diet, actually. The little girl in the documentary greatly reduced the number of seizures she had by adhering to the keto diet. She also had to take much less medication, if any at all. It does not work for everyone. But it has shown so much improvement in so many patients, it might be worth a try. As always, any changes in diet as drastic as that should probably be discussed with one's medical practitioner first. My physician is happy to know how much better I feel on the keto diet. Diabetes Type Two responds very well to the keto diet also. Moods are more level, thinking is clearer. This is my experience, I cannot speak for everyone, obviously. I am so happy to hear that your son is volunteering and staying active. You and your family will be in my thoughts and prayers. Please keep us posted about your son and how he is doing.

@jakedduck1

@sarahlou

I hope you’ll keep us informed of David’s condition/progress/hospitalization.
Just curious, did you ever participate in the Epilepsy society’s forum either for yourself or David? We may have unwittingly know each other back then.
Wishing you both the best.

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Good morning Jaje, yes, David and I both participated in the Epilepsy Society forum. I log onto that site as Wendygrunch ( a silly pseudonym). Just to update ypu all; David has been at the Epilepsy society for a week so far, having his meds overhauled under close supervision. He's actually quite content there. There are a dozen or so inpatients, mostly younger people, so David is in the rare position of being the norm, not the exception, as a young man with yet to be control seizures. There is a large day room where most of the patients spend their days together; playing pool, watching films, eating together as a community etc. His meds are being changed quite rapidly, which obviously couldn't be safely done at home. I'm taking my mother to visit him on Monday. The only drawback for me is that it is a 2 and a half hour drive, but I think that it's actually been good for David to have some relative independence.

Wasn’t sure if you updated since July… was laser ablation or RNS considered?

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