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Second surgery for my 28 year old son. Advice needed please.
Epilepsy & Seizures | Last Active: Aug 12, 2018 | Replies (17)Comment receiving replies
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.
Replies to "Hi @sarahlou, welcome to Connect. First I'd like to introduce you to @patrassi. She, too, is..."
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.
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?
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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...