Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
My 5yr old daughter is having a functional hemispherectomy on 1/26. Any advice?
Tue, 01/10/2006 - 19:39Topic: Surgery and Devices
Hey all! This is my first time on here. I wish that I had made this venture a while back. My five year old daughter Blakely, is having a right side, functional hemispherectomy on Jan. 26. at the Cleveland Clinic. I do know a couple of other children that had this done, but was wondering if any one else had and advice as to what we need to expect after surgery for her recovery. I am nervous about the first bit of time after the procedure. We will not be dealing with any new impairments because she is already left-side hemi-paresis due to a stroke she had during my first trimester of pregnancy. The doctors have told us though that she will suffer greater weakness in her affected side, but with intensive therapy, within 6mths. she should be back to her capacity that she is now. I guess I am wondering about what the incision will look like, what do I need to watch for, and how to take care of her after this. The worst surgery we have been through with our girls is tonsils and adnoids! Thanks for a response!
Comments
Re: Re: My 5yr old daughter is having a functional hemispherecto
Submitted by sonya walden on Wed, 2006-01-11 - 16:56
Sonya Walden
Ginny:
Thank you so much for your encouraging reply. You said it all with the words...bring your daughter back! That is what I cannot wait for. My friend son that had the operation two years ago said that during the beginning of healing that we might be very mixed with emotions because of the shape she will be in, but she said even in the yuckiness of it, she saw the brightness in little ways that was changed about him and it made it all right. I am excited to be introduce to the other daughter that I have not met yet! That is one way to look at it.
Sonya
Re: My 5yr old daughter is having a functional hemispherectomy
Submitted by txrhb1 on Wed, 2006-01-11 - 15:39
Hi Sonya,
I don't have any experience to share with you, but I am wishing the very best for you and your daughter. Know that you are not alone, and many of us here at this site will be keeping you in our prayers.
((( hugs ))),
Barbie
***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo
Re: My 5yr old daughter is having a functional hemispherectomy
Submitted by kayakmom on Wed, 2006-01-11 - 09:48
I am so sorry your little girl, and you, have been through so much! No experience, but I know several at www.braintalk.org have been through hemispherectomies and are years past. They might have sound advice for you. Such a huge surgery to even think about, I am sure, but it can bring back your little girl. Once seizures can be stopped with the surgery, she find amazing recovery. I hope all goes very well for her and the weakness will not be bad with therapy!! Hang in there. GInny