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Surgery Side Effects and Recovery

I am currently looking into LTL surgery. I am on very heavy medication and have been told not to have the surgery to come off the medication but only to consider that my seizures may be 'cured'. I mainly suffer from complex partial seizures. It is a tough decision to make, live with the medication or the seizures. Can anyone tell me what other side effects they had from surgery? What was the recovery like? Do you feel like a different person after the surgery? Did anyone lose speech ability? What is it like losing short term memory? Sorry, intrusive (and many!) questions - I just can't seem to find answers anywhere. Thanks:) Sam

Comments

Hi AussieSam, I had left

Hi AussieSam,
I had left temporal lobe surgery in 2006. It was a huge decision, I had lived with epilepsy for 44 yrs. My surgeon gave me a 70% chance of cure, 20% chance of reduced siezures and 10% chance of no change or possible problems. No doctor had ever used the word cure in my case before. After a lot of soul searching I had the surgery and now 13 months later I have not had a siezure, and will commence reducing medications next month.
I had left 5 cms of left temporal lobe and hippocampus removed.
When I had the surgery, morphine was used as an anasthetic, when you wake from the surgery ,there is minimal pain. I was in hospital 1 week after surgery, and spent a further 6 weeks at home recovering, before returning to work. I had the surgery in Westmead private hospital, so much better and more pleasant than the public hospital where I had my intial video EEG .
For the first couple of months after returning home I had bouts where I felt unsteady on my feet, but this passes .
I experieced some Tip of the tongue problems- remembering names, peoplem I was talking to etc- this too has improved significantly with time.there is the possibility of some periphial vision loss. In most cases this returns to normal-normal being the state your eyes were before surgery. I still have some slight double vision but I cannot be sure whether it attributed to the surgery or not as I did not have a field vision test prior my surgery. i would reccomend a field vision test ,so you will at least have a guide as to how your eyes were before surgery.
After surgery I found bright lights harsh on my eyes and had to shade them. I did not get ant servere headaches until I went home , I managed these though with Neurofin Plus, worked real well.
After the surgery ,for about 2 - 3 months I was emotional in the sense I was easily brought to tears.
I have no speech problems . My case is slightly different to some though because my right hand side of brain had taken over the functions normally carried out by the left hand side. I had a test called an fMRI which gives similar information to that of the invasive wada test.
After surgery I was instructed not to get an prescription glasses changed for at least 6 months whilst my eyes returned to normal, it can take longer.
It is great to know,once you've had surgery, that you can do things safely that most people take for granted.
Good Luck in you tests.
Aussie2006

Re: Hi AussieSam, I had left

Thanks for your response and congrats on it being such a success.
I haven't looked into Sydney at all but maybe I should. I am just looking into Perth and possibly Melbourne (Austin Health Centre), it is so hard as there is not a lot of info on neurosurgeons out there.
I think I am most scared about losing memory and word recall ability.

I am due to have the functional MRI soon as well, so am not sure if I will be in the same boat as you. They don't seem to be as big on the WADA test in Oz.

I was told not to even think about reducing my meds post op for a few years and only very gradually (with the possibility of being on them for life) which I thought really odd, but at least I have seen there is hope!

Did you look at options other than Sydney or just the one surgeon? I was told the surgery would take about 1 hour?

Thanks!

aussiesam

Re: Re: Hi AussieSam, I had left

Hi AussieSam, I live in Melbourne (Vic) and I underwent the brain surgery six years ago. I do suffer complex partial seizures and on 2001 I decided to undergo the surgery. My epileptologist is Prof. Mark Cook, and the neurosurgeon is Prof. Michael Murphy. Believe me, they are really good and I must say that I didn't suffer any pain when I underwent the operation. However, the operation didn't work properly but this doesn't mean that it won't work for you. Go ahead, undergo the operation and I'm sure that it will at least help you with your life. The operation doesn't take only 1 hour, it takes longer. I had local anaesthetic and I was awake during part of my operation.
There is hope because even if the operation didn't work for me but now it seems that I do have a better life and I seem not to have so many problems that I had before the operation. If you want to get in contact with me, I will be glad to help you and to 'give you a hand' to understand about the operation.
Good-luck!
My email address: edy11@westnet.com.au

Edy

Hi AussieSam, I am told that

Hi AussieSam, I am told that from the time they came to collect me for surgery to the time I was in intensive care was 5 and half hours.
I believe that the surgery in Melbourne is good, Thats where Wally Lewis ( footballer) has recently had his surgery and he comes from Queensland. i did not search for any other surgeons I was guided by my two Nuerologists who were doing the evaluation for my surgery.
If you can, get the surgery done in a private hospital, the overall atmosphere is quieter and more calm which is good when you are recovering. I found the attention and food at Westmead private very good as well. My surgeon was Dr Mark Dexter he was very very good and very reassuring, he told me that the brain surgery is less painful than having an appendix taken out. Get some private health insurance if you can. Ask your surgeon if he has Gap cover insurance. This means that any amount on his account that is not paid by medicare and your private health fund will be covered by gap cover. I am in HCF and only had to pay $100au for my hospital accomadation, HCF paid the rest. please stay in touch, my email address is wren3005@hotmail.com
Initially, I thought that there was no way I was going to let anyone cut my head open,and take a peice out, but I kept an open mind and told all the various doctors and specialists ,when they asked me,that I would make up mind about having surgery when I had been given all the results of my tests and how safe the surgery would be for me.
Try it for yourself, it helped me.
Wishing you all the best in your decisions. It is a big decision to make ,but is also a life altering one as well.
Regards
Aussie2006

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