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Questions on the left temporal lobectomy

I am scheduled to have my surgery on the 17th of April. At this point I am trying to get my affairs in order. I have a couple of questions for everyone. My first questions is how many of those who had surgery had to have their heads shaved completely or chose to do it? Secondly, How long was the recovery time at home after you arrived the reason I ask this is we are wondering if my dad should take a leave of absence to come up and stay with me and help out because I have a MIL and two teenage boys that I have to take care of? Then my husband had made plans to renewal on vows at the end of September is all goes well do you think that I will be up to doing that? I would appreciate everyones opinion thanks!!!! Shelly Maire

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Re: Questions on the left temporal lobectomy

I'll be having a left temporal lobectomy in June, 2008 and I'd love to communicate with anyone who has gone through that. 

How difficult was the surgery?

Was it succesful?

What did they do during your surgery? 

How long were you in the hospital?

How much of your head was shaved?

How long did it take for you to be able to return to work (or whatever you normally do)?

How successful was your surgery?

Are you still taking anti-seizure medication(s)?

What were the effect(s) . . . how is your speech and how is your memory, in compare to how it was before your surgery?

Any suggestions, thoughts, ideas? 

If you had the choice again, now that you know how it went for  you; would you do it again?

I'd really like to hear your thoughts/opinions.

 

Re: Questions on the left temporal lobectomy

My daughter is almost 6 weeks post Left temporal lobe surgery. She is 26, had epi for 10 yrs we know of. She has shoulder length hair. They only shaved about 1 1/2" of hair, right along her hair line, starting at the middle part in the shape of an inverted "C" to just below her ear lobe. I know it sounds large, but honestly, you CANNOT see the incision now. She parts her hair on the side, and it covers the incision. She has not had a seizure since the surgery. She feels GOOD now. She's going back to work in about 2 week, so she'll have been off about 8-9 weeks. She was only in the hospital 3 days ( 1 in ICU, the rest in reg. room). Stay on your pain meds as they prescribe. Don't let the pain get ahead of the meds, but she only was taking Percocet. She only took them for about a week after surgery, then to reg. Tylenol for pain. Our Neuro says she will be on the same dosage of meds for 6 months. (Topamax and Lyrica) then will slowly start to wean off her least tolerated med till we get to a maintenance dose of one of them. She has only had a few minor "word finding" issues, but she knew us right away after surgery, knew the date, year, etc. She had 3 weeks of physical and speech therapy. Her back and upper thighs hurt more than her head, believe it or not. Also, 1 thing to note. Getting her bowels to move after surgery was tough too. It took awhile to get things "moving" again. Her memory is not affected at all. She remembers as much as she did before.

Right now she is believing that NO MORE SEIZURES are going to be a way of life. She always felt "tingly" in her neck (her words) and has not had any of that at all since her surgery. Right now, we would do it over again in a heart beat. It is a chance to have the best quality of life for her. Our surgeon put it this way " So many neurological problems have NO OPTIONS to correct or improve your life. Being a candidate is a CHANCE you can take to live your life to the fullest"

It was scary. I'm so proud of her that she decided this on her own, with our blessings. I took off 2 weeks from work to stay with her, but she was up and around within a week or so on her own.

Good luck! I hope and pray it works for you. Get as many friends and family to pray. It works!

Re: Questions on the left temporal lobectomy

My daughter is almost 6 weeks post Left temporal lobe surgery. She is 26, had epi for 10 yrs we know of. She has shoulder length hair. They only shaved about 1 1/2" of hair, right along her hair line, starting at the middle part in the shape of an inverted "C" to just below her ear lobe. I know it sounds large, but honestly, you CANNOT see the incision now. She parts her hair on the side, and it covers the incision. She has not had a seizure since the surgery. She feels GOOD now. She's going back to work in about 2 week, so she'll have been off about 8-9 weeks. She was only in the hospital 3 days ( 1 in ICU, the rest in reg. room). Stay on your pain meds as they prescribe. Don't let the pain get ahead of the meds, but she only was taking Percocet. She only took them for about a week after surgery, then to reg. Tylenol for pain. Our Neuro says she will be on the same dosage of meds for 6 months. (Topamax and Lyrica) then will slowly start to wean off her least tolerated med till we get to a maintenance dose of one of them. She has only had a few minor "word finding" issues, but she knew us right away after surgery, knew the date, year, etc. She had 3 weeks of physical and speech therapy. Her back and upper thighs hurt more than her head, believe it or not. Also, 1 thing to note. Getting her bowels to move after surgery was tough too. It took awhile to get things "moving" again. Her memory is not affected at all. She remembers as much as she did before.

Right now she is believing that NO MORE SEIZURES are going to be a way of life. She always felt "tingly" in her neck (her words) and has not had any of that at all since her surgery. Right now, we would do it over again in a heart beat. It is a chance to have the best quality of life for her. Our surgeon put it this way " So many neurological problems have NO OPTIONS to correct or improve your life. Being a candidate is a CHANCE you can take to live your life to the fullest"

It was scary. I'm so proud of her that she decided this on her own, with our blessings. I took off 2 weeks from work to stay with her, but she was up and around within a week or so on her own.

Good luck! I hope and pray it works for you. Get as many friends and family to pray. It works!

Re: Questions on the left temporal lobectomy

Hi Shelly

I had the operation 3 months ago. I didnt have to shave my whole head,they only shaved a patch,but my surgeon was good about it and tried to make it so that the rest of my hair would cover most of the baldness. I was in hosp for only a week,but it took me until now to feel good. I would say u would def b feeling fine 2 renew your vows by Sept,but maybe taking care of your boys and MIL will b a struggle.I had my husband and both my parents looking after me for 2 months as I couldnt do anything without getting exhausted.

Hope that helps,Kirra

Re: Re: Questions on the left temporal lobectomy

Thank you for your help if you don't mind me asking you how old are you? I plan on having my dad coming and staying me with if all goes well to help out. Do you have short hair or long hair? How big of a patch of hair did they have to shave? I am sorry if I am being a pain but I am deciding what to do about my hair I have most of my questions about the surgery answered but now I am thinking about all of the small things afterwards. hahahaha. Anything to worry about in between. lol

Shelly

Re: Re: Re: Questions on the left temporal lobectomy

Yeah I went thru the same panic about my hair.Lol.

Im 23. My hair's prob medium length.A bit past my shoulders.But my hair's dark,so when the hair first started growing back it all kind of blended in and u couldnt c the baldness that bad.It might b diff if u have diff colour hair.Now that its getting longer I have to clip most of it down coz it stands out like Stegasaurus!

They shaved a fair bit for me,the scar was over 5 inches.I never actually looked at what they had done,just felt it-and I could put my hand (flat out) on it twice.But once they took the staples out I could put my hair back in a low pony tail and it covered almost all of the baldness. :) I also found it helped to part my hair on the opposite side to the scar,and then the long hair covered it a bit.

I hope Im helping and not freaking u out :p

Kirra

Re: Re: Re: Re: Questions on the left temporal lobectomy

Hi, I had surgery for left temporal lobe March 2006, age at time of surgery 44. I was in hospital for 1 week after surgery and at home a further 6 weeks before returning to work. I only had small patches shaved on my head, but they offered to shave my entire head if I wanted them to. It is almost a year since surgery and if you saw me you would not know that I had scar from my left ear to front right hand side of forehead. My hair grew over scar quite quickly.
You may wish to re style your hair or wear it shorter until it gets some length back.

Re: Re: Re: Re: Re: Questions on the left temporal lobectomy

I had left temporal lobectomy in 1992 and 1994 (age 29 and 31).
The first time, I was back to work in less than a month, wearing bandanas and scarves to cover the patch that had been shaved.
The second time, I had my hairdresser give me a very short haircut 2 weeks post op, (basically a buzz cut) and I rarely wore any head cover. I work in healthcare, so having others see the scar wasn't a huge barrier for me or them.
I believe the scar was covered within four months.

Re: Re: Re: Re: Re: Questions on the left temporal lobectomy

Thanks aussie, I think that is more what I was curious about then anything was were the scare was going to be.

Michelle

Re: Questions on the left temporal lobectomy

Hi! It has been eight years this April since I had my surgery. I had petite mal seizures my whole life. In '99, I was 25 years old when I had it done. The doctor only shaved a small section of my hair, but it was up to me. My hair was about shoulder length at that point. I had two kids back then (now I have four) and they stayed on my parents farm for a month. My sister-in-law stayed with me the first week I was home and then I took care of myself for a few weeks before the kids came home. My husband was always there, too, just working in construction. Things should be fine by September. My surgery was in April, too, and I was camping by the beginning of July. Just to let you know....I have never had another seizure or even a hint of one since that surgery. I've been off of meds since early in '02 and now epilepsy is just a part of mny past. I actually have pictures of my brain that the doctors took before and after they removed the scar tissue that caused the seizures. My kids look at that and find it fascinating and then they use that for show and tell at school! I pray that all goes well with you!

Re: Re: Questions on the left temporal lobectomy

Hi Tammy thanks for the information I really appreciate it if you don't mind me asking how old were your kids at the time? When you say that they only shaved a small portion of hair do you have any idea of the size of the incision area? In addition you mentioned about pictures is there anyways that I could get you to email them to me so that I could see what exactly they are going to be doing. Do you have any of the incision itself. How long did you have to wait before you could wait to wash your hair? You can email me from the site I would appreciate it alot thanks a bunch.

Re: Re: Re: Questions on the left temporal lobectomy

Hi Shelly! My kids were 3 1/2 and almost 2. They are now 11 and 9 and only the oldest one can remember a bit about that month. I;d be happy to email you those pictures, but I'm not sure how to attatch them when I email you off this website...You were asking aobut the amount of hair that they shaved off. If you want to, I can also email you a picture that my husband took of me a day after the surgery that shows my staples and how much hair was shaved off. I'll admit that it is not the nicest picture of me, but it gives you a good idea how much they shaved! It will also show the shape of the incision. i don't remember how long I waited bafore washing my hair. I remember showering that week in the hospital, but I din't wash my hair until I was home. I do remember that it wasn't fun to wash and dry it the first few times. My husband tried towel drying it as gently as possible, but it still hurt alot. Anyway, let me know how to send you those pictures if you are still interested! My thought and prayers are with you!! Tammy.

Yeah I would really love to

Yeah I would really love to see the pictures!!! But you can't attach them to the email on the site. You can go in and create a blog and attach the pictures there or you can go in and send me an email with you email address to me and I will send you mine back to you so that you can send me the pictures. Just let me know what you want to do. Thanks a lot

Re: Questions on the left temporal lobectomy

First of all I want to wish you the best of luck, and that I will keep you in my thoughts and prayers.

I had my left temporal lobe removed June 11, 1997 at the age of 17. For some odd strange reason, I was only in the hospital for 2 nights after the surgery.

As far as the hair goes, lets just say my high school gave me the privilege of wearing a hat inside if needed. Where they shaved my head clearly showed, since I was a boy and had short hair. The good news is by the time school started, my hair was pretty much back to its normal length.

For the recovery rate at home, give yourself plenty of time. Do not push yourself. Your brain is recovering and needs the rest. Just cause you are no longer in the hospital doesn't mean that you can go outside and do some yard work. The doctor will give you a better answer for that question. However, for the first week take it very very easy. The second week, depending on how you are doing, start pushing yourself at a slow pace. After a couple of days increase it a tiny bit more, and so on, if nothing bad happens. If something bad does happen, stop what ever you are doing and contact your dr. Also, make sure you have somebody around you 24/7, especially for the first 3-4 weeks to help and monitor you in case if any emergency is needed.

Like many others I am pretty sure you can still keep the September plans you have. Just be a little cautious.

You may have some high and low moments, but do not give up. Keep your head high and think positively. The more people you have around helping you, the easier it will be.

Finally, give yourself a pat on the back. You are doing a great thing. If the doctors didn't think the surgery would help you, that would not have scheduled you for it. Always have faith in yourself.

Congrads, and best of luck. I know you can do it!!!!!!!!!!!!

Composer25

Re: Questions on the left temporal lobectomy

"Changing the misconceptions society has about epilepsy,
by educating one person at a time"....Lisa-Marie Kinsman

Author of "Free at Last, My Lifetime Battle to Overcome Epilepsy".

Hi Shelly,

I had left temporal lobectomy back in December of 1994 and have been completely seizure free ever since. I don't think your dad needs to take a leave of absence from work. One very important thing you should remember when you get home from surgery...DO NOT do any bending over or heavy lifting for at least 6-8 weeks. This is crucial. I was told that if I dropped anything, to let someone else pick it up for me. The reason I was given to not do these two things was because it could cause leakage in the incision as well as leakage of fluids into my brain. This is no joke. Take it as easy as you possibly can. Remember the old saying "good things come to those who wait"? It is so worth the wait, it was in my case anyway. Be patient and take it easy as much as you can. Before you go for surgery, buy yourself a few good books to read, some crossword puzzles to work on, jigsaw puzzles, some sort of crafts....anything to keep yourself busy.

Lisa-Marie

Re: Questions on the left temporal lobectomy

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