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Is it best to shave your entire head or just the incision for surgery?
Mon, 02/07/2011 - 13:47Comments
Re: Is it best to shave your entire head?
Submitted by jyhprice on Thu, 2011-02-10 - 01:24
Thank you so much for that advice. If you think of anymore like the car ride, let me know! The more info, the better is my opinion. I'm trying to prepare myself as much as I can. Mine is also on the left and they have to really examine the EEG's when I have my seizures because they are not always obvious so I hope they are not deeply located like yours are. I have a bad memory and problem coming up with words already and my doctor told me that is a good thing because it won't be so traumatic after the surgery. They will decide what all they are going to do on my Mar 13th week stay. I just spent a week there a month ago and had 11 seizures. That may not sound bad and not as bad as others, but I'm on 3 different seizure meds and can't do any movement without having some sort of aura. I have tons of questions but I'm sure I will be able to get answers from the doctors. It's just the small things, like the car ride, that I'd really like to know about. Maybe showering, eating, moving around, things like that that the doctors won't tell you. Elevators always cause me to have seizures so if that's going to be worse, I'd like to know, lol.
I'm sorry they couldn't fix you, but at least now you know for sure. You're right, CC is the best. They have saved my life with finally figuring out these were seizures. It took 5 years to get a diagnosis from other hospitals and nobody could figure it out until I went to Cleveland. :)
Yvonne
Thank you so much for that advice. If you think of anymore like the car ride, let me know! The more info, the better is my opinion. I'm trying to prepare myself as much as I can. Mine is also on the left and they have to really examine the EEG's when I have my seizures because they are not always obvious so I hope they are not deeply located like yours are. I have a bad memory and problem coming up with words already and my doctor told me that is a good thing because it won't be so traumatic after the surgery. They will decide what all they are going to do on my Mar 13th week stay. I just spent a week there a month ago and had 11 seizures. That may not sound bad and not as bad as others, but I'm on 3 different seizure meds and can't do any movement without having some sort of aura. I have tons of questions but I'm sure I will be able to get answers from the doctors. It's just the small things, like the car ride, that I'd really like to know about. Maybe showering, eating, moving around, things like that that the doctors won't tell you. Elevators always cause me to have seizures so if that's going to be worse, I'd like to know, lol.
I'm sorry they couldn't fix you, but at least now you know for sure. You're right, CC is the best. They have saved my life with finally figuring out these were seizures. It took 5 years to get a diagnosis from other hospitals and nobody could figure it out until I went to Cleveland. :)
Yvonne
Re: Is it best to shave your entire head?
Submitted by Tiffany K on Thu, 2011-02-10 - 11:54
Hi Yvonne,
I was the same way, I saw a few neurologists closer to home before going to CC and they couldn't figure out where the seizures were coming from and wouldn't even diagnose it as epilepsy for a few years. I think they gave up, they even sent me to a psychologist and told me the "it was all in my head" I complied, saw a psychologist and they ended up telling me that "I was perfectly sain." So that's when I sought out CC, after being there for just a few days the the doctors pinpointed the exact area the seizures were coming from and assured me that it WAS epilepsy and believe it or not I wasn't nuts and I was not making up the seizures!
You're right it is the small things you don't really think to ask about or prepare for, I think the main thin I was thinking was "somebody is going to cut into my skull and play with my brain" that kinda takes over all your thoughts! A few other things, showering... just use baby shampoo for a while and try not to get the incision too wet until the stitches and staples come out. Eating is pretty normal, for the first couple of weeks you'll pretty much be sleeping quite a bit because you'll most likely be on some heavy pain meds, best thing to do is take that time, relax, and let your body heal. Keep your self away from stress, because it actually hurts. any stress or physical exertion that gets your blood pumping, you can really feel it pulsing through your head where the incisions are. You'll also have to keep icing the incision spot for a week or two to keep the swelling minimal. Another thing, I think you said in an earlier post that you had children? if they're small children I'd find someone to take care of them away from your house for at least a week or to after surgery.
I don't have children, just a hubby that works 14 hours a day so for a couple of weeks after my surgery my sister would come over and stay with me for a few hours each day, that's when I'd shower and get off the couch, walk around the house to get some exercise. Occasionally she'd bring her 1 yr old son, not that I don't absolutely love my nephew but a baby was the LAST thing i wanted to hear at that time. Remember cutting into the skull gives you a BIG headache that lasts for about a month. If you are alone with your your kids you probably won't have the strength to pick them up if you need to or play with them. Actually, If I remember correctly I was told not to lift over 10 pounds for 6 weeks. So something else to think about if you do have small children. But also keep in mind I was stuck in the hospital for close to a month, if you have a surgery that goes the way it's supposed to you may only be in there for a week. Being stuck in bed ruins a lot of your strength.
I'll definitely keep you posted on any of the other small things I think of. What are you going in in March for? Is the battery of tests or VEEG? I would really like to keep in touch with you, if you'd like to talk more privately you can e-mail me at tifwolff@yahoo.com.
Talk to you later,
Tiffany
Hi Yvonne,
I was the same way, I saw a few neurologists closer to home before going to CC and they couldn't figure out where the seizures were coming from and wouldn't even diagnose it as epilepsy for a few years. I think they gave up, they even sent me to a psychologist and told me the "it was all in my head" I complied, saw a psychologist and they ended up telling me that "I was perfectly sain." So that's when I sought out CC, after being there for just a few days the the doctors pinpointed the exact area the seizures were coming from and assured me that it WAS epilepsy and believe it or not I wasn't nuts and I was not making up the seizures!
You're right it is the small things you don't really think to ask about or prepare for, I think the main thin I was thinking was "somebody is going to cut into my skull and play with my brain" that kinda takes over all your thoughts! A few other things, showering... just use baby shampoo for a while and try not to get the incision too wet until the stitches and staples come out. Eating is pretty normal, for the first couple of weeks you'll pretty much be sleeping quite a bit because you'll most likely be on some heavy pain meds, best thing to do is take that time, relax, and let your body heal. Keep your self away from stress, because it actually hurts. any stress or physical exertion that gets your blood pumping, you can really feel it pulsing through your head where the incisions are. You'll also have to keep icing the incision spot for a week or two to keep the swelling minimal. Another thing, I think you said in an earlier post that you had children? if they're small children I'd find someone to take care of them away from your house for at least a week or to after surgery.
I don't have children, just a hubby that works 14 hours a day so for a couple of weeks after my surgery my sister would come over and stay with me for a few hours each day, that's when I'd shower and get off the couch, walk around the house to get some exercise. Occasionally she'd bring her 1 yr old son, not that I don't absolutely love my nephew but a baby was the LAST thing i wanted to hear at that time. Remember cutting into the skull gives you a BIG headache that lasts for about a month. If you are alone with your your kids you probably won't have the strength to pick them up if you need to or play with them. Actually, If I remember correctly I was told not to lift over 10 pounds for 6 weeks. So something else to think about if you do have small children. But also keep in mind I was stuck in the hospital for close to a month, if you have a surgery that goes the way it's supposed to you may only be in there for a week. Being stuck in bed ruins a lot of your strength.
I'll definitely keep you posted on any of the other small things I think of. What are you going in in March for? Is the battery of tests or VEEG? I would really like to keep in touch with you, if you'd like to talk more privately you can e-mail me at tifwolff@yahoo.com.
Talk to you later,
Tiffany
Re: Is it best to shave your entire head?
Submitted by Tiffany K on Wed, 2011-02-09 - 18:42
I'm glad you appreciated the info. I hope it helps and lets you better understand what will be happening. Also another thing I LOVE about Cleveland Clinic is that you can ask them any question, I have had previous doctors that looked at me like I was a moron asking simple questions. I hated that, but at Cleveland Clinic they will explain and explain until you're completely comfortable with and understand the answer, I've found that with everyone there from the CNAs to the surgeons.
To answer your question, my surgery was on the left. They were actually never able to resect anything though. I had surgery #1 to place EEG sensors directly on my brain to find the exact spot of the focus. Then about a 10 days later surgery #2 to place more sensors on the brain. That finally found the focus, but it was decided that it was too embedded into the language center of my brain to safely resect anything. Then surgery #3 about 10 days after that to take all the sensors out, and sent home. But my surgeon wasn't done... he had 1 more idea. I came back to Cleveland 6 weeks later and he literally drilled 10 holes into my already VERY sore head to place EEG sensors further in to see if there was any way he could get around the language center to resect. We left those in and monitored for about 12 days, decided there was no way of getting around it, went back to surgery to take them out, patched me up and went back home with no hair, a sliced up head, and still had epilepsy! I absolutely do not blame the doctors for not being able to fix it, basically if the doctors there couldn't fix it no one can. Although it was a very painful and traumatic experience I'm still glad I did it and do not regret it at all, otherwise I'd never know if surgery could fix me!
My Neurosurgeon is Dr. Gonzales. He's such a nice man, very attentive and doesn't have that "surgeon" persona about him. He also has a very great staff.
I so have small speech and memory problems but I contribute that mainly to the constant seizures and the wild ride of medicine I've been on before I went to Cleveland Clinic.
Just a thought on the shaving of the hair... I definitely want you to do what ever you're comfortable with but you may want to consider just letting them shave it after your in surgery and out. You mentioned you have long hair, so did I; I didn't think it would be so traumatic the first time I saw it after surgery but it was pretty hard, and I didn't even see it for the 1st time until 21 days after my first surgery. By that time I had more important things to think about like pain management and what I am going to do next to stop the seizures. This whole time is a pretty big emotional ride. Just think of PMS times 10! Maybe not seeing all your hair gone before could save you an upsetting day. But like I said please do whatever you think is best for you!
And another quick word of advice... after surgery riding in a car HURTS! Every single bump and swerve and turn makes your head feel like it's going to explode. So make sure you have them drug you as much as possible before you leave the hospital and whoever you have driving you drives fast and smooth! My mom drove me home the first time, the first couple of hours were okay because I was still full of very strong painkillers... then they wore off. She thought that stopping every 20 minutes was helping me... IT WASN'T! I finally told her to get in the car drive as fast as she can and just get me home! So something else to prepare for!
I really hope I'm not scaring you with all this but like you said you want to get as much info as you can, unfortunately a lot of it isn't pleasant! But it is very smart of you to gather all the knowledge you can so you go in knowing what to expect. And remember, even though the procedure may not be pleasant it is hopefully giving you the chance to live a pleasant seizure-free life! Just remember to keep reminding yourself of that! Keep in touch and let me know if have any more questions!
Tiffany K.
I'm glad you appreciated the info. I hope it helps and lets you better understand what will be happening. Also another thing I LOVE about Cleveland Clinic is that you can ask them any question, I have had previous doctors that looked at me like I was a moron asking simple questions. I hated that, but at Cleveland Clinic they will explain and explain until you're completely comfortable with and understand the answer, I've found that with everyone there from the CNAs to the surgeons.
To answer your question, my surgery was on the left. They were actually never able to resect anything though. I had surgery #1 to place EEG sensors directly on my brain to find the exact spot of the focus. Then about a 10 days later surgery #2 to place more sensors on the brain. That finally found the focus, but it was decided that it was too embedded into the language center of my brain to safely resect anything. Then surgery #3 about 10 days after that to take all the sensors out, and sent home. But my surgeon wasn't done... he had 1 more idea. I came back to Cleveland 6 weeks later and he literally drilled 10 holes into my already VERY sore head to place EEG sensors further in to see if there was any way he could get around the language center to resect. We left those in and monitored for about 12 days, decided there was no way of getting around it, went back to surgery to take them out, patched me up and went back home with no hair, a sliced up head, and still had epilepsy! I absolutely do not blame the doctors for not being able to fix it, basically if the doctors there couldn't fix it no one can. Although it was a very painful and traumatic experience I'm still glad I did it and do not regret it at all, otherwise I'd never know if surgery could fix me!
My Neurosurgeon is Dr. Gonzales. He's such a nice man, very attentive and doesn't have that "surgeon" persona about him. He also has a very great staff.
I so have small speech and memory problems but I contribute that mainly to the constant seizures and the wild ride of medicine I've been on before I went to Cleveland Clinic.
Just a thought on the shaving of the hair... I definitely want you to do what ever you're comfortable with but you may want to consider just letting them shave it after your in surgery and out. You mentioned you have long hair, so did I; I didn't think it would be so traumatic the first time I saw it after surgery but it was pretty hard, and I didn't even see it for the 1st time until 21 days after my first surgery. By that time I had more important things to think about like pain management and what I am going to do next to stop the seizures. This whole time is a pretty big emotional ride. Just think of PMS times 10! Maybe not seeing all your hair gone before could save you an upsetting day. But like I said please do whatever you think is best for you!
And another quick word of advice... after surgery riding in a car HURTS! Every single bump and swerve and turn makes your head feel like it's going to explode. So make sure you have them drug you as much as possible before you leave the hospital and whoever you have driving you drives fast and smooth! My mom drove me home the first time, the first couple of hours were okay because I was still full of very strong painkillers... then they wore off. She thought that stopping every 20 minutes was helping me... IT WASN'T! I finally told her to get in the car drive as fast as she can and just get me home! So something else to prepare for!
I really hope I'm not scaring you with all this but like you said you want to get as much info as you can, unfortunately a lot of it isn't pleasant! But it is very smart of you to gather all the knowledge you can so you go in knowing what to expect. And remember, even though the procedure may not be pleasant it is hopefully giving you the chance to live a pleasant seizure-free life! Just remember to keep reminding yourself of that! Keep in touch and let me know if have any more questions!
Tiffany K.