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Experiences in surgery recovery
Sat, 07/20/2013 - 14:39Calling to all experts, i.e doctor, nurses, and patients who are experienced in or having experiences in handling post-epilepsy surgery / recovery issues.
I was born with cerebral palsy and diagnosed with epilepsy at the age of 9.
Two years ago in July, I underwent left temporal lobe resection. I have no more seizures, but since then, I have been living with excruciatingly painful headache, pressure, heat (dry and humid alike), and noises all coming from my head 24/7.
Can anybody give a precise answer of how long these conditions will completely go away?
Judy
Comments
Re: Experiences in surgery recovery
Submitted by GKhs4632340 on Sun, 2013-07-21 - 18:09
GG,
I am still on the same medications and dosing as prior to surgery, i.e. 3000mg of Keppra and 200mg of Vimpat. My doctors haven't decided to decrease the dosing. Prior to surgery, I have tried and failed 10 medications, including Keppra and Vimpat.
Where did you have surgery? I had mine in Los Angeles. How often do you experience headache and what number (between 9 and 10 on the pain scale or higher) do you experience it? Does your headache come from the site (and side) of surgery, both hemispheres, always come from the same place, pops up from all over the place without a traceable pattern, and/or shifts from one place to another? What types of pain do you have? How long do they last? Besides pain, do you experience other sensations, e.g. pressure and heat coming from within? Are you still on prescription and/or over-the-counter pain killers two years after surgery? And how often do you take them? And finally, what did your doctor tell you about your prognosis?
JC
GG,
I am still on the same medications and dosing as prior to surgery, i.e. 3000mg of Keppra and 200mg of Vimpat. My doctors haven't decided to decrease the dosing. Prior to surgery, I have tried and failed 10 medications, including Keppra and Vimpat.
Where did you have surgery? I had mine in Los Angeles. How often do you experience headache and what number (between 9 and 10 on the pain scale or higher) do you experience it? Does your headache come from the site (and side) of surgery, both hemispheres, always come from the same place, pops up from all over the place without a traceable pattern, and/or shifts from one place to another? What types of pain do you have? How long do they last? Besides pain, do you experience other sensations, e.g. pressure and heat coming from within? Are you still on prescription and/or over-the-counter pain killers two years after surgery? And how often do you take them? And finally, what did your doctor tell you about your prognosis?
JC
Re: Experiences in surgery recovery
Submitted by GodivaGirl on Mon, 2013-07-22 - 22:04
Hi JC
My surgery was done in London, Ontario. Headaches are quite frequent - average 3 days a week at least. Typically if I wake up with one, it lasts most of the day. Just dull and annoying, but I work through them so on a pain scale well somewhere around 5. Recently my occupational therapists suggested wearing sunglasses indoors and outdoors and that seems to be helping to cut back on the headaches I get. When pain gets really intense if I'm at work I'll take Motrin, at home I just turn out all my lights, put an ice mask on my eyes and sleep it off. Other than headaches and a stiff neck at times everything else is fine. No real sensations or anything like that. My neuro has told me that Keppra is the 'keeper'drug as he calls it. He can't see taking me off that at all, but with a low dose of that odds are in my favor of staying seizure free. At one point when I talked to him about my headaches he said slowly they will become less intense and less frequent, and well he's right. Getting off the medications I was on was just as tough on me as getting used to taking them in the first place. Recovery at times seems to be never ending but slowly getting better and better
Hang in there :)
GG / Erin
Hi JC
My surgery was done in London, Ontario. Headaches are quite frequent - average 3 days a week at least. Typically if I wake up with one, it lasts most of the day. Just dull and annoying, but I work through them so on a pain scale well somewhere around 5. Recently my occupational therapists suggested wearing sunglasses indoors and outdoors and that seems to be helping to cut back on the headaches I get. When pain gets really intense if I'm at work I'll take Motrin, at home I just turn out all my lights, put an ice mask on my eyes and sleep it off. Other than headaches and a stiff neck at times everything else is fine. No real sensations or anything like that. My neuro has told me that Keppra is the 'keeper'drug as he calls it. He can't see taking me off that at all, but with a low dose of that odds are in my favor of staying seizure free. At one point when I talked to him about my headaches he said slowly they will become less intense and less frequent, and well he's right. Getting off the medications I was on was just as tough on me as getting used to taking them in the first place. Recovery at times seems to be never ending but slowly getting better and better
Hang in there :)
GG / Erin
Re: Experiences in surgery recovery
Submitted by GodivaGirl on Sat, 2013-07-20 - 22:06
Just wondering since your surgery have you decreased the number of medications you are on at all? Why I ask is I had right temporal lobe surgery 2 years ago and well, like you I'm seizure free but still get a lot of headaches. Prior to my surgery I was on Topomax, Keppra, Clobazam & Ativan. Since my surgery doctors have been phasing out my medicine slowly. Right now I only take Keppra. I'm glad to be on way less meds, but at the same time I get a lot of headaches. Doctors tell me it's just adjusting to not having so many meds in me.
Wish I had that precise answer for you, but I'm always just told things will get better in time. Not sure about you, but drinking lots of water helps me tough out the headaches, and well I just look on the bright side - 2 year seizure free.
Hang tough
GG
Judy
Just wondering since your surgery have you decreased the number of medications you are on at all? Why I ask is I had right temporal lobe surgery 2 years ago and well, like you I'm seizure free but still get a lot of headaches. Prior to my surgery I was on Topomax, Keppra, Clobazam & Ativan. Since my surgery doctors have been phasing out my medicine slowly. Right now I only take Keppra. I'm glad to be on way less meds, but at the same time I get a lot of headaches. Doctors tell me it's just adjusting to not having so many meds in me.
Wish I had that precise answer for you, but I'm always just told things will get better in time. Not sure about you, but drinking lots of water helps me tough out the headaches, and well I just look on the bright side - 2 year seizure free.
Hang tough
GG