Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

pain issues after surgery

Anybody have any info on how they dealt with the pain issues from the jaw and the incision pressure? All in all it could be worse but I have to admit I am hurting. The depression is also setting in a bit and my doctors have not had a lot of info for me regarding what sort of reasonable expectations I should have for myself. I mean of course it was only a week ago and I know not to go run a marathon, but can I exercise? What should I avoid? I'm a dance teacher and the complete inactivity is getting to me. For me inactivity breeds mania. Anyone out there relate? Maybe when I get more of the meds out of my system I'll feel a bit better but right now it's pretty rough. I'm pleased, they did what they set out to do, and they saw the seizure focus very clearly and got what they wanted but it is just harder to bounce back than I thought. Also the big dent in head isn't too pretty but it will get better. It's mostly the jaw and cheek and eye socket that are really bothering me. I got the staples out today and oh boy was that nice!

Comments

Re: pain issues after surgery

Hello Mary,
Your not going to be yourself for a while. I had my Right Temporal Lobectomy 10/12/06. I had the surgery on a Thursday and went home Saturday morning. For the first week home my husband wouldn't go to work so that he could keep an eye on me. I wasn't going anywhere for the first
week anyways. I was on the couch with ice packs around my neck and on my forehead. Then the next week I started getting more restless and he was back to work. I stopped taking the pain Medication a week after I got home from the hospital because it caused me to halucinate. So after that
all I took for pain was advil. I have been extremely lucky with my jaw. I have no problems at all, just that I can't open wide enought to
eat a SUBWAY sandwich. hehe. Where the incision is I don't have a lot of problems with either except when I put on my glasses in the Laboratory. I work in a Medical Research Laboratory.
I was really lucky with the depression issue. I have so many friends that came over and brought us meals and I have a great company that I work for and they let me come back to work as soon as I got the ok from my doctor. I was back driving 2wks after the surgery and have been working full time for over a month now.
The things your asking are different depending on the individual
person. Some people would stay on the couch for 3months and love it. You sound like you are more like me, but take it easy and don't rush things. Like my surgeon told me with my 1 month check-up, "Cathy, your
incision looks absolutely great, you look super, BUT remember you are still healing inside. Too much activity could cause bleeding in there
and it isn't worth risking." So I listened to him and now I am doing extremely great.
Actually, I have been asked by the Epilepsy Foundation Association to join them in Washington D.C. as a representative for Maine in the "Public Policy Institute Advocacy Conference" I am so excited about being part of it.
Hope this has helped you. Things will only get better for you. But don't expect it to happen over night and take it easy.
Good Luck,

Cathy

Re: pain issues after surgery

I had two surgeries the first was on Monday, They put wires on my brain to see exactly were my seizures were coming from. They did know that it was coming from my left temporal lobe but wanted to pin it down even closer. My second surgery was on that Friday, that’s when they removed the damaged part of the brain that was causing my seizures. I had a real bad headache after my first surgery, and after the second for about 3 weeks, but I still am so glad that I did it because I have been seizure free. The headache was from them having to open the skull. It is like having a broken bone. The brain in itself does not feel pain.

If I was you take is easy. You won’t be able to do a lot of things, just remember you had a major sugary and it’s like a shock to your brain and body, and that shock is why you feel the depression. It is your body’s reaction to all that you have been through. It happens with most surgeries. Just know what it is and don’t let it get you. Rise above it and know the end result of all this is wonderful. I wasn’t able to do anything for about a month and a half. It may be different for you, but if I was you just take it easy and take one day at a time.

Hope this helps,

Re: Re: pain issues after surgery

Thanks for the info, every litlle bit helps. I'm almost 8 weeks post op now and my face is still swollen and even though I was put on a no salt diet I still swell up. Just wondering how long this is going to last. I drink lots of water, sleep propped up, and still every morning the right side of my face is swollen. Also, this is more of a feminine thing..... I have not had my period since the surgery (not that I'm complaining) which is odd considering that there is NO CHANCE I am pregnant. I asked the doctor and they said it happens sometimes as a reaction to the anesthesia. Anyone else experience this weird side effect?

Re: Re: Re: pain issues after surgery

Hi Mary,

It took a while for the swelling to go down. Are you sleeping on your right side at all (or avoiding it completely)? I avoided my left for a what seemed to be a l-o-n-g time after surgery, a few months. I was 6 weeks late on my period, which is *highly* unusual for me. I assumed it was because I'd lost so much weight. (I was down to 95 lbs, normal is 115-120 for me) Have you lost a lot of weight as well?

Give yourself some time to let your body adjust, Mary. It can take what seems to be ages, I know. ((hugs)) to you honey, take care!!

Heather

*refractory seizure surgery on left temporal lobe 03/06*

Hi Mary :) Know I'm thinking

Hi Mary :)

Know I'm thinking of you and wishing you the very best.
I was oblivious to any pain or swelling as I was on Demerol (a great pain killer) for 3 weeks after surgery.

~sol

Heather, your year since surgery will be soon. Congrats!

Re: Re: Re: pain issues after surgery

I also had swelling on the side that I had my surgery. I looked like something from outer space. It took me about five weeks before my swelling was down. Sorry I can't help you with the other issure. lol

Re: Re: Re: Re: pain issues after surgery

Thanks for all the info everyone. It is helpful! I'm making progress. My internist put me on a diuretic which is helping the swelling but it is still there. I often have sharp pains on the top of my head which is a little disconcerting but I can at last let the right side of my face touch the pillow at night which is a big milestone! My surgery was on January 3rd and only now am I starting to feel a bit like my old self. NO stamina at all which is a drag but at least I'm no longer in constant pain. Just what I would best describe as great discomfort.

Dinger57, could you give me

Dinger57, could you give me some specifics on your epilepsy, and your surgery? My son is 26 years old, has had seizures from a brain injury 10 years ago. He had surgery at the time of the injury as he had a massive hematoma that was putting severe pressure on his left frontal lobe. I'm told that the scar tissue is probably what has caused the seizures, as he didn't have a seizure until 2 years after the surgery - a gran mall and many more thereafter.

His seizures have been under control, mostly, over the past 8 years, until 2006 - where they became more frequent - multiple complex partial seizures daily. He is now on his 4th medication and not doing well with it - Zonagram. He has lost 20 pounds in the past month and is having kidney trouble. His Epilepsy Specialist, after testing and consulting with his team has recommended that he consider the surgery.

Matt's quality of life is crap. He has lost his job, his house, his dignity, his confidence, and is suffering from depression. He is my only child and I'm tortured on what he should do. I have scheduled an appointment with Mayo Clinic and will take him up there in May for a consultation. He's such a good person, is newly married and just wants a normal life. I certainly want that for him too, but don't want to risk losing him either. I am truly terrified, as what I've researched for the intrusive mapping surgery sounds so barbaric, not to mention that he still may not even be a candidate for the lobectomy. Please share your thoughts and experience. Thank you.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P