Looking ahead to surgery, but fear is setting in.

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

I haven't been on here in a while so I finally checked back in and realized Bigman would already know what went on lol.

Seriously though, that is all I could think of to explain the contraption they use to keep your head still. How would you say it? :)

Were you awake or asleep for your surgery?

I am so happy to hear how you are doing! I myself have definitely been counting the days, and I cannot wait until the 1 year mark! They are already tapering me off my meds, which makes me oh so happy. The last thing I want is to be on 3 different meds when it comes time to having children.
 
oh no i thought that was a great explanation (tho you'd know it better as i wasn't awake). knew what i would look like tho after tons of research prior. cute!

that's amazing they're taking meds down before the one year mark, no go on that here, it's
one year or better. *nod* i hear ya, three meds at once is a real $%&*@! drag.
 
I didn't even think of them shaving my hair off until a week prior to the surgery. As my hair has grown back, my boyfriend has called it my "Chia-Patch" and loves to play with it lol. I have to say that he has been incredible through all of this.

They are taking me off my meds and have said that tapering at 6 months vs 1 year there isn't a huge difference and they feel confident that I will be seizure free.

I hate taking the 3 meds at once, and even though I am used to them, I don't want a high risk of anything happening to the baby due to the medications.
 
Hey Bigman,

I know exactly where you are coming from as I had surgery 6 months ago. They removed my left hippocampus along with 5.5cm of my left temporal lobe. Ever since then I have not had a seizure. I am still on my meds, however they are currently taking me off the keppra.

When I had my surgery I was awake, and even though this hurt more and I heard sounds I never want to hear again, I am so happy I made this decision. My surgeon originally wanted me asleep for the procedure, but there was a better chance of me
seizure free if I was awake so he could remove as much as possible. Originally he wanted to remove 3.5cm, but since I chose to stay awake, he removed 5.5cm. This has given me a better chance of seizure freedom.

I hope your recovery is going well!

Kate

I'm past 5 month mark on Oct 13th. So far everything looks good. :) My surgery was just the RTLS, and I was asleep. I plan on staying on my med. for the minimum of two years. After that I will consider to reduce my dosage, if everything stays good.
Good luck on your continued path to be seizure free.

oh and bigman, no worries about the swelling and other oddities, you're a soldier and have battle wounds! and you are right, symmetrical 100% isn't going to come back, it will always 'stand out,' however it's really only noticeable to
us b/c we look at it so often. we're gorgeous!

:hugs:


You bet I'm a soldier. I may not wear combat boots, but I got my battle scars inside & out. I'd don't think I'm gorgeous. But a few older friends said I looked like a young "Clark Gable". I don't see it. If I was to choose, I'd say I look a little like a Caucasian "Ice Cube", or "Opie" from Sons of Anarchy.


I haven't been on here in a while so I finally checked back in and realized Bigman would already know what went on lol.

Seriously though, that is all I could think of to explain the contraption they use to keep your head still. How would you say it? :)

Were you awake or asleep for your surgery?

I am so happy to hear how you are doing! I myself have definitely been counting the days, and I cannot wait until the 1 year mark! They are already tapering me off my meds, which makes me oh so happy. The last thing I want is to be on 3 different meds when it comes
time to having children.

Contraption? I have no idea. I was asleep during my surgery. Once I got to pre-op, they hooked me up, and knocked me out. The next thing I remember was feeling like a 18 wheeler ran over me.

I'm also counting the days. It's two years of seizure free before the med. is touched.
 
Nov 13th, 6 months and still going strong!! :)

2poqqg0.png
wwb66f.png
<------:)

I just gotta keep on working on getting the rest of my body in shape. :)

It would be great to have a new body by the two year mark. But I'd settle for something at least halfway there. lol
I'm currently at 258lbs, my goal would be around 225lbs.
Although those so-called BMI charts say 195-205lbs.
I believe 225lbs would be a more realistic and manageable weight for me. Once I get down to that and get into a better routine, then things could change. :)
 
Hi Bigman,

I myself am working on losing weight, and I'm hoping that going off the meds will help! I never really followed the BMI charts, and at times I felt it was a but off, so going for what is manageable, and not what a chart says is a much better idea. Plus when you have a goal that you feel is realistic, it is much easier to meet, and once you meet it, it's much easier to stay at that weight. I hope for the best for you with that!
 
Thx :)

I've talked to a few nurses and doctors about the BMI Charts before.

According to those charts I classify as obese. lol

I asked them if a guy that is 6'1" (me being 6'2"), 37yrs (me being 35), weighing 251lbs (me 258lbs) would be considered obese? Probably, was their initial response going by the BMI Chart.

The "guy" I was using as reference being "John Cena". lol
After I explained that, they quickly told me that the BMI Chart are used a guide.

That's a pretty flawed guide to use IMHO.

_____________________________________________________

Hopefully being off all these medications down the road will help me also. :)


Good luck on your weight loss. :)
 
Dec 13th, 7 months and feeling good! :)

Looks like this early present doesn't need to be returned. :)

_____________________________________________________

But I just found out my current neurologist is releasing me to another. That's both :(:)
They work together which is good. But I was getting used to my current neurologist.
Now I need to start all over again. :( As long as the new neurologist listens to me, we
shouldn't have a problem.

Just when the road was becoming a pleasant journey :) , I hit a pot hole. :(
 
Switching doctors is always unsettling; I feel for you. I hope it works out. Glad you are feeling good otherwise :)
 
Thumbs-up for your continued good health!
 
8 Months and going! All looking good so far. :)

Feeling good, getting to the gym 2-3 times a week. Beginning to see the results. :)
Each month I plan to up my level of intensity at the gym.
_________________________________

I'm due to see my new neurologist soon. I can't wait for that adventure. :):(

But other than that, things are looking good. :)
 
8 months already? Wow that time gos quick.
Glad you are still going well Bigman :)
 
Thanks for the update, Bigman, and congratulations on continuing to be seizure free! Good luck with the gym work outs :)
 
Terrific news. Here's to your continued good health!
 
9 Months and no seizures. :)

My recent PCP appointment went good. Doc is pleased that I lost some weight.
I'm at 242lbs, loosing another 20lbs would be great.

In a couple weeks I see my new neurologist. :(:) Hopefully that visit goes well.
 
Must be one of those rare times when you look forward to going to the neuro. :)
 
Congratulations on continuing to be seizure free, and for the weight loss :)
As for seeing the new neurologist, having someone else suddenly step in and take over the reins (so to speak) can be nerve wracking. Good luck and I hope that goes well. Keep us posted!
 
Yes, it is taxing on my nerves. Just when you get "used" to a neuro, you get switched.

But I'm gonna give this new neuro a chance. As long as my timetable doesn't get messed with, or any other changes, it should go smoothly.

Thx, :)
 
Congrats on being 9 months seizure free & the weight loss :).
Good luck with the appt with your new neurologist
 
Well my new neurologist is a :):( so far.

Hmm, let's see. I'm always early to all my appts.

But once I got in the exam room, the neurologist was 30 minutes late. :(
Then puts the blame of being late on my previous neurologist. :(

Friendly, pleasant, didn't try to push for any changes. Did the usual neuro tests:
eyes, balance, reflexes, etc.

Well on the a scale of :( 1 - 5 :) this new neurologist rates a [ 2 ]
My previous neurologist rated a [ 3 ], because my appts could go either way.
While my neurologist before then rated a [ 5 ], always on time, listened, went out of the way to get the best care possible. If I could get to that neurologist, I'd still be going.
__________________________________________________________

Why does the medical community, insurance companies and what not drive the really good doctors away?

In the past tens years I've had 4 (*3 PCP & 1 neurologist) really good doctors that were driven away because of the system. These doctors are in their chosen fields to help people, not in it to become rich. Three of them have moved to practices outside of my area. While my current *PCP has found a place in my area (for now).
 
Back
Top Bottom