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seizure surgury

I am going to have left temporal lobe surgury in Jan. or Feb. and they are talking about possible removal of my left hippocampus. Has anyone had this removed. If so, how are you doing, what can I expect? I have had a wada, and pet scan already. The surgery will depend on the grid test which will be next. They are to call within a couple of weeks with the scheduled date. I will take any info you can give me. Are you still on meds? are you seizure free? how long since your surgery? p.S I am also a type one diabetic, anyone been in my shoes? mulleca of Minnesota P.

Comments

Wow, I am also type 1

Wow,
I am also type 1 diabetic. I had a left temporal lobectomy with hippocampus and amygdala removed also end of September of this year. And I have been totally seizure free since! my meds were decreased and will be slowly weaned over the next year or so. It was a rough year leading up to it for the whole family but I have to say it was well worth it. My seizures were triggered by music and I can now listen to music without any problems! The recovery is rather difficult at first (I had a lot of nausea) but I haven't had any memory loss or any other deficit so that is great. I hope everything goes well for you. If you have any questions, please feel free to ask.
Sincerely,
Chumtochatwith

(chumtochatwith) how did you

(chumtochatwith) how did you do with your diabetes? I am on an insulin pump and they want to disconnect me and give me injections. I have been in control and off of injections for 10 years so allowing a medical team to take over, will be out of my comfort zone. I am in good conrol of it, however, I have been the one doing it. Were you in intensive care very long and unable to manage your own diabetes? How long were your blood sugars elevated afterward?
mulleca

Re: (chumtochatwith) how did you

Hi-

Hi

I have also been on a pump for many years and control it myself. I have been in surgery twice while on it and what they did was to disconnect the pump during surgery and give me an intravenous of glucose during the procedure and check my numbers during surgury. They had insulin available if necessary. Because I was not allowed to eat for so many hours before surgery, the glucose was almost more important than the insulin. When I regained consciousness they contolled my numbers until my diabetic doctor gave them the OK on using the pump. Most of the nurses did not know how to use the pump anyway. My diabetic doctor talked to the Surgeon and came to see me everyday just to check on things. All of this was discussed by both
doctors about a week before surgery.

Good Luck
Joan

Re: Re: (chumtochatwith) how did you

Hi Mulleca,
I am Not diabetic, but I did have left temporal lobe lobectoby and partial removal of hippocampus in March this year (2006). I was in hospital 7 days.
I came out of the anasthetic very clear minded, knew where I was and recognized visitors and was able to speak when I came out of anasthetic. I was off work 7 weeks and early next year (2007) my neurologist will start slow withdrawal of medications if all is still going well. I will be able to get a drivers licence next year- I've never had one, I am able to do things now that had restrictions before for my safety. Aussie 2006

Re: (chumtochatwith) how did you

Well, they also disconnected my pump during the surgery. Afterwards, I had to take a steroid med called decadron or something like that and that in itself made my blood sugars high. This med was necessary though to prevent swelling of the brain. I was in intensive care for two to three days and my husband had to help me with changing my infusion set and testing my blood sugar. My blood sugars probably didn't get back to normal for two to three weeks. But it takes some time for medication to totally leave your system. You will be fine Mulleca. Good luck.
Chumtochatwith

Just one more bit of advice

Just one more bit of advice mulleca,
Before you go in for your surgery, make sure that your husband or caregiver knows how to change your infusion sets, replace the reservoir, and how to control your pump and glucometer. Also, make sure that they know ahead of time that for the first week or so, you will be in pain and quite medicated so they will have to help you for the first little while to manage your diabetes. While I was in the ICU the nurses took care of my diabetes with mdi but after that once I got into a semiprivate room it was up to hubby. Luckily, I had thought ahead of time to bring along the instruction manual for my pump. My husband is rather savvy so he was able to figure things out but had never done it by himself before. So, if I was to go through this again, I would make sure that he had a better idea how to do this. One other thing, expect to have to deal with nausea. Now for diabetics it is a little more difficult when you are on insulin and end up vomiting so also make sure that your caregiver knows what to do if you end up experiencing as much nausea as I did. I actually found that I could avoid any vomiting by just taking Gravol throughout the day and night. I probably had to do this for three weeks or so after my surgery. Good luck,
Chumtochatwith

Re: Just one more bit of advice

Thanks for this advice, you are all awesome! I got a call the other day for an update, my doctor was in the hospital and they just wanted me to know I wasn't forgotten, and said they would be getting back to me at the beginning of this upcoming week with a surgery date, and that it is looking like the 3rd week in January. I am on a paradigm pump with the bolus wizard so I will make sure my husband learns now, how to operate it. Thanks so much, you have been so helpful. I will be in touch.
mulleca

Re: Just one more bit of advice

Just wondering how you are doing since your surgery. I haven't seen any updates in awhile. I am going next week for my ltl craniotomy and appreciate your advice on the insulin pump. Hope all is well.
Mulleca

Re: Just one more bit of advice

Just wondering how you are doing since your surgery. I haven't seen any updates in awhile. I am going next week for my ltl craniotomy and appreciate your advice on the insulin pump. Hope all is well.
Mulleca

Re: Re: Just one more bit of advice

Hi Mulleca,
Actually, I am doing great. I have been seizure free since the surgery so it looks like a success! I hope that things go as well for you. I'm glad that I was able to help you out Mulleca. If I can make it any easier for you, that is what I would like to do. So from my experience I am trying to help as much as I possibly can. Let me know how things go. K?
Sincerely,
Chumtochatwith

Hi mulleca, I had a left

Hi mulleca,

I had a left frontotemporal craniotomy/selective
amygdalohippocampectomy last January and have no problem recognizing things.
Words sometimes take a minute to come to mind (short term memory) but I was told I had this before surgery also.
Fortunately; so far, to my knowledge, I have had no seizures since and am due to nix meds a year from surgery (= next month).

But, I am nervously aware that surgery does NOT work in all cases, so given that I have been taking meds since I was three (and suffered 'many' disappointments in drug control before) I am not about to celebrate until I am completely off meds, & tested.

Temporal Lobectomy : "After surgery, 60% to 70% of patients are free of seizures that impair consciousness or cause abnormal movements." http://www.epilepsy.com/epilepsy/temporal_lobectomy.html

I truly wish you the best
~sol

Re: Hi mulleca, I had a left

meeciamecia Hello, I really don't know where to start @ here.First off my neurologisit brought it to my attention about me haveing brain surgery. He tried to see if I was a canidate for brain surgery, well while I was in the hospital after all of the test (s) they couldn't pin point where the seizures were. But still asked if I would go through w/ the surgery. I told him then NO & I still say NO when he brings it up. See w/ every surgery there is a risk & that is a big risk to take. Is brain surgery something that you would recommend or what?Alot of people understand how I feel about it, but I still want to know more.

Re: Re: Hi mulleca, I had a left

Meeciamecia,
I really depends on the type of seizures you have first, and where they are stemming from in your brain. If you mostly deal with simple partial or complex partial seizures, it's most likely they are originating in one of your temporal lobes. If that's the case, a temporal lobe lobectomy is promising. I had one three years ago and have been seizure free since. I'm still on meds but am considering attempting to reduce the dose I'm taking now. I definitely wouldn't go through with the surgery if they aren't 90%+ sure of where the seizures are triggering from. Often times temporal lobe epilepsy is difficult to treat with medication. Overall I would recommend surgery for TLE patients. I think the likelihood of successful seizure outcome exceeds struggling with seizures for the rest of your life. Oh, it's also very important to search around for a good neurosurgeon ahead of time. If you have any more questions, I'd love to share more of my story with you!

Re: Hi mulleca, I had a left

What kind of meds are you taking after your surgery and is it the same dose as before? I am currently on zonegran and I too have been on everything under the sun with no success. I just want my independence back and want to drive again. I just read a story under the surgery issue from a lady who is asking for help concerning her mom, will you please read it, and can you relate to any of those issues at first? The moodiness, feeling like you aren't the same person? Does your family see differences in you now that it has been almost a year? The thing for me is this, I lost my mom 7 years ago to a seizure. She had one in her sleep and suffocated in her pillow. I know this scares my husband every time he leaves for work in the morning, and I am still in bed. So, I have elected to have ltl surgery next month. But after reading this ladies concerns about her mothers surgery... I am wondering...I am 39 years old, and I don't want to miss my opportunity, and have the doctors tell me in a few years that I am now too old, or that my diabetes is now out of control. To me, I feel, now is my time to do this. But, after reading her concerns, it scares me a bit. What do ya think?? Mulleca of Minnesota

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