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I'm Having some Major Issue's After My Surgery...HELP
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IPersevered posted:
Hi everyone,

I've returned here for some feedback and to read some of your own stories or situations similiar to mine that you have gone through and how you have dealt with it to overcome it.
Just a month ago I had a Temporal Lebectomy surgery done and it's been a month and one week now without having one seizure! =)
However, I need to here from anyone who is or have experienced following a surgery, a difference in terms of your whole self?

Have you experienced any panic/anxiety attacks?

Some depression?

Feeling of Isolation?

Regrets for having the surgery?

Major Memory Loss? Within time, were you able to completely retreive all of your memory to where it wasn't a struggle to find the words your trying to say? If so, how long did it take and what did you do to help yourself get better?

My BIGGEST concern is the struggle with retreiving words that I used to be able to say without thinking and now it's difficult for me that it makes me feel incompetent and I believe that leads to the depression I am experiencing. I am a Junior in College with a 3.60 GPA and have received a scholarship for this fall. However, I feel like I cannot handel 12 unit of classes anymore since my memory has become very poor. I'm so scared that I will never get my memory back to what it was before.
I also have this feeling that I will not be good enough to be a Pharmaceutical Sales Rep. This was a career that I was so passionate about and now, I feel different. Sometimes, I don 't know what to feel and think there is no place for me. My brother offered me to work at his convenient store where I would be a clerk but that isn't a very challenging job for me and yet, I feel my post surgery issues does not allow me to feel confident to apply to such jobs I just feel that my quality of life has been robbed from me since this surgery.

I feel very lonely. I never felt lonely before. I have a GREAT supportive group. A wonderful family and friends but I still feel alone and at times I feel like a different person I don't even know. Everyone says that "i'm more calm and collective", I don't fuss about the little things anymore and less arguments with my mother and they love it. That's one positive note as a result of this surgery along with not having a seizure since the surgery but the bad things that I'm noticing out weighs the good things...I have lost my own identity!!!

When I go through those emotional roller coaster depressions of what my life has become since my surgery, the thoughts of not existing anymore sounds more easier than to have to face these issues and differences that has been occurring in my life. I'm embarresed of myself because I've been a high achiever and to feel less competent makes me feel like there is no place for me in this world at least not where I am anticipating to be.
I don't know what to do! how to feel and I sure as hell don't feel like the old me. All of these problems make me regreat having this surgery. Please HELP Me understand myself again!
Reply
 
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saxofone1 responded:
Hi "IP"

I had a partial rt lobectomy in '02. I don't have any regrets about it. Today I'm doing great.

Your brain could still be healing from the lobectomy. You have gone through serious surgery and will need time to recupe.

The first few days following surgery I experienced TOTAL AMNESIA. I didn't recognize anyone. It did pass. I also experienced what is called hyper-familiarity which is when you don't recognize the things/people you know but recognize others as 'friends'. It was strange and scary, a bit frustrating.
It passed.

How did I handle post- surgery and the time of confusion? Well, I was invited to do some work at an elementary school that I was once employed at. This steady activity, and being around people that knew of my epilepsy and the surgery, was great. It made my recovery all the more pleasant and gave me positive outlook regarding not being able to return to work as had been planned prior to the surgery.

I did go through a period of depression. Not being able to return to work right away was very upsetting. That's why the volunteer work was so important. It gave me something to do so that i wouldn't drown my thoughts in the negative.

About school, hmmm. My first seizure happened when I was in the 8th grade. Like you i was an A- b student. My meds made it hard to recall my lessons. I refused to give in to my seizures/meds. College was tough but again I keep going. I

Is it possible to get your scholarship adjusted so that you can carry a lighter load because of medical reasons. Talking with the school social worker/guidance counselor might be helpful.

I feel there is NO reason why you can't be a pharmaceutical sales rep. Wow, you have the inside info on some of the aed meds. You'd be a good rep. How many other reps would be able to give the info that you've already lived through.

YOU ARE NOT ALONE. Epilepsy can be lonely but you have us in your corner. You have made a major step in reaching out for answers instead of wallowing in self-pity.

It's only been a month. We can't always jump right back into the game. Give it time and take it day by day.

You have perservered. You had the surgery, you are going through recovery AND you are asking for answers.

DON'T QUIT on yourself. You have my support. Think outside the box. I feel all this uncertainty will pass as your recovery moves on.

KEEP PERSEVERING!!!! Keep in touch.

angie ps I hope this helps. Send me any questions that you have.
 
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clarinet2 responded:
Hello IP,
I agree with Angie about the amnesia, memory loss and not recognizing people. It takes time for your brain to heal so do not push yourself too much.

If possible maybe you could spread your classes out to give your brain and body more time to heal.

Angie and I both had the same type of surgery one year apart from each other. I was able to return back to work about two months after the surgery. I made sure to start out working half days to get my brain and body back into the swing of it.

Even small things such as grocery shopping was difficult because of the amount of people shopping and all of the bright lights.

Continue to moving forward and do not give up. I work with pharmaceutical drug representatives daily at a VA Medical Center in our pharmacy department and that is a great career.

If depression continues seek counseling advice through your doctor. Depression is a side effect after surgery. If you have friends to socialize with keep in touch with them and do not give up because your perserverence is a great accomplishment!

Dana
 
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dancer86442 responded:
Hello,

I do hope you didn't think I was ignoring you. I haven't had surgery & wanted those w/ experience to chat w/ you, first. :) I'm sure Meredith will respond, soon enough. :) You chatted w/ her in previous posts. :) Speaking of, I re-read them & I wanted to remind you of this: "I'm looking forward to being 1 mth seizure free". You've made it 5 weeks & counting. :) :) ;)

As a person w/ 'controlled' seizures, I still experience the same emotional rollercoaster. So, I Do know a bit about what you are experiencing. And if the Support of family & friends ain't enough, then Please, Seek help. Seek Professional Counseling. Inform a DR. I have never been as 'Low', but, my Sis was. On a Daily basis & it wasn't just 'casual' thinking. :( She informed her Homeopathic MD about her Depression Level & he stabilized her moods w/ Vitamin D3, 2000IU to 5000IU daily. And placed her on a progesterone cream to control her Catamenial Seizures. She is seizure/depression free after 50 yrs of on & off Seizures.

I guess what I am trying to say, is even if you Hadn't had the Surgery, meds &/or EP would have created the Same issues. And there are ways for you to overcome them. It will take Time & Patience & your Strength to get you back on your feet. Just take it One Day at a Time. One Moment at a Time, if need be. Help yourself. Did you know that 15 minutes in a 'green spot' (nature calls) can 'pick your spirits up'? :) So can talking w/ a friend on the phone. Pick one who will just let ya ramble for however long it takes to make you feel Good again. :) (This helped me. I called my GF any time of day or nite, on a weekly, some times twice a week, basis. She would let me 'chat' for Hrs about anything & everything. :) ) Also, Exercise your brain. Use comp games, word games, numbers, flash cards, on a daily basis. Eventually, Learn a new Hobby, craft, Yoga, gardening, music, etc. (Although where you fit that in w/ classes, well, 'easier said, than done' Huh? :) ;)

Just don't push yourself real hard, as the others said. Your ID says it All! :) So, keep talking w/ us & Prove it to yourself & others! ;) HUGS & ENJOY your day. Another Day Seizure Free! Stop Smell the Flowers, find a joke & laugh, may be to early to 'dance in the rain' but, hope you feel the Music. :) Making Sense? BTW: :) We have a thread w/ some Jokes Ready for you. I'll 'bump' it up. :)

And Thank You for coming back to see us. Your timing couldn't be better, since our new friends have 'been there, done that'. Know we care.

Love Candi
 
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saxofone1 replied to dancer86442's response:
Hi Miss "IP" and hello Candi

I hope you are having a good day "IP". You cont to be strong and search for the answers that will make this journey as easy as possible.

Remember, the strong look for solutions/answers and are not afraid to ask for a "helping hand" whereas the weak will settle back for whatever.

KEEP MOVING FORWARD. YOU ARE NOT A QUITTER!!!!!

angie
BTW Candi, is it ok to leave our personal email when we submit a reply. It might be more comfortable for IP to chat about some things via email than by sharing it with everyone who reads this discussion. Just a thought.
 
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IPersevered replied to saxofone1's response:
Hi Angie,

I'm sorry for responding now then sooner. I haven't been in the best mood these last 4 days and just haven't felt like even looking at my computer. I have read what you have said about three times since my memory has become so poor and wanted to be sure that I remembered everything you said. I appreciate your response to my message and I greatly appreciate your advice and your thoughts.

As far as my scholarship getting adjusted I will have to double check on that eventhough I've never heard that they would care to make any adjustments. However, I'm pretty hopeful that the other scholarship I applied for through the S.D Epilepsy foundation is in my favor and I'm sure they would be more understanding than the other scholarship.

I think I'm going to try hard to do something similiar to what you have done by getting involved again with something I was doing before. I remember how rewarding it felt to help other people suffering from epilepsy. Since school is out right now, I will get in contact with the Epilepsy foundation where I have been a Volunteer/mentor for 11 years.

I'm surprised that I could ever become this way. I feel like the tables are turned and now I'm the one who needs the help. I never imagined something like this could ever happen to me. =(
My pastor this past Sunday was talking about a verse from Hebrews 6:1 "going on means changing the direction" I always repeat that in my head to avoid getting emotional. But sometimes it wins. I'm going to try. I don't know how patient I will be but I will try.

Thank You again.

Rita
 
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IPersevered replied to dancer86442's response:
Hi Candi,

Thank you for replying to my post. I have taken the big step of seeking outside help not only through the Epilepsy foundation but through my doctor and will be speaking to a professional counselor. I'm a little nerveous and not sure how much it will help me but I'm going to give it a chance.

I would like to try taking that amount of Vit. D3 I wonder if that would make any difference on me? hmmm.?

I don't disagree completely with you when you said that things wouldn't have been any different even if I did not have this surgery. It was tough on me and it was getting worst which is why I had almost no choice but to go through with this surger. However, if i didn't have this surgery I would have still felt down at times but I wouldnt have had to endure everything that was different such as my slurred speaking and the hemorage that I had post surgery (which caused me to return to hospital), the problem retrieving messages, forgetting my own nieces and friends names. But I'm realizing through Dana and Angie that they had similiar experiences and it got better.

I have been spending time with my girlfriends to get me out of my house and its felt good. I just wish I could forget that I ever had this depression and try avoiding as possible but it comes to the surface like my panic attacks do at any time any place in the day. I HATE IT.
I have spoken to a friend about it when it happend during the time I was on Keppra but it deterriated after I was tapered off of it and it was gone. I haven't told anyone about the current depression, they think its only the panic attacks.

I will take your advice about doing something more productive during the day with games or crossword puzzels and reading as well. I bought two new books that i need to start on.

As far as not pushing myself, I try to be patient but when i feel better than I did the first 2 weeks, I do push myself trying to convince myself that everything is back to normal again but then, the memory and retrieving issues come to the surface only to remind me that it's not.

When you reminded me of what I said one time that "I can't wait to be one month seizure free" woke me up and reminded me how happy I once was to have the surgery and excited to see one month go by to not having one seizure. I realize that I need to count my blessings and be greatful to being a candidate and 2nd, to be greatful that the surgery went through safely and consider myself to being blessed. I will try my very best to remind myself of this.
I cannot make too many promises but I will take it day by day...I do want my old self back...I do want to feel apart of something that makes me proud...It has been a long journey for me through the ups and downs through my life with school and work while I have been dealing with seizures...it has been the cause of my set back with school. If I allow it to win, I would be extremely disappointed and it will put me at a low point of my life.

One of my biggest motivation for finishing school is to set the example to so many children and teenagers who I personally have helped and shared my story with letting them know that I finally made it to a university and so could they. I just need to finish proving that to not only myself but to them...I owe to them.
I would love to see the thread of jokes, I can certainly use the laughs. =)
Thank very much for carring and I really love it in here and feel like you and the rest understand and don't judge.


God bless,

Rita
 
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saxofone1 replied to IPersevered's response:
Hi Rita

It's so good to hear from you!!! Don't be concerned about the time it took before you answered. I understand how you're feeling right now.

I hope something comes along that will help you with your scholarship. Good luck on the one you have applied for through the ep foundation.

I think you're moving along well. Take it moment-by-moment, day-by-day. Your steps will get stronger and your confidence will too. Don't be afraid/discouraged 'cause things seem out of whack right now. PATIENCE is often the key to a good recovery. Be comfortable with what you do.

I feel that you'll be a great mentor/volunteer. It is rewarding and does have a positive effect on all involved.

I feel that I'm started to ramble. Let me know how you doing? Keep asking questions.

angie
 
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IPersevered replied to clarinet2's response:
Hi Dana,

Thank you very much for responding to my post. I appreciate you sharing your story and giving me some suggestions. I think I will need to spread out my courses this fall.

I will try my best to move forward and never give up...thats why I have turned to you and anyone else for some guidance.

Thank You so much for your help.

God Bless,

Rita
 
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dancer86442 replied to IPersevered's response:
Hi Rita,

Like Angie said, Don't worry about How Long it takes you to Respond. :) We will be here when you need us or w/in a 24 hr period, at least. You Know I'm here very Morn & sometimes at Nite, too. :) Epland just Can't get rid of me. :)

I read your replies & the replies to you. We sound so Peat, Repeat. Like You, I still have to re-read posts/replies to make sure I got it all. :) :) Having Memory Issues, that ain't such a Bad thing. :) So what, if it takes a little longer to recall or have to be reminded. Things Could be Worse. As You are starting to realize. :)

School Issues: Definitely talk w/ the Epilepsy Foundation & Your School Counselor & Your Teachers! Yes, the Colleges/Teachers, have Ways to assist You. And the EFA has the Answers! From class reduction to Extra Time to complete Papers/Tests. You must have Forgot? :) You mentioned, as a previous volunteer, trying to Prove to others you have helped w/ EP, that School is Possible despite EP &/or Surgery. So, you Must have known this Info B4 Surgery? Is that a Good Guess? :) Something to Re-Learn? :) Soo, More 'Homework'! ;) Visit the EFA site & browse or ask your Local Chapter. They won't mind re-freshing your Memory.

Rita, Forget the 'old self'! The Past is History. Now, is the Time to Focus on your Future. All the 'Good' is still w/in you. Just work on bringing it back to the Surface. Discover the 'New' you! New & with some work "Improved' You! I see It. I can hear it. Despite the 'frustrations' you have voiced. :)

I understand about the Depression hitting at any time of Day or Place. It is frustrating, for sure. But, that is when it's time to take Action & Fight to get rid of it or at least Diminish It. Whatever works for You. Find the Green Space, use Nutrients, exercise, phone talk, Psych Talk. Do It! Vitamin D3 increase Can't Hurt. Start w/ 1000IU & like meds, increase Weekly, till you note an improvement. Do Not exceed 5000IU w/out DR consent! Not an "overnite' Cure, but, then What Is? :( OK, Time for some More Homework. Ways Proven to Help w/ Depression. You already know the Signs, so skip to the Foods. :)

WebMD:
http://www.webmd.com/depression-recognizing-symptoms/foods-feel-better?ecd=wnl_bc_102110

Now, this site has too many answers to List. So bookmark/save as fav & take your time to browse & determine what Mite work best for You!

Real Age: Coping W/ Depression - Treating Depression

http://www.realage.com/soothe-stress/mind-and-mood/depression-symptoms-signs?src=health-footer

No one knew about my Depression, either. Only the 1 GF. Even Hubby didn't know back then. I think I told him though w/in the last few yrs. But, have reassured him it ain't as Bad as it used to be. And have reassured my Neuro that I Am Coping, but, will inform her if it gets Unbearable. :) Mainly, I just try to find Green Spots. :) I have started on D3 again. But, that is more for Bone Health, then Depression. It's a double Duty Nutrient. ;)

I'm Glad to hear you sounding a Bit more Yourself. :) Every Day Will get Better. Even if it's a Down Day. Hope you Enjoyed the Jokes. Me & Shelia posted new ones last nite. Funny! Feel Free to add a few of your Own Favs, if any. :) Tell your Friends to share a Few jokes w/ you, too. Put a Smile on Your Lovely Face. Brighten Your Day! :)

HUGS! I'm Glad you are a Part of our Epland Family. I Know I understand ya. And I sure ain't gonna Judge Ya! :) Can't Judge No One since I can't walk a Mile in their shoes. :)

Love Candi
 
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An_200762 responded:
Hi Ipersevered
I would like to share with you my results after my operation that I had. I had an operation being that I had epilepsy since I was little, but I had it were I would go into a stare then a deep cough when I was coming out of it and then I would be OK. I had the operation in June of last year (2010) and to this day I have been seizure free. They went in on the left side and took part of the brain out, I was scared when they were going to do this being that the Dr tell you all the things that could happen.

After the operation my memory was shot, just to try to think of a friends name that I have known for years and it wouldn't come to me. I even had that problem when I would try to say something like a pencil or some stupid thing that you know yourself you never had that problem before. With the memory loss though that lasted a good 6-8 months and the Dr even told me it could last up to a year. I still have some problems at times thinking of a word but nothing like before. Another problem I had after the operation that lasted about 2 weeks or so was a black spot that would look like a bird or something flying by. I would also have the feeling that I was going to have a seizure but never did, and that lasted for about a month or so.When I told the Dr about it he said to me your going to get that even though your not having one. In the beginning I was a little depressed being with the memory loss and the pain, I was having major headaches after the operation for a long time. I will be honest though in the beginning I kept thinking that with all that I went through I should of left it that way and dealt with the seizures instead, but now I can actually say it was the best thing that I ever done. I just wish you the best of luck and think positive and if you have any more questions feel free to ask me. My e-mail address is mickeysspot@yahoo.com
 
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phoenix_sun responded:
I di not have brain surgery but has VNS surger yand the inscion openedup almost somepleely. not docs fault the stitches er NTO strong enoug and tore. When ogt replace he used stronger stitches adn turned the coners of theskin in and taped it together after it had heals just to meak sure. no problems this time around.

it hurt like heck

phoenix_sun


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