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a_mkelly2000

Temporal lobe surgery

Hello to everyone who lives with and loves a person with uncontrolled epilepsy.

My beautiful 9 year old daughter is due to have surgery on the 29th of Sept 2009. Whilst we are excitied about the prospect of, 70% chance of becoming seizure free - we are concerned about the issue of stroke associated with the surgery. 

Has anyone experienced negative effects of the surgery? 

Concerned mother. Regards, Anne-Marie  

 

 

Comments

Re: Temporal lobe surgery

Hi Anne Marie,

My friend in Delaware is going to have surgery.Only in the frontal lobe and I am in the process of having all the necessary tests leading up to temporal lobe surgery.I wish I could help more but want to offer my prayers to you and your nine year old daughter.Lord knows I cannot experience your fears as a mom.Blessings.

PS - The 29th of September is my cousins birthday so that will bring you good luck :)

Re: Temporal lobe surgery

Tell your cousin happy birthday from me & my daughter. It was very nice of you to take the time to make a total stranger feel more comfortable - with what has been the hardest decision of my life. Thank you again xo

Re: Temporal lobe surgery

Hello there, i had surgery on my right side 2 and a half years ago. I was given a 70% chance of a cure. I have not had one seizure, not even in recovery as they said i would have. The chances of a stroke were slim. When they asked how i felt after my operation i said i feel like something has gone. Touch wood it has for good. I am a primary school teacher, i returned to work having had 2 terms off. It has changed my life and now i wish to channel my experiences teaching children with special needs who have epilepsy and have experienced surgery. It changed my life after 15 years of utter misery. i will never look back.

Re: Temporal lobe surgery

Hello MDC,

 

God to see you are doing well and had a sucessful operation. Hoping it goes the same for my hubby. You said the doc said you may have a seizure after surgery. have not heard that. Well my hubby is scheduled next month for a tumor removal removal. Did you have a tumor removed? if so what type?

awsome that you are helping children with special needs also. I run a special needs activity group and i have a son with Muscualr Dystropy. I know tons aonout special needs. Need help with anything, let me know. 

 

My husband  Bryan was diagnosed with a Ganglioglioma Tumor two months ago.  He is choosing to remove the tumor in the  left Temporal Lobe and is scheduled for the 8th of March for a Awake Brain Surgery.  Hoping he will also be seizure free and will not have to take meds.  He has had his seizures for 20 years and NEVER been on medication until this month. They are really making him have lots of icky symtoms.  He has tried the Lamotrigine and the Zonegran so far.  Doc says he wants my husband to be on something during his surgery so he is going to try a different med. very frustrating.  He only has the Partial Complex Seizures.  He cannot communicate or understand language for a couple of minutes and gets tired after.  He is fully aware and consious when having one.

Any pointers or questions we should ask the suergon or your Neurologist are appreciated.  Medicine advice and your experiences are useful.  Advice on surgery and post op and pre op are also needed. I want to be prepared for my hubby. I am the research nut as I learned to be 14 years ago as my son has a rare form of Muscular Dystrophy. I do all the medical research and only looking out for the best interest of my husband and our family.

 

Thank you so much for your help and support through this difficult time

Stephanie V

Re: Temporal lobe surgery

Hi Anne-marie.

I am 27 years old and also had surgery done to my Left Temporal Lobe. I was diagnosed with e right after I turned 24 (I will be 28 here on August 2). My surgery was done in November 2008 and so far things have been looking great. In fact, my last seizure was last September 2008. After my surgery I was put in the Epilepsy Monitoring unit at  my local hospital for about 4 days while I was recovering to make sure things looked great before they took my bandages off. 2 weeks after my surgery I had an MRI done and then a meeting with my surgeon who told me that everything looked great before he took my stitches out. I did however, take the min. 6 week recovery period before I went back to wokr to be on the safe side. The worst thing that I had was that I did have headaches and felt dizzy a few times during that period but all i had to do was take a tylenol or take a nap and I was fine. I was also on a few pain meds for the first couple of weeks but only as needed since they were very strong and could be the addictive types. Since then, I have had 2 more MRI's and just last month I met up with a neuropshychologist to check my short term memory to see if there was any difference in it since the left was very slightly stronger than my right. However, it was just my extremley short term memory that was nothing to be real concerned about. I wish your daughter the best of luck! God Bless!

Re: Temporal lobe surgery

Thank you for taking the time to answer my question. I found your response very interesting and informative. It gave me more insight into what my daughter Emmy can expected in those first few weeks after surgery. Thank you again xo

Re: Temporal lobe surgery

Hello.  I am 27 years old and scheduled for surgery in November.  I am absolutely terrified.  I live alone so it is one of the reasons surgery is a good option for me since I don't have anyone here to help me when I have seizures. 

Do you have ANY regrets at all with the surgery?  How bad are the headaches?  How has your mood been affected?  Also, how bad are the scars?  I am going to have a left temporal lobectomy.  Are there any "deformitites" after the surgery?  The reason I ask is I have read on another website that someone had a "dip" in the shape of his head after the surgery.  He could have made this up to get attention, but I want to ask anyway.  Thanks.

Please email me at colemcco@gmail.com

I really look forward to hearing your stories.

Re: Temporal lobe surgery

I started to get seizures when I was 18, for no apparent reason. I was on several different medications from 18-22 and nothing would control the seizures. When I was 22 years old, I had a left temporal lobectomy and since then I have had only 3 seizures. I have gotten my drivers license and I have been completley seizure free for the last 3 years. I am still on 400mg of Tegretol, however that is a LOT less than what i was on before the surgery.

 The headache after the surgery was extremely painful...but I think a couple days of pain was definetly worth it because I now have a drivers license and I am completley independent and seizure free and I am 31. There were no problems with the shape of my head or anything like that. I finished college and struggled through college but, I ended up being successful with a masters degree after the surgery. I am not sure if I would have been able to do that if I didn't have this surgery to treat my epilepsy. It has definetly been the best decision I ever made, I have no regrets at all! Very thankful every day for the surgery to treat my epilepsy!

 Feel free to let me know if you have any questions!

Re: Temporal lobe surgery

Hello Anne-Marie,

 I myself has had epilepsy for 29 years, and I am only 30 years old.  It started when I was 9 months old.  As life got harder and harder for me, I finally decided for the brain surgery, and mine dealth with the left temperol lobe.  I was told that my short-term memory could be affected, but it turned out that for only 1 month or so, the only things I would forget is what I was talking about if I was interupted.  Other than that, I remembered everything, including right after my surgery.  I was told I would forget everything for 24-48 hours after surgery, but once my mother first went to visit me after surgery, I remembered today's date, and the page she was on before me entering surgery.  Everything went fantastic.  Now, with it being almost 9 months later, I have still been seizure free from my surgery.  I just made sure I had lots of faith in my surgeon.

 If you wish for any assistance, I will do anything I can to help.

Karl

Re: Temporal lobe surgery

Thank you Karl for taking the time to response to me. Your story made me feel much more confident in my daughters upcoming surgery and in the decision that we have made on her behalf. Thank you again xo

Re: Temporal lobe surgery

 Good afternoon ,  I did have  epilepsey seisures for 5 years, they  started when i was 49 years old, I had  many test over the last  year, every month was something. I had left temporol lobe scar tissue which caused me to have 2 to 10 seisures every day.  Im 54 years old now, I had the surgery 7 weeks ago. I was a little scared to have it done also, but it was the best thing i ever had done . Im now on day 51 that  I ve  had no siesures. I was told my possibilty of being seisure free was also 70 plus percent. They told me all the things that could go wrong to. Which nothing did. As a matter of fact i was up and back to  normal in 2 days. they tell you about the things that can happen only because its possible, but the possibilty is very little. I do have a little bit of short term  word search, names of people, other than that every thing is very good. Have great faith in god that he will take care of your daughter for you. I wish you the best.       John    

Re: Temporal lobe surgery

Thank you John for taking the time to response to my question. I am comforted by the responses and stories that I am hearing. Thank you again - I will continue to pray for her and for you. xo

Re: Temporal lobe surgery

Anne-Marie -

 I am in a different situation but it is related.  I have had three temporal-lobe surgeries (left side) to remove a recurrent brain tumor.  Now, in my case, the surgeries have caused the seizures, but they certainly didn't cause a stroke.  I remember that I was very worried about stroke when I went in for the first surgery, but when I came out alive & well I was able to relax about it.  No strokes on any of the 3 surgeries.  I am 42 now; this all started when I was 30.

hope that helps

bunnydog

Re: Temporal lobe surgery

Thank you so much for taking the time to response to my question. I am sitting here with tears in my eyes, knowing that somewhere in the world - someone took the time to answer my question.

I will entrust my daughter to the amazing doctors at Sydney's Westmead Childrens Hospital. Thank you again. xo

Re: Temporal lobe surgery

Hello Ann-Marie,

 I would like to say you are more than welcome for any assistance that is needed.  If you wish for any further assistance, feel free to contact me, and I would LOVE to help out any and every way I can.  My thoughts and prayers are there for you and your daughter.  Best wishes.

 

Re: Temporal lobe surgery

Hello Anne-Marie:

I had a left temporal lobectomy done two summers ago, and haven't regretted it for a second.  It was a tough decision for me to make initially, but in hindsight, was sooooooo worth it.

Good luck to your daughter as she prepares for surgery, and to you as you wait and worry as Mom's do.

Re: Temporal lobe surgery

I had a right temporal lobectomy 3 years ago for uncontrolled seizures--my chance of success was 80%.  It was the best decision I've ever made.  I was surprised at how comfortable I was within days of the surgery.  I am now able to work full time, drive and complete my master's degree.  My IQ test results improved after one year because my brain was able to heal itself when I stopped having seizures. 

Definitely follow the doctor's orders always--I was terrified of having a stroke, but I was safe!  Please keep us posted!

I wish the best for your daughter!

 

Re: Temporal lobe surgery

hello,

may i ask your age? i've had seizures for 16 yrs. i have 4-6 a month. My job is questionable because i'm an elementary teacher. I just finished my masters which makes me proud. my seizures don't occur in the same place and i think deep and the neurologist doesn't recommend surgery. Maybe menopause will make a difference. I just hate not knowing when the seizure can pop-up. 

i'm happy to hear about your recovery.

Re: Temporal lobe surgery

I know how hard seizures can be so I wanted to reply to this.Stay strong and keep going!

  My seizures began when I was 12yrs. I was a candidate for brain surgery because my Neurologist had tried almost every anti-convulsant out at the time.They only gave me very bad side-effects because I am allergic to most anti-convulsants.The dr. that performed my surgery didn't want to go through with it the first one because of the lack of information that they had. Thank God that he didn't! That was when I was 16yrs and in 1997. I was very disappointed though. Growing up with epilepsy makes you have to watch many around you have chances that you don't have. It can be really hard on a teen!My father at the time was in community theatre (non-paid) My parents took me with them because I could not be left home alone. The only time that I looked forward to were the weekends at the theatre. Kids were so mean to me in school. The arts got me through it all. 

     My seizures just got worse after that. I had up to 100 seizures a day at my worst. I was on Diastat, had to wear something due to the lack of blatter control and was given anal injections to stop my seizures because some of them lasted up to 45minutes. Not all of them lasted that long though. One medication that I took made me have a seizure almost all day long. I had some TERRIBLE side-effects to medications!That type of trauma I would not wish upon my worst enemy!The arts did help and I tried out for small chorus roles because I would not let anything stop me. I couldn't dance though so the directors would have to take note of that each time. I was often given a role in the chorus and had to leave due to my health. I never could read lines well at that time so I never tried out for the leads. I had a seizure on-stage once. Someone picked me up and took me back-stage to finish it.

Painting was suggested to me after one of my mothers friends saw me have a seizure. I looked forward to learning about that so much. In 2003 my Neurologist suggested brain surgery again. Surprising many I went.

I woke up with my left side temporarily paralyzed, please note this was in 2003! I remember laying there looking at my hand, getting frustrated because it just wouldn't move. Loads of drs came to see me each day.I went through alot. I was sent to a rehab. center and I remember everyone looking sad. Some of them had strokes, some of them without legs, etc. so I did what helped me be happy. I sang! There I was in a wheelchair and I sang to give others hope.

When we had painting therapy classes, I remembered that I wanted to learn to paint. Until then, painting was not on my mind at all. Just getting my body to move right. I was stubborn though and wanted to get out of that wheelchair. To be able to eat on my own, take showers, etc. without having to have someone else there to help me. It really opened my eyes to be grateful to those that are there. Nurses, etc. that are there to help others without their help where would we be?

I worked and worked and worked. I could eventually walk, talk, eat, etc. all on my own. Now you can't tell to look at me that I am any different then others. I don't even walk with a limp.  I still have seizures now and my concentration depends on other issues such as sleep, etc. but I'm alive. I now know the HUGE risk that brain surgery is and I wouldn't of taken that risk if I were not so close to death and had not tried every other option. At the time honestly it really wasn't up to me it was up to my parents because I could not think. I am blessed to be alive. Now that I can think at times, I would have brain surgery again if I were so bad off that I needed it. I am not however anymore due to surgery. I would highly suggest it to those that are asking for someone else in need. I would however also suggest that you find out from a clincal dr. if it surgery is needed and all of the risks, etc. Way those risks.

Please note that now although it is harder for me I have painted as therapy throughout the years and am going to try to go to college for visual arts. If I can find the financial support needed that is.

I can not drive due to seizures but the pain that I have gone through has made me stronger. I would do it all over again just to be able to share my story. If I can do it, you can. Don't give up.....:) Stay strong.....

*HUGS*

Re: Temporal lobe surgery

Hi Anne Marie, my 28 year old son had a left hippocampus surgery on May 20, 2009.  I know the stress you are enduring. Dan has been seizure free since surgery.  We were scared of strokes and every other complication that they warned us about, but Dan came through fantastic.  He had total recall immediately after awakening from surgery. He did experience extreme headaches after surgery and his head got very swollen. They didn't warn us of that and we were in complete panic mode. Afterward they said it was completely expected, so don't be surprised if it happens to your daughter. We had a wonderful surgeon and I thank God for his talented hands.  My prayers are with you on this journey.

Re: Temporal lobe surgery

Hi Anne-Marie,

My husband had two temporal lobe surgeries last Oct. First they inserted the EEG grids in the brain and left them in there for about a week to find out the exact location of the seizure focus. Then one week from the original surgery they went in for the resection.

He came out of the surgery wonderfully. He had severe headaches the day after the last surgery, but he went home the next day! Nine days total in the hospital! He has only had a breakthrough seizure once since ( due to forgetting meds!!!) since.

Before the surgery, he was having seizures monthly, and they were life threatining. He was not a good canidate for the surgery, but they were sure that he would die sooner or later if we didn't try. It was the best decision that we've made! We are so thankfull to the staff at Brigham and Womens hospital in Boston!!!

Good luck with your daughter! I will be thinking of you!

Re: Temporal lobe surgery

Hi Anne Marie,

I'm sure you are feeling a little more at ease from all of  the positive feedback you have received. Your story struck me as i had surgery to remove a tumour from my temporal lobe on 29th Sept 06, Approaching 3 yrs seizure free!! It is easy for me to say now, being on the other side of surgery how worthwhile it was!!

It is a frightening time leading up to the operation especially when you are given all the risks etc though I truly believe there is so much experience and success in Neurosurgery nowadays. The sureons are incredible.

The operation and recovery was so much better than i imagined, the only negatives were a few terrible headaches, a little sore on the side of my head for sometime afterwards but all to be expected. I might add i wasn't a huge fan of having part of my hair shaved, it grew back so quickly though and you wouldn't know now unless i point out exactly where the scar is!
All the very best to you and your daughter, she is lucky to have you by her side, I will be thinking of you both and sending well wishes on the 29th!!!!

Sb

Re: Temporal lobe surgery

susi,

 

Would love some input on your situation. What kind of tumor did you have?  Did you take meds for your seizures? if so how long for? Happy to see the great outcome for you. That is awesome!

 

My husband  Bryan was diagnosed with a Ganglioglioma Tumor two months ago.  He is choosing to remove the tumor in the  left Temporal Lobe and is scheduled for the 8th of March for a Awake Brain Surgery.  Hoping he will also be seizure free and will not have to take meds.  He has had his seizures for 20 years and NEVER been on medication until this month. They are really making him have lots of icky symtoms.  He has tried the Lamotrigine and the Zonegran so far.  Doc says he wants my husband to be on something during his surgery so he is going to try a different med. very frustrating.  He only has the Partial Complex Seizures.  He cannot communicate or understand language for a couple of minutes and gets tired after.  He is fully aware and consious when having one.

Any pointers or questions we should ask the suergon or your Neurologist are appreciated.  Medicine advice and your experiences are useful.  Advice on surgery and post op and pre op are also needed. I want to be prepared for my hubby. I am the research nut as I learned to be 14 years ago as my son has a rare form of Muscular Dystrophy. I do all the medical research and only looking out for the best interest of my husband and our family.

 

Thank you so much for your help and support through this difficult time

Stephanie V

Re: Temporal lobe surgery

I can relate.  My son will be 2 years old in a week and is scheduled for left temporal lobe surgery on October 18th.  I am so scared, yet I don't have the option to think any negative thoughts. 

Michael began showing signs of seizure activity when he was around one (in hindsight).  In January of this year he saw a neurologists for the first time and thankfully he had an episode right in front of him.  He would stand still and turn his head to the right as if something had caught his attention.  He would do this repeatedly for about 20 seconds and would not respond to us when we called for him.  He only seemed to have them when he was waking up or getting ready for sleep.  The pedi neuro decided on a 23 hour EEG in February.  And of course, when Michael was in for 23 hours he did not experience one single seizure.  Exactly a week later he had his first tonic clonic seizures.  Fortunately my sister cares for him while I work and my husband is in the Army and never home.  My sister completely freaked and of course called me. I then rushed Michael to HM Children's Hospital and called his pedi neuro on the way.  That night was awful..... he had so many seizures after that.  His breathing would slow and I could feel his little body tremble.  Nothing that a person next to him would notice but I couldn't put him down that night so I knew when he was having them.  All the tests, MRI, eeg's & blood work up was done but they found nothing but they began in the left brain & would then generalize throughout the brain.  He was so tired that night.  I know he didn't get any rest.  He stayed in the hospital for 5 days and finally released him with Keppra prescribed and the seizure activity had stopped due to the med.

Exactly two months (May 2009) later we were in the hospital again.  I got that awful phone call from my sister and here we go again to the hopital more tests, bloodwork, MRI, EEG's and another week in the hospital and an addition of Trileptal.  It stopped the tonic clonic but now has absence and head drop seizures. 

 A week after being released from the hospital his pedi neuro added Phenobarbitol (what a nightmare). 

During the hospital stay we were referred to an epileptologist and given the intractable label.  So after a 3 month waitng list to see the ever wonderful, heaven sent epileptologist we have been told that she has studied all of his tests...... and if confident that she can go in and remove the part that is causing all the havic in Michael's beautiful brain.

Is the surgery worth it?  I think so.  I hope so.  I want my baby boy to not have to go through anymore of this.  I hate not being able to make it all better.  I hate feeling helpless so if this surgery can cure him and take all the difficulties that come with epilepsy and with so many unknown reasons why he's having these seizures then I pray that God places his will on his surgeons hands to cure him.

Your angel is 9 yo and can talk to you and tell you how she feels enjoy that and I know she will come out of her surgery with flying colors, just have faith.  I'll keep your daughter and your family in my prayers.  Keep us posted.

  

Re: Temporal lobe surgery

Hi Anne Marie, I had left temporal lobe lobectomy in March 2006 at Westmead Private. I had all the pre surgery testing and video eeg at Westmead public. I had epilepsy which was not controlled by medication  for 44 years, I am now (3 & half years later) completly seizure free and off all medication which my surgeon (Dr Dexter) said would not happen because I was on medication for so long. It is a hard decision but it is a life altering one to and your daughters' life will be better for it. I was given a 70% chance of improvent 20% chance there would be no change to seizures from result of surgery and  a 10% chance that the seizures would be worse. My surgery involved removal of 5 cms of left temporal lobe and partial hippocampus removal.

                   Best of luck to you and your daughter

Re: Temporal lobe surgery

  I saw your letter about your surgery.  It is wonderful when it succeed so well.  You are probably in similar age as I am, Im now 65.  But  10 years ago I went to Mayo Clinic for surgery, and the doctors said it would be 90% sure I could get rid of my epilepsy.  But it did not go that way.  I had temporal lobe epilepsy, and no medicine can help it.  Now I would like to try another surgery, but I don´t know if it is possible.  But it is good to hear about you should get rid of AED, that is one of things I would also like to.............   

Re: Temporal lobe surgery

I'm 64 amd am now being evaluated as a possible surgery candidate.  I won't find out until December, just in time for Christmas.

 

Things have  a lot over the past 10 years or so.  Good luck.

Re: Temporal lobe surgery

Its been 3 1/2 months already since my surgery after going to the MAYO for help--(an early 60th birthday gift)- I've been trying to find other folks here in Alaska that have spent time in Minnesota to go through the same things I did-so far no luck. I do want to let you and any of the others going through evaluation for surgery that I am thinking every positive thing I can to make it happen for you - Looking forward to an awesome Christmas message from you. 

Re: Temporal lobe surgery

Hi Aussie,

 I live in the netherlands and have seizures for 43 years now (20-30 a month). Only the last year they found out that I could be operated. Here in holland you have to find your own doctor because most neurologists will give you medicines for the rest of your life. It is because someone told me to go to belgium and that they are futher with operations. Luckely for my they knew after the first consult that I could be operated, but I still had many research to go. Like MRI, PET scan and now the 25th of january 2010 the last test wich is the WADA test (i don't know if you know it?) It is to determine where your memory and speach is. On the left side of the brain (wich would be positive for me) or on the right side. I also feel two ways. One way says be happy they cán help you, the other says I am terrified how I will come out of surgery. Especially because I have had seizures for so long.

But I read that even if you have seizures for 44 years you can still be seizure free and without medicines? That would be perfect for me, because my doctor told me that the medicines would kill me after about 10 years. So lets think positive and hope that I will do just as good as you have done ;-)

Re: Temporal lobe surgery

I had szs for 36 years before surgery.  I had the surgery 4 years ago, have had ZERO seizures since then and as of March 1, 2010 I am medication free as well. It's never too late for surgery.

 

Re: Temporal lobe surgery

I beg to differ with your doctors, but meds won't kill you in ten years or so.  I'm still alive after 37 years.

 I had my forst seizure in 77, and none until 1990  After having three seizures, each about 5 months, my depakote level was raised to a "toxic" level.  I stayed seizure free for 14 years.  The last several years, my wife and friends told me that started to become sluggusg and would drop off asleep even during the livliest of discussions.  I did have a near fatal outcome and sincess then  have on a varirty of meds  which have not  been too successful.   Now, my regimine has been switched to yet another set of drugs and, knock on wood, they will continue, seven months and counting.  Nevertheless, because I've been on somay types of drug regimine, my neurologist to for eavluation as a possible candidate for surgery. 

I began my testing in May with yet another battery next month.  While my suitability is being evaluated, the recommendation is that if I'm sound to a candidate that I wait nand see the new meds continue.  Then, the need for surgery and its inherent risks would be moot.

 As for side effects from meds, excessive weight gain, premarure hair loss, dangerouly low sodium (trileptal), extremely low blood pressure when it dropped all the way down to 54/34, mental grogginess, loss of memory (I have a hole of about 15 years or so I can recall bits and oieces when something is said that triggers recall of a particular event but my general recall of life over those years is is mostly lost.  I remember little of the years of my children's development from early childhood through their early college years.  Whether or nor not the memory loss is due to seizure or drugs or the seizures,  neither I nor my neurologist is sure since the seizures  or the drugs can cause that to happen   My day to day cognative ability was effected and now, my current side effect is that I am unable to sleep any more than hours per night and find myself tired most days.  Start out tired and end up tired.

 For me surgery is being looked at as a quality of life issue. 

 If I its found that I'm candidate for surgery, I   really know how I'll respond.

Good luck on your journey 

Re: Temporal lobe surgery

I beg to differ with your doctors, but meds won't kill you in ten years or so.  I'm still alive after 37 years.

 I had my forst seizure in 77, and none until 1990  After having three seizures, each about 5 months, my depakote level was raised to a "toxic" level.  I stayed seizure free for 14 years.  The last several years, my wife and friends told me that started to become sluggusg and would drop off asleep even during the livliest of discussions.  I did have a near fatal outcome and sincess then  have on a varirty of meds  which have not  been too successful.   Now, my regimine has been switched to yet another set of drugs and, knock on wood, they will continue, seven months and counting.  Nevertheless, because I've been on somay types of drug regimine, my neurologist to for eavluation as a possible candidate for surgery. 

I began my testing in May with yet another battery next month.  While my suitability is being evaluated, the recommendation is that if I'm sound to a candidate that I wait nand see the new meds continue.  Then, the need for surgery and its inherent risks would be moot.

 As for side effects from meds, excessive weight gain, premarure hair loss, dangerouly low sodium (trileptal), extremely low blood pressure when it dropped all the way down to 54/34, mental grogginess, loss of memory (I have a hole of about 15 years or so I can recall bits and oieces when something is said that triggers recall of a particular event but my general recall of life over those years is is mostly lost.  I remember little of the years of my children's development from early childhood through their early college years.  Whether or nor not the memory loss is due to seizure or drugs or the seizures,  neither I nor my neurologist is sure since the seizures  or the drugs can cause that to happen   My day to day cognative ability was effected and now, my current side effect is that I am unable to sleep any more than hours per night and find myself tired most days.  Start out tired and end up tired.

 For me surgery is being looked at as a quality of life issue. 

 If I its found that I'm candidate for surgery, I   really know how I'll respond.

Good luck on your journey 

Re: Temporal lobe surgery

Aussie,

 

My husband had seizures for 20 yrs and was never on meds.  His suregon is wanting him on some for his up coming brain surgery on March 2011.  Hoping since he has not had meds for so long the removal of the tumor will take away the seizures. Happy to see a good out come for you though, take care and would love some input.

 

My husband  Bryan was diagnosed with a Ganglioglioma Tumor two months ago.  He is choosing to remove the tumor in the  left Temporal Lobe and is scheduled for the 8th of March for a Awake Brain Surgery.  Hoping he will also be seizure free and will not have to take meds.  He has had his seizures for 20 years and NEVER been on medication until this month. They are really making him have lots of icky symtoms.  He has tried the Lamotrigine and the Zonegran so far.  Doc says he wants my husband to be on something during his surgery so he is going to try a different med. very frustrating.  He only has the Partial Complex Seizures.  He cannot communicate or understand language for a couple of minutes and gets tired after.  He is fully aware and consious when having one.

Any pointers or questions we should ask the suergon or your Neurologist are appreciated.  Medicine advice and your experiences are useful.  Advice on surgery and post op and pre op are also needed. I want to be prepared for my hubby. I am the research nut as I learned to be 14 years ago as my son has a rare form of Muscular Dystrophy. I do all the medical research and only looking out for the best interest of my husband and our family.

 

Thank you so much for your help and support through this difficult time

Stephanie V

Re: Temporal lobe surgery

Hello, I had a left temporal lobectomy in 2002 and i have been seizure free since. I have lowered my medications over the past two years and now i just take dilantin 150mg daily. I cant lower them anymore unless i stop driving for a year. I just wanted to ask you if you have felt better since coming off All of your
medications. What sort of seizures were you having and are you working now.
Take care and good luck in the future.
From Jason.

Re: Temporal lobe surgery

It is funny that I come across this forum as I sit in the waiting room of Cooks Children's surgery center during my daughter's second surgery. She had a temporal lobectomy (3/4) in 2007 along with a resection of the parietal lobe and a transection of the frontal lobe.  I can tell you that it did help control the motor seizures for the most part. The only downside was loss of sensation in the left arm and hand which almost fully returned with therapy. She also suffers with short term memory loss and multitasking.

We now are here because the sensory seizures increased in the last two years and the four medications that she is on are simply not helping. They did several new tests including a MEG scan (in Houston) a spec scan and several more video EEGs, they have pinpointed an area in the lower parietal lobe that the seizures are originating from. Her seizures are stemming from a type of dysplasia, tissue that did not form correctly. This time they are going to remove the rest of the temporal and the new area that they located all the way up to the previous resection.

The possible side effects of this current surgery are vision loss (partial) and now we know that it could effect her hearing by removing the rest of the temporal lobe.

It was a difficult decision, this one even more than the first. However, I wouldn't do anything different. My daughter was 13 when this started and is 16 now. She has used just about every medication available and is currently on four. She still has the seizures and it had gotten to the point where the rescue meds weren't even working. She cannot drive or be alone or even take a bath by herself, something she used to love to do. She even had to give up marching band because she can only attend half day at school.

I can't say that it is the right decision for everybody, but it was almost the only one for my wife, myself and my daughter.

The doctors and surgeons here are awesome and really take it personally to help all the patients to get better. I have never seen a more trustworthy and compassionate medical team in all my life. We live in Oklahoma City, but make the three hour drive to Fort Worth because we feel this is where she will get the best care.

I hope all goes well for your child and that this helps them live a "normal life". It is a rough road but it can be traveled. We have lots of family and friends that support us as well as a strong church family. We will keep you in our prayers, please keep us posted.

Michael

p.s. the 29th is my birthday so I am confident all will go well

Re: Temporal lobe surgery

Laura M - we are contemplating surgery for December for my 19 year old son.  I want to wish you all the luck in the world with your daughter's surgery -  I will be praying for both of you!

Re: Temporal lobe surgery

While it took the doctors a year to talk me into having surgery, I can tell you that for me it was the right move. I wish that I hadn't waited- and I had it done in 1985! I honestly think that anyone considering it needs to make sure they get a realistic assessment about the pros and cons. If surgery is the best option and the risks are minimized (like not being the dominant hemisphere of your brain, the trauma being localized, etc.) it is better NOT to wait.  On the other hand, my husband had the surgery and the outcome was not the best. Seizures are still not controlled, it was on the dominant hemisphere and consequentially he has experienced quite a bit of memory impairment. Things that seems to make a difference include the amount of time from the development of the condition to the time of surgery- the longer you go having seizures, the more potential trauma the brain can incur, whether or not the damage is localized, and where the exact location of where the trauma is. When in doubt, consider getting a second opinion. Good luck & best wishes!

Re: Temporal lobe surgery

we are considering surgery for our 19 yo son, diagnosed officially in nov 2009, even tho we determined it prob started in 2007,feel so sad for him, a college soph. this condition is taking his young life away..was a strapping kid excited to go to college, maybe play baseball,still does well in school, but 3 drugs later, complex partials, its time for surgery..please know how grateful we are for this website and people's encouragement.

Re: Temporal lobe surgery

Did your son have surgery? My 19 yo son is prob sitting out next semester at college to domthe left tempotral lobectomy..any thoughts?

Re: Temporal lobe surgery

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Anne-Marie

I can only tell you part of my story, your docs of course are the ones with which you
make the decision.

I am 50 and wish I had not waited for the removal of a scar on my right
temporal lobe.

While not without pain that tapers off, the decision was the right one.  It’s been almost 6 months.

Memory, site,  movement all good.

God Bless

Re: Temporal lobe surgery

Hi Anne-Marie,

As soon as I read your message and discovered your age, I wanted to contact you regarding my surgery.  I'm scheduled to have surgery on my left temporal lobe in June 2010.  I've had seizures since I was about 8 years old.    I didn't have the epilepsy diagnosed until I was 21.   My mother finally saw me have a seizure.  My neurologist began to control the seizures with medication and continued with different meds until I was 35.  At that time he suggested surgery.  I was totally against it but as you stated in your message I wish I had accepted his suggestion. 

I am now 50 years old.  My seizures have continued, I've tried over 10 different meds, my memory is terrible, I have problems with speaking, problems with sleep, etc.  I am very nervous but I feel things will worsen unless I have the surgery.  I'm going to have it done at United Hospital in St. Paul, MN.  I live in a state with great medical facilities but I am nervous that I haven't chosen the correct one.  Everyone thinks that I'm worrying about too many things but they're not going to have this surgery!!

I would really like to hear about your life after the surgery.  When will I be able to go back to work, the amount of time it will take me to somewhat recover, as well as many other things.  I have heard about the pain afterwards but I'm not really worried about it unless I will experience it the rest of my life!

Please help

Thank you,

Gail

Re: Temporal lobe surgery

Gail,

My thoughts are with you I had a right temporal lobectomy when I was 20, now I'm 42.  I also live in Minnesota but had my surgery at Mayo, but most of my work up was at the U of M, but I was only 13 at the time and wasn't ready.  Wish I'd done it sooner.  Good Luck my thoughts are with you.  If you want to talk more e mail dawnwinks@aol.com.

 

Dawn

Re: Temporal lobe surgery

Hi everyone, hope you don't might some input from an Australian patient

My right temporal lobe surgery was done on 18March2010. So nearly 4 weeks since surgery.

Feeling really good just tired and have to restrict domestic activities like lifting heavy stuff.

I'm 47 and has Epilepsy since measles encephalitis at aged 2yrs Simple/Complex Partials.

I'm thinking should have done it sooner but my old neuro was against surgery as a had no tonic clonics.

Did drive up until 10yrs when turns went complex partial.

Apart from huge HEADACHE from surgery everything is good.

Might have lost some leftside vision but yet to be tested professionally.

Maybe just paranoid here.

My neurosurgeon said best to get surgery done before 55yrs due to blood clotting issues.

He said that age is a marking when that can happen during surgery.

I would go ahead with surgery as long as you don't have any other big medical issues that may complicate things.

I was given a horror list of things that can go wrong, stroke...death but the neurosurgical team I had in Melbourne have never lost a patient in over 350 operations.

good luck...........Kris

 

Re: Temporal lobe surgery

 

            Hi,

     Thanks for the message, your message was very helpful to read. 

      I just wanted to know wich hospital in Australia did your Surgery.

      I am an Australian patient and that would help me if you could tell me, I am considering the Austin Health but we have been going no where for a while now.

 Regards,

Omar.

 

    

Re: Temporal lobe surgery

Hi Kris,

I am very happy to read the story of someone who had seizures (just like myself) since childhood. I am from the netherlands so excuse me if my english isn't quit right ;-)  I am now 48 and have had the full range of meds, and in a very high dosis. I still have seizures (before my VNS about 30 a month) now about 12 a month and my neurologist suggest surgery.

I would have been operated already in 2010 but the memory test (WADA) is preformed with barbiturates, and I took three times the maximum of barbiturates myself. I failed the test by just 1 point, and that was a reason to implant the VNS (because without it I wouldn't be able to get rid of the barbiturates) and they started to take off the barbiturates. It took me more than a year, and this year in August they are doing the memory test again, and If the result is than oké I will be operated this year.

So when I become 50 I have a very large party if all goes well (I must say i am afraid of the outcome like being paralized on the left side because they have to take away the hippocampus and amygdala and the last one lies against the part of the brain that if they touch it you get paralized) So happy and afraid at the same time but if i read your story it gives me courage to go on.

With regards,

Silver5

Re: Temporal lobe surgery

How did it go? I had my surgery last week at the Mayo Clinic. Would like to hear how it went. Im still feeling the side effects of the entire procedure, but every day I wake up something has improved. For example, headaches are going away, My sleep is SO much better, and the feelings of anxiety and sadness are fading.

Re: Temporal lobe surgery

How are you now?We are to have surgery left temp lobectomy on son in next few months..he has complex partials, 3 meds dont stop szs..

Re: Temporal lobe surgery

Hello Gail.  I just read this that you had written April 13th.  That was 2 days before my surgery in Rodchestor-almost three months ago and mine was a left temporal lobectomy.  Just checking to see if you have already had it and/or if you still want to hear from us who have had the experience?  Either way--I have lots of positive thoughts for you.  

Re: Temporal lobe surgery

Gail,

 

How did your surgery go? Hope you are better and hopefully seizure free or lessen at least

 

My husband  Bryan was diagnosed with a Ganglioglioma Tumor two months ago.  He is choosing to remove the tumor and is scheduled for the 8th of March for a Awake Brain Surgery.  Hoping he will also be seizure free and will not have to take meds.  He has had his seizures for 20 years and NEVER been on medication until this month. They are really making him have lots of icky symtoms.  He has tried the Lamotrigine and the Zonegran so far.  Doc says he wants my husband to be on something during his surgery so he is going to try a different med. very frustrating.  He only has the Partial Complex Seizures.  He cannot communicate or understand language for a couple of minutes and gets tired after.  He is fully aware and consious when having one.

Any pointers or questions we should ask the suergon or your Neurologist are appreciated.  Medicine advice and your experiences are useful.  Advice on surgery and post op and pre op are also needed. I want to be prepared for my hubby. I am the research nut as I learned to be 14 years ago as my son has a rare form of Muscular Dystrophy. I do all the medical research and only looking out for the best interest of my husband and our family.

 

Thank you so much for your help and support through this difficult time

Stephanie V

Re: Temporal lobe surgery

Laura M -

Ann-Marie, I hope everything went well for your daughter - I've been thinking about all of you constantly!

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