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elective brain surgery
Sat, 05/21/2005 - 16:52Hi, my name is Kathy and my twin sister has had epilepsy for 30 + yrs. She has been ok'd for left temporal lobe brain surgery in the near future. Is there anyone out there who has had the surgery or is anticipating having the surgery? I would really like to talk about it. Thanks.
Comments
RE: elective brain surgery
Submitted by kwgreulich on Fri, 2005-05-27 - 10:41
I started having problems by gettting spinal meningitis & hydroencephalytis as an infant. I had taps done through 4 holes in the head repeatedly and then they went in and put a tube that drained the fluid out the left side til the swelling went down. There was a another surgery done in 1958. The doctors told my folks i had 10% chance of survival. they removed 9.5% of the brain, taking it from the right side.
I lived a fairly normal life, making it through college, graduating with honors from UC Berkeley with a degree in Forestry related to Recreation Management and getting a job as a Park Ranger in North Dakota. I then transfered to the US Forest Service. I had my first GM seizure in 1980 and once i learned about epilepsy realized i had been having partial complex seizures as long as i could remember. Yes, at least my early teens. I lost that position because i can no longer drive.
I managed to go back to get another degree, a MS in Forestry, specializing in Silviculture ( the portion of agriculture directly related to trees ). I have now worked for the federal government a total of 28 years.
The winter of 2002/2003 i started having one seizure after another. I had 650 recorded in 6 months. (67 during a 3 day stay in the hospital) I had left temporal lobectomy July 15, 2003. I spent a couple of months in the hospital and for about 3 months had to use a cane to keep my balance. I had three months of other therapy for relearning a lot of things, but am back to working regularily, etc. I was told that if i had not had the surgery a disability retirement would have been needed. Pretests for the surgery showed the right hemisphere of the brain functions at about 10%, yet with the left temporal lobe removed the only problems i have really had that lasted in the thinking is that things i learned in the past few years had to be relearned. I also have a terrible time remembering words & names. For example, in my job i have to be able to identify any plants growing here on the Winema National Forest where i work. I have a 33 page list of species from moss & lichen to graminoids, forbs, shrubs and trees. I had to page through the list yesterday to find the scientific names of 2 of the common forbs we find on the east side of the forest.
Considering the alternatinves, i would much rather work and be productive than sit at home waiting for the next group of seizures.
I started having problems by gettting spinal meningitis & hydroencephalytis as an infant. I had taps done through 4 holes in the head repeatedly and then they went in and put a tube that drained the fluid out the left side til the swelling went down. There was a another surgery done in 1958. The doctors told my folks i had 10% chance of survival. they removed 9.5% of the brain, taking it from the right side.
I lived a fairly normal life, making it through college, graduating with honors from UC Berkeley with a degree in Forestry related to Recreation Management and getting a job as a Park Ranger in North Dakota. I then transfered to the US Forest Service. I had my first GM seizure in 1980 and once i learned about epilepsy realized i had been having partial complex seizures as long as i could remember. Yes, at least my early teens. I lost that position because i can no longer drive.
I managed to go back to get another degree, a MS in Forestry, specializing in Silviculture ( the portion of agriculture directly related to trees ). I have now worked for the federal government a total of 28 years.
The winter of 2002/2003 i started having one seizure after another. I had 650 recorded in 6 months. (67 during a 3 day stay in the hospital) I had left temporal lobectomy July 15, 2003. I spent a couple of months in the hospital and for about 3 months had to use a cane to keep my balance. I had three months of other therapy for relearning a lot of things, but am back to working regularily, etc. I was told that if i had not had the surgery a disability retirement would have been needed. Pretests for the surgery showed the right hemisphere of the brain functions at about 10%, yet with the left temporal lobe removed the only problems i have really had that lasted in the thinking is that things i learned in the past few years had to be relearned. I also have a terrible time remembering words & names. For example, in my job i have to be able to identify any plants growing here on the Winema National Forest where i work. I have a 33 page list of species from moss & lichen to graminoids, forbs, shrubs and trees. I had to page through the list yesterday to find the scientific names of 2 of the common forbs we find on the east side of the forest.
Considering the alternatinves, i would much rather work and be productive than sit at home waiting for the next group of seizures.
RE: elective brain surgery
Submitted by camilla69 on Tue, 2005-05-31 - 05:04
Godmorning Kathy!
I am a mother of identical twin boys,they are now 6 years of age and Ryan started having seizures at 10 mos of age .He was on the maximum of all medications you could think of and at age 2 1/2 he wasnt doing very well.Diagnosed with hippocampal sclerosis of his left temporal lobe he underwent lots of test to make sure his seizures originated from that part of his brain,we were told l.temp.lobectomy would be his opportunity to have much less seizures if none at all and very little medication.Its been 3 years since since surgery and Ryan is a healthy active and very happy little boy that loves playing soccer ,swimming in the pool and has not had one single seizure since his surgery!It is important to do your reserch about the "team that will do the surgery and that the neurosurgen has a lot of experience doing epilepsy surgeries and lobectomies.We consulted with a few different places and decided to go with Dr Dyschowny/Surg.Dr Morrisson at Miami's Childrens Hospital,they did a fantastic job!
We knew going in to this would'nt be easy and we were not promised Ryan would be seizure free,and we never now what the future holds for him,but as parents that love their child you want them to have the most normal life,that they can have a chance living a seizure free life .May God guide you in your desicion and God Bless!
Camilla,fl.
Godmorning Kathy!
I am a mother of identical twin boys,they are now 6 years of age and Ryan started having seizures at 10 mos of age .He was on the maximum of all medications you could think of and at age 2 1/2 he wasnt doing very well.Diagnosed with hippocampal sclerosis of his left temporal lobe he underwent lots of test to make sure his seizures originated from that part of his brain,we were told l.temp.lobectomy would be his opportunity to have much less seizures if none at all and very little medication.Its been 3 years since since surgery and Ryan is a healthy active and very happy little boy that loves playing soccer ,swimming in the pool and has not had one single seizure since his surgery!It is important to do your reserch about the "team that will do the surgery and that the neurosurgen has a lot of experience doing epilepsy surgeries and lobectomies.We consulted with a few different places and decided to go with Dr Dyschowny/Surg.Dr Morrisson at Miami's Childrens Hospital,they did a fantastic job!
We knew going in to this would'nt be easy and we were not promised Ryan would be seizure free,and we never now what the future holds for him,but as parents that love their child you want them to have the most normal life,that they can have a chance living a seizure free life .May God guide you in your desicion and God Bless!
Camilla,fl.
RE: elective brain surgery
Submitted by fins51 on Fri, 2005-05-27 - 09:25
Hi Kathy,
I had surgery on the left temporal lobe just over 2 years ago and I've been happy ever since. I have not had any seizures since. I've gotten my D.L. back. I can also run outside & on the treadmill without worrying about falling (which happened a couple of times). I was scared at first, but now I am sooo happy I chose to have it done. Wish your sister the best of luck.
fins51
Hi Kathy,
I had surgery on the left temporal lobe just over 2 years ago and I've been happy ever since. I have not had any seizures since. I've gotten my D.L. back. I can also run outside & on the treadmill without worrying about falling (which happened a couple of times). I was scared at first, but now I am sooo happy I chose to have it done. Wish your sister the best of luck.
fins51