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SeekingHealthy
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« on: May 28, 2010, 07:07:10 PM »

Not sure if this is the place to post this.  And definitely not meant to worry anyone.  I just think it is a good idea, no matter how small the percentage of people who are effected by WLS with these types of conditions, that everyone knows that, as with any surgery there are risk.  Some doctors may not mention all of them or some doctors just may not know.  Statistically the larger percentage of people who undergo WLS do fine.  But since this is not the first time I have heard about this thought I would post as a point of interest for those researching.
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[OSSG-gone_wrong] Seizures after gastric bypass
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marykubishta
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To Whom it May Concern:

My name is Mary Stockton-Kubishta and I am trying very hard to get my story out in the public. My story is not unique unfortunately there are many like me and we are being shunned and told that there is nothing wrong with us. Its like we are the red headed step child of the gastric bypass community. There are many stories like mine, but I refuse to lay down and die. I refuse to let people continue to get this surgery without all the facts. So here is my story:

It was February 8th 2008 I was beyond excited to begin my new life, with my husband by my side I was wheeled into the operating room. While I was under anesthesia I dreamed about how wonderful life was going to be, about how I was going to be able to be normal for once in my life. How I would no longer be the "FAT" girl. When I woke up I was in a lot of pain and very out of it, however I was still very excited to begin my journey and new life. Before the surgery I did not just jump into the pool of gastric bypass, I did much research about side effects and about how my life would change. How I would have to take many vitamins and drink protein drinks and make sure I got enough nutrition to maintain a healthy life. I went to a six month nutrition class to see if I could lose weight the old fashion way by dieting and exercising. I talked with a counselor to make sure I was making the right decision for the right reasons. I even under went a mental evaluation to make sure I was of sound and mind and able to handle the changes my body was going to make. I was very prepared for everything (so I thought).

After approximately ten months to a year I had passed all the tests and jumped through all the hoops and was able to have the surgery. My husband was very supportive and excited for me. When I was released from the hospital all was great, I was a model patient no problems with anything, I was able to return to work after approximately 3 weeks. So lets fast forward to May 8th 2008, I got to work around 12:00pm was talking with my co-worker about that days events so he could go home. But all of a sudden I told him something was wrong, I didn't know what it was so I asked him to wait before he left, I didn't want to be alone I could tell something was wrong. I felt very light headed, I smelled pine sole, and I had this very strong déjà vu feeling. The next thing I knew I woke up in the ER (good thing I worked in a hospital). I was very scared and didn't know what was going on. They kept telling me I had a seizure and hit my head, that I was going to be okay. I wanted to know where my husband was, he was my rock and I needed him. They said that my co-worker had called him, but I needed to talk to him myself. I grabbed my cell phone to call him but I couldn't remember his cell number, I tried to use my phone book in my cell but I could not work my cell phone. I started screaming and yelling, something was really wrong, how could I not know my husbands number.

The ER ran many tests and did a MRI and found nothing, I was perfectly healthy according to all the test they ran. They sent me home and I was put on a medical leave of absence from work. I went to a neurologist and he ran another MRI and a EEG he put me on Keppra a anti-seizure medication. After all the results came back he said everything was normal, it must have been a fluke accident and he sent me back to work. I kept seeing my primary doctor because I began having major headaches. I could not get them to go away. Going to work was very hard now because I lost my license do to the seizure. I had to be seizure free for six months before I could get it back. I went to my gastric bypass doctor and he shrugged it off and said it had nothing to do with my surgery, he then said everything was great and sent me on my way.

After being back at work for about a month things started to go down hill, I had migraines that wouldn't go away, I had muscle spasms that prevented me from doing my job accurately. I went to my primary doctor and he said that I needed to go back on a medical leave of absence until we figure out what was wrong. I was scared because my job was a big chunk of our income, and it supplied our insurance, not working meant no insurance. But, my husband said don't worry we will get through it. A week after leaving my job I had yet another seizure, however it was worse than the first one. I feel in my garage cut my head open and was laying in a pool of my own blood. My mom called a ambulance and they took me to the hospital. Yet again tons of test that revealed nothing. I went back to my neurologist and he put me on another med called tegrotal. Then he discussed the possibility of my seizures being connected to my gastric bypass. I was in shock that idea had never even crossed my mind. I went home that night made a appointment with my gastro doctor and started doing my research on the web.

Much to my surprise I found many people that had the same issue that I was having. They had the gastric bypass and all of a sudden out of the blue started having seizures. I was in disbelief, how could this be happening to so many people but not be listed as a possible side effect. Why was I not aware of this before the surgery? I was at a loss and couldn't wait to talk to my gastro doctor to find out what the hell was going on. I was beyond pissed that my new life was destroyed. When I got to the gastro doctors office with my husband we started asking him many questions about seizures and gastric bypass. My doctor looked white as a ghost and told me and my husband to LEAVE and NEVER come back. I was in a state of disbelief, what did I do wrong why was he refusing to see me ever again? I got up and left his office quietly and my husband and I talked the whole way home. We decided we where not going to give up with out a fight, but how do we fight when we have no proof. I started by doing research and talking to as many doctors and nurses as I could. However, without insurance it was very hard to get tests done.

On September 25th 2008 I had another seizure, at this point we where trying to rule out low blood sugar as the cause and my husband checked my sugar levels during the seizure, it was 88. There for it had nothing to do with hypoglycemia. When I woke up I had my children all around me crying and the paramedics asking me tons of questions that I could not answer. They took me to the hospital once again and they ran tests again and once again found nothing.

I tried everything to get insurance but I couldn't because we made to much money in the states eyes to get insurance. So I just dealt with life as it was handed to me. I had nothing else to loose so I took to the internet and made a video on u-tube. And much to my surprise I got a lot of people responding to my video. I even got in contact with a lady that worked with BBC, she wanted to do a documentary about my story for BBC. I thought I was finally going to get the word out and make sure people know what they are getting into. I needed to make sure people understand what it means to your life if you have a seizure disorder. I had yet another seizure on November 17th 2008, I was beginning to get furious. I decided against medical advise to stop taking my anti-seizure meds. At first it was really hard because the muscle spasms only got worse. I also started experiencing a loss of feeling in my right leg near my foot. I went to my primary doctor and he said I needed to see a neurologist as soon as possible, but I didn't have insurance and could barley afford to pay to see him.

Around Christmas time I lost it. I was wrapping a gift for my oldest son, it was a Nintendo DS game, and right on it in big letters it said "WARNING MAY CAUSE SEIZURES" how can a game warn you about possible seizures but a major surgery can't. I was still off my meds and doing as well as I could, I was still trying to get my story out and the BBC thing wasn't as big as I thought. It only played in England, not in the US. So lets spring forward to the next seizure February 24th 2009, I was told I had to go back on my seizure meds and was still on my pain meds for headaches due to the head trauma I seemed to have approximately every two months. I needed insurance because I was now having problems eating and I looked like death warmed over.

I left for Oregon with my youngest son and got insurance through the state there, because I had no income and I didn't live with my husband so I didn't have to count my husbands. I started seeing doctors again and trying to get help. They ran the same tests that they had here in California and got the same results no cause for seizures. They found the problem for me not being able to eat and fixed it right away. I continued doing everything the doctors asked, but never got a solution. I had my 8th seizure on June 3rd 2009, I didn't go to the hospital this time because it was a waist of time and tax payers money. I was ready to give up what was I fighting for? Nobody could find anything wrong, I was perfectly healthy (except for the fact that I was loosing weight faster than I could take a bath, and I was having seizures like ever other month, had muscle spasms that would not go away, loss of feeling in my right leg, and oh yeah chronic headaches). I left Oregon and came back home to California because I needed my husband and my children, my mom came with me to baby sit me and help take me to doctors appointments.

On July 31st 2009 I had what my husband and I like to call a episode because it wasn't a real seizure. I sat on the edge of my bed unresponsive chewing on my tongue and rocking back and forth when I came out of it about ten minutes later I had lost about six months worth of memories. I was so scared I didn't understand what was going on and everything my husband was telling me made no since to me. He told me I was helping my sister move to Oregon and I flipped out. I had no idea what he was talking about, he took me to the ER and they ran tests and everything came back normal (of course). After about three hours the memories came back. I still suffer from short term memory loss to this day. I have to write lists so I don't forget what I need to do that day.

I finally got insurance through the state of California and found a doctor that seemed to be the answer I was looking for. When I told him my story he was so excited, he said I was the reason he went to medical school and became a doctor. He loved the unsolved mystery of health problems and was going to get down to the answer. He said he was positive that it was connected some how to my gastric bypass.

I continued to have seizure after seizure, September 3rd 2009, October 6th 2009, November 21st 2009, then it changed. My doctor lost all faith in me, all because I was putting up Christmas decorations and spilled a box if ½ inch no head nails, and apparently some of them got into my cup of soda. I was drinking my drink and felt something in my throat, I ran to my husband choking and trying to get them to come up. My husband smacked me on the back unfortunately the didn't come up the went down. I went to the ER immediately because I knew I had swallowed something but didn't know what. Then they told me I had swallowed two nails, and that because they were so far down in my digestive tract it looked as if I had swallowed them a while ago. I tried to explain that I had a gastric bypass and I digest things a lot faster than the normal person. I didn't have to have surgery or anything I just had to stay in the hospital until I passed the nails. I did have a psychologist come and talk to me to make sure I had not swallowed them on purpose ( yum nails lol). She concluded that I was of perfect sound and mind and that it was a accident, however my doctor was not as sure. He lost all faith in me and started to accuse me of having Munchausen's disease, he started to say that I swallowed the nails on purpose and that I was faking the seizures. So I did everything I could to prove to him I wasn't. I told him I would yet again get a mental evaluation, and my husband recorded one of my seizures. He refused to send me to a psychologist and refused to watch the video.

I started having seizures every month. Around the same time of month, January 25th 2010, February 24th 2010, March 23rd 2010, April 21st 2010, and the last one May 22nd 2010.

My life has changed due to this surgery, but not for the better. I went from a healthy 334lbs woman to a very unhealthy 165lbs woman. I lost my job, my drivers license, my ability to be alone, almost everything. People need to know that this is a possible side effect of the gastric bypass and what having a seizure will mean to there life. It isn't just a seizure o'well, it is life changing. My dream of not being the "FAT" girl has been realized, however I am now the "SEIZURE" girl. Please help me get this information out there. People deserve to know all the information before they embark on this life changing surgery. This surgery is gaining everyday in popularity and these people don't have all the facts. Help me give them the facts that I know are being withheld.

I know this is a long post but I need people to e-mail me if they have experianced unexplained seizures after there gastric bypass. One voice is loud but many voices are HEARD!!!!!!!!!!!!!!!

Thanks for listening
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berrigirl
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Surgery Date: March 31, 2004
Surgery Type: Open RNY
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« Reply #1 on: May 30, 2010, 08:51:07 AM »

Maybe you should post this over or contact Meltingmama.net cause she has seizures all the time and people have posted about how they have them and all...I'm glad that my doctor got me on Glyset to control my blood sugar otherwise I'm afraid I would have seizures...It's sad to say but it's so common experience for people...This just proves that there is a link between Gastric Bypass and Seizures once again...

Berrigirl
www.bariatriccommunity.com
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SeekingHealthy
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« Reply #2 on: May 30, 2010, 04:11:10 PM »

Maybe you should post this over or contact Meltingmama.net cause she has seizures all the time and people have posted about how they have them and all...I'm glad that my doctor got me on Glyset to control my blood sugar otherwise I'm afraid I would have seizures...It's sad to say but it's so common experience for people...This just proves that there is a link between Gastric Bypass and Seizures once again...

Berrigirl
www.bariatriccommunity.com

Hi Berri girl,

It is sad and I am hearing more about it with gastric bypass patients as well.  Can you tell me what you experience when your blood sugars drop low?  There are times when I have occurrences or episodes as I call them when I start feeling light headed, my brain starts getting kind of "fuzzy" and I get weak.  I am not sure what it is but know that if I don't do something quickly I will pass out.   Seems once I eat a protein bar or a food with protein in it I recover quite quickly.  Sometimes it can be any food will snap me out of it wether it has protein or not.

I have read Melting Mama's blogs and website.  She has incredible strength and my heart goes out to her and the issues she has had.  I just watched a youtube video from her where she had one (a seizure) while driving and ran into a tree.  Thank goodness that her child or herself were not more seriously injured.
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berrigirl
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Surgery Date: March 31, 2004
Surgery Type: Open RNY
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« Reply #3 on: May 31, 2010, 07:30:29 PM »

Well my sugar was dropping really low into the 40's and my experiences was dizziness, feeling out of body, passing out etc..So I went and saw a Endocrinologist and they put me on Glyset and now it goes high and low and it's a weird experience cause I can't think of words or my speech is off...

It's really scary that not one doctor is saying that GB and Seizures are related...It's like how closed minded are you...

Berrigirl
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SeekingHealthy
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« Reply #4 on: June 01, 2010, 04:19:32 PM »

Well my sugar was dropping really low into the 40's and my experiences was dizziness, feeling out of body, passing out etc..So I went and saw a Endocrinologist and they put me on Glyset and now it goes high and low and it's a weird experience cause I can't think of words or my speech is off...

It's really scary that not one doctor is saying that GB and Seizures are related...It's like how closed minded are you...

Berrigirl

Wow that is scary!  You are incredibly strong!  IMO the doctors won't admit there's a connection because 1, wls is big money and 2, it could mean lawsuits and we do live in a litigious society unfortunately. 
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minifyk
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Surgery Date: October 11, 2010
Surgery Type: Roux en Y
From:: Kansas City
Posts: 211



« Reply #5 on: August 19, 2010, 07:43:28 PM »

Mayo has an article that discusses this issue. The link is below.

http://www.mayoclinic.org/bariatric-surgery/complications.html
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greebo115
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Surgery Date: 08/08/08
Surgery Type: RNY Gastric Bypass
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« Reply #6 on: August 19, 2010, 10:39:53 PM »

That was really interesting  thanks!
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auntb
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Surgery Date: 8-25-09
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From:: southeast michigan
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« Reply #7 on: August 20, 2010, 01:10:16 AM »

Now this is just IMHO. I have worked with people that have seizures for more than 25 years. Seizures are "caused" by all kinds of things and start up in all kinds of people for all kinds of reasons. We all have a Seizure Threshold most people never cross it but all kinds of things can make you cross it especially if yours is low. Some but not all are - drugs, emotinal upsets, illness, nutritional imbalances, surgery,.............. There are no tests to tell where your threshold is. I'm sure that WLS can cause seizures for some  with all the changes to out bodys but then so can alot of other things it is hard to pin down. One old school nuro Doc put it like this - all of our brains are like the dials on cartoon boilers with the red zone most of us never get there but some cross over into there she blows.

Yes I feel for those that have seizures it is a terriable thing to have. And to have a Doctor that is unwilling to help is worse. Keep looking for a good Doctor please.
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Indykitty
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« Reply #8 on: August 20, 2010, 04:42:35 AM »

I had read this article before and felt so bad for the woman.  My mother had seizures from emotional upset (severe anxiety) and drug withdrawals from the time I was really little.  They were grand mal and she was not treated well by doctors because she was "crazy" by their standards - she was also bipolar with schizo-affective disorder.  Thanks for mentioning that Auntb. It's good to know that it is recognized now that there are many reasons a person can have seizures.  Back then they just thought it was caused by epilepsy or that she was faking for attention.  My dad thought the later... and at the mental hospital they'd just lock her in solitary and let her seize without any help at all. 
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Keilah (sounds like Sheila)<br /><br />High 322, Low so far 162.8<br /><br />


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auntb
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« Reply #9 on: August 20, 2010, 09:03:18 AM »

Good Dr.s are hard to find but they are out there. Our brains run on electrical impulses and we all know what happens when you overload a circuit POW BAM WOW. The problem is that all medicine is an art as well as a science and is only as good as the practitioner. Neurology is much more an art. Just like there are better electricians for different problems same is true here. Shop around until you find the right one. And NEVER settle for a Doctor that treats you as anything less than the most important person on your team.
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Maddie
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« Reply #10 on: August 20, 2010, 01:24:35 PM »

Keilah, how very sad and frightening that must have been for the whole family.  I am so thankful that the medical community has evolved.
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Indykitty
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« Reply #11 on: August 23, 2010, 05:44:02 AM »

I am glad the medical community has progressed too, but it wasn't in time for my mother.  She passed away in 2002, sadly from the combination of her psych drugs and pain patches. The last time she called for an ambulance because of chest pains they guilt tripped her about who was going to pay for it and did not take her and she decided not to go.  She was dead a couple of months later. 
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Keilah (sounds like Sheila)<br /><br />High 322, Low so far 162.8<br /><br />


Keilah Kay (Sells) Folkertsma on Facebook
jbridgetfisher
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« Reply #12 on: September 16, 2010, 05:34:00 AM »

I too suffer from seizures and am so pleased to learn that I have 2 other resources that I can check out. Mine began approximately 3 months ago, one was a full blown grand mal seizure and the other was an epileptic seizure.

Luckily for me Dr's are speculating it is from low sodium. I have been hospitalized 3 times in the past year for low sodium. So I am on a super high sodium diet (cuz there arent supplements for that) I cant drink water, I have to drink Gatorade or other drinks containing excessive sodium. Again, luckily I have been able to maintain my 130 weight loss ( I am over 6 years post op).

Unluckily, I am on unemployment, I have 2 kids and don't qualify for medical assistance so I am without medical insurance. I live in PA. Like the original author, I too am taking things as they come.

Back on a lucky note, I have not lost my drivers license, but I rarely go anywhere alone. I believe my PTP hasnt reported me to the DMV or PennDot, because he feels it's associated with low sodium.

For me, before my seizures, I have no warning. I do get symptoms of low sodium that I use to ignore as just 'aches and pains" but I am more conscious they are apart of a trend. Headache, burning muscle pain-especially in my legs to name a few. I would dismiss that pain because I also have Degenerative Disc Disease at 4 levels of my spine and a herniated disc in my neck and in my back. Dr's as well as myself were assuming this pain was apart of sciatica.
I also start to get really slow in my thinking, people say I resemble a "drunk person". I begin to lose my memory, loss of words, slurring speech and I cant walk straight.

At the hospital they did a MRI and saw sounds of an autoimmune disease, I hope this is a result of my thyroid.

Since WLS I have suffered from both hyper and hpothyroid. I was misdiagnosed for years because of weird TSH and T3 T4 tests. It wasnt til I worked for a ENT Surgeon, he got on top of it. I hope the autoimmune disease is hypothyroidism, and that with that irregularity it is also messing with my thyroid, as irregular thyroid is involved in the process of sodium release.

So that's my seizure story. I am looking for others as well who share similar experiences as mine.
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Kate
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« Reply #13 on: June 17, 2011, 06:05:09 AM »

I think there are a lot of us out there who are silently fearful of seizures and blackouts caused by hypoglycemia post gastric bypass. 

First off, let me say that no matter what I'm going through now with my blood sugar, I'm a lot happier than I was at nearly 400 lbs.   I'm struggling with diet that balances my blood sugar while keeping my weight down.  And I've heard from other bloggers that this is a HUGE factor in weight regain for some WLS patients.

I've had my blood sugar drop into the low 30s, and it's not unusual for me to be in the low 40s during the day or dropping that low over night.  I now carry sugar tablets with me everywhere, as well as protein bars. 

Sure there are times I have to take in some sort of corrective food during the day while i'm out and about.  The difference to me is that now I'm actually OUT AND ABOUT.
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HopenToBeThin
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« Reply #14 on: June 17, 2011, 08:57:19 AM »

I have not had any seizures thank God, but dizzy is a normal state for me even at two years out.  I do not know if I have a sodium issue, but I do know that if I drink at least one 32oz powerade zero a day, I feel better.  So propel and powerade are a daily intake for me now.
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Paula
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