0 2 years and counting

Now it has been two years since I made the mistake of trusting doctors with a surgery that couldn't go wrong.
The nissen fundoplication was suppose to be a routine procedure with the highest risk was not being able to eat for a week.
Two years after, I think, was the reflux my hell or the esophagus spasms?
People always thinks what they are dealing with in the present is the hardest, and most painful one.
But if I would have one week of each disease, I don't know with one I would rather have..
The sick joke of life is that we always want want we cant get, and get what we don't want..
So is that was life is about, gods Sadomasochist ways of torturing us, with our vulnerable side??

I hope that others out there don't have to go through what I have too, I don't wish that on my greatest enemy, not that I have one, but no one deserve to be tortured with pain everyday. It changes you, and not for the better. You become more cynical, less understanding, and more self absorbed.
I wish I could say that I didn't, but when you have been through hell and back again, you don't understand the samll tings anymore. the little fights means nothing, and small problems seems a ways of time.
Hopefully it is just a temporary side effect of being sick. I miss the girl that cared more about others that herself, the girl that would drop everything if a friend was in pain, and the girl that laugh at least 10 times a day, sometimes I could laugh for hours...

0 LINX™

As I have written before, many of my problems started with the Nissen Fundoplication. And until now this has been the only way to permanently relive Acid reflux (GERD).
But now The Linx™ anti-reflux treatment system has become available. There have begun a commercial launch in Europe. And the Linx™ has already been implanted in over 150 patients worldwide.
I think it about time that something else that hopefully will work better, and with fewer complications would come on the marked.

This is implanted with the use of laparoscopic, the same as Nissen Fundoplication. So I do hope that they will have less problems But in the world today, no matter how technological we have become, Surgery is still risky business.
Torax Medical Inc. has received CE Mark certification for its LINX™ Anti-Reflux Treatment system.
Unfortunately is has only been approved as an investigational device in the United States.
But if this is a good solution, we can only hope that Linx™ soon will be approved there as well.
I look forward to follow The Linx™ and to see what this will do to relive the world of Acid reflux.

0 Drugs in different shapes, but still the same

I may seem liberal when it comes to drugs and prescription, but I do think that we should go to a doctor to get prescriptions.
I am actually worried that you know can buy Drugs like Voltarol, same as Voltaren (Diclofenac) without a prescription at the pharmacy. Voltarol should only be used for for three days, it says so in the leaflet, but I highly doubt that most people do that.
And I think that the doctors do prescribes Voltaren to much, and for too long.
A couple of years ago, my doctor was sick so she had a substitute doctor, and he actually wanted me to go back on Voltaren because he meant that it was a drug without big side effects.
But is there a drug without side effects out there? You should only take medication if the positive things about using it overcomes the side effects.

But what do really blow my mind away was this e-mail my boyfriend got today. He could buy Codeine 30 mg × 30 Qty for $ 199.00.
But that was not all, they also sell drugs like Xanac, Valium, Adipex, Klonopin, Ambien, Meridia, Imovane, Restoril Codeine, Ultram and Tramadol without prescription.
I know that this is probably a Spam e-mail, but that is not the matter.
What matters is that you do have to check what kind of products you can take home from vacation, and what products you can order.

There was this older women in Norway who orders some DHEA online. She normally got it from her doctor, but because she was ordering glucosamine , she though she would buy DHEA cheap online. But you have to get this on prescription in Norway.
Most of the product at Drugstore.com is probably safe, but you should always be sure. Its not fun getting the police on you're door because you have bought something illegal.

I do think that there should always be a doctor between the patient and medication. Then you know that the different medication is safe to use together, and if you're health is not improving then they can send you to a specialist, or to the hospital.
I am not saying that doctors are perfect, because they are not, but it is a little safer that way. I know I feel safer that I have health care personnel around me.
I know that my doctor has become much stricter with writing out Voltaren. She is also beating herself up because she advised me to have the Nissen Fundoplication. She has also had that surgery, and she also had some big problems afterwards. But she thought it was only her that could get so sick after the surgery.

6 Nissen fundoplication!

I had GERD (gastroesophageal reflux disease).
 And as some of you know, my road started with the hope of living a more normal life, especially with a hope of a more normal diet and less pain.
And as Orison Swett Marden said:“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow”. This is so true for everyone in the health care system.
I asked the doctor in advance. What could I expect. What was worst case scenario etc. I have always believed that when it comes to surgery, we in society today take it to lightly. And I do know that something can go wrong.
My doctor told me that I had a 1 % chance of something going wrong, and the worst case was that i Couldn't eat for a week.
Based on that I took the chance. And today with the laparoscopic procedure it is even a smaller chance of infection, and a faster recovery time.

And of course everything went wrong. I couldn't eat for 3 months. I was through lung surgery, and I was in the hospital for over 4 months.
When I came home we started to look through the internett. My doctor had never heard of esophagus spasms with nissen fundoplication. I Googled it one time, it took me 5 min to figure out that spasms can occur with nissen fundoplication.
I quote: "Our findings suggest that patients who undergo laparoscopic Nissen fundoplication for gastroesophageal reflux disease are at risk for the development of esophageal motility disorders, including
secondary achalasia and DES (esophageal spasms)."1.I think that says it all..
I quote again: "Other complications in this group included two intra-abdominal abscesses, one pleural effusion, one gastrocutaneous fistula, and one right vagus nerve injury."2.
What is the most disturbing to me. is that my doctors at my local hospital saw a density on my right lung over a month before I was put on a respirator, but they didn't do anything about it.
Even to this day, they try to pin this on the botox, even thought I had the botox twelve days after they saw the density on my right lung. I guess they don't want to own up to giving me a Pleural empyema, and almost killing me.
I think that in a country like Norway they should only do this procedure in one place. This because Nissen fundoplication is a complex procedure, and they requires advanced laparoscopic skills.
Again I quote: "complications are directly related to the surgeon’s experience level."3.  At the hospital where I did it, they only did about ten operations a year. And that is to few!
All and all, I do understand that people out there want to get treated for GERD, and I do know that I am probably a very worst case scenario, and nobody wants to become that!



To read more about Esophageal Motility Disorders After Laparoscopic Nissen Fundoplication:
1.   Secondary Achalasia and Other Esophageal Motility Disorders After Laparoscopic Nissen Fundoplication for Gastroesophageal Reflux Disease.
To read more about Mechanisms of Gastric and Esophageal Perforations:
2. Mechanisms of Gastric and Esophageal Perforations During Laparoscopic Nissen Fundoplication
To read more about the Approach Nissen Fundoplication:
3. A Stepwise Approach to Laparoscopic Nissen Fundoplication

4 Gastroesophageal reflux disease (GERD)!

As I have written before my journey started with me getting Gastroesophageal reflux disease. (GERD)
I had gotten it because I had taken Votaren over to many years.First my doctor put me on Zantac(active substances: Ranitidin), but it didn't have any effect and on this point I had lost 8 kilo.
  I got a gastroscopy and they could see that I had GERD. They put me on Somac (active substances: Pantoprazol) at first, but it had no effect so I switch over to Nexium (active substances: Esomeprazole) and i took 40 mg x 2 at night. It had some effect, but I had to stay on a strict diet for it to work.

So then I had a esophageal ph monitoring, which showed that I had GERD, and a manometry, who showed that I had inflammation in the esophagus, and that i would be a good candidate for the nissen fundoplication.
I was very happy to get rid of the proton pump inhibitors , and the strict diet, and on November the 9 i walked into the hospital, not knowing that what I was about to go through, would be far worse than what I had already been through. Sometimes the medication is the lesses evil!

2 Chat rooms!

I have gotten a few good tips on sites and chat rooms for people with esophagus spasms. I have joined one of this sites, and posted a little bit about myself, and tried to come with some good suggestion.
One if this site is Healing well.com .
Its a very good chat room, and for ones I don't feel that lonely anymore, of course it would be nicer if someone would share a little more on my blog, because then there is at least one blog out there who has gotten all the different medicine, and alternative treatment etc.
The more I read, the more i get to understand that this is a big problem around the world for us that have it, and far to little research on the subject.

I started this blog with the hope that I would meet different people out there with the same problem as I have.
 But I guess its not enough for me. I need somehow to get to the bottom of the wheel.
 I am willing to do anything to try and find different solutions. Because what I have seen is that we all react different to the treatments, and have different degrees of success with the treatments.
If we could find different ways to have more dignity in our life's, it would be a huge victory for us.

I Guess that sometimes we need to realize that the doctor doesn't have all of the answers, and that you have to find them you're self .
And I am going to try to find different things that can help, explain a little more about the different procedures and medicine i have tried.
I do belive I can explain better than I have up to now. I have used this blog as a way of getting my feelings of my chest. its important to get those feelings out, and not hold on to them.They will make you go crazy if you don't deal with the mental pain. And having so much pain for so long, it would almost be strange if I didn't need help.
We need to not look down on people with mental illnesses, because its a diseases on the same page at physical pain, and studies have shown that approximately 40 percent of women, and 30 percent and men gets depression at least once in their lifetime.

I have one more link. Its a girlfriend who is trying to get some help and understanding about her boyfriends problem. She calls it Nissen Nightmare.
This is also about acid reflux witch I used to have.
So if some of you want to know more, just write to me, because I know a lot about this topic.
I had reflux for approximately 4 years, and that was a hard road to walk on, and I thought that a nissen fundoplication would make everything better, but as I have said previously that surgery is what trigged the esophagus spasm.
I would say to anyone who is thinking about Nissen to think twice, because research have shown that approximately 10-20 percent gets side effects from the surgery, and not 1 percent as they said to me.
And in my case the side effects gave me a new chronically disease, and one acute disease when I got that infection in my lung.

0 Welcome to my blog

Hi, my name is Alexandra, I'm 30 years old (2011) and I live in Norway. I have been fighting and struggling my whole life with pain. The last year I got two more chronicle deceases that I now have to learn to fight.
That basically my story.

 I have lived my whole life with spondylolisthesis, its painful back problem. This is a genetically related disease, and as the article say its defined as congenital spondylolisthesis.
When I was 14 years old (1996), I had a surgery to relieve my back pain situation. They stiffened L3 to L5 vertebra's.
Due to this surgery many nerves got squeezed, so my situation got eventually 10 times worse.
I have been living with more or less constant back pain since 1996, and unfortunately there is nothing to do with this chronicle problem.

Some says that one problem seldom comes alone, this is so true for me. To relive my back pain I used "Votaren" from right after my surgery until 2007. At this point I had gastrointestinal bleeding and strong pain in stomach.
It was my mom that saw the connection between the Votaren and my intestinal bleedings. Due to this I got the diagnostic esophageal reflux  in 2008.

Three years later with quite strict diet and large amounts of Nexium I finally got approved for a reflux surgery that would relive my acid problem. This surgery was Nissen fundoplication, a surgery that help most people. Well yes most people, but that is definitely not me. I got told that there was 1 % that encountered complications as a result of this surgery. Well even tough I have later read about this, its a lot more complications as a results from this surgery, like 10 -20 %. And of course I had to be a part of that statistic.
The reflux acid problem was solved from this surgery, but I got seriously strong and painful spasm in my esophagus.
Ironically they solved acid reflux, but with the spasm I couldn't eat or drink anyway.
This surgery normally involves 1-2 days in a hospital to recover, but for me it was 5 month.
The first 2 month it was a pain hell where they didn't' know anything about my situation. Two botox injections later my spasm situation good a little better, I could at least eat liquid food and swallow my saliva. Short time after the botox injection, my lung started to get seriously problematic. I had developed a pleural empyema / lung abscess. My situation was so serious that they had to put me in a respirator. My life was hanging in a thin thread while I was in the respirator, and my relative never knew if I was going to live to the next day. But this time (only), I could say there was a lot of experts that was helping me, even tough they used over 1 week to figure out what was wrong with me. So they save my life with this huge lung surgery ( they removed the pleura of right lung. ). My lung was filled with so much infection, that they had a real challenge to get rid of it.
Why I got this infection in my lung is a big discussion between the two hospitals I was inlaid in. But many think this is not related to botox injections, but rather the gastro acid surgery (Nissen fundoplication). Anyway one thing is certain that this lung problem is a result of a complication during my hospitalization.
As a result of the respirator, I lost almost all my muscle mass. And I had to start training from scratch. This took really long time.

But I could say my situation after the surgery got rapidly better, even the spasm got better. Eventually I could start eating more or less normal. Step by step I increased my length I could walk, from a couple of meter to 10's of meters. In march (2010)  i got discharged from the hospital.

A couple of month with walking every day, I slowly regained my health. During my short time home, my spasm started to reappear. OK this time I somehow knew it would come, cause the botox last for approx. 4-6 month. So it wasn't this huge surprise. So I contacted my hospital to make a appointment for a new botox injection. Since I (have and) had my spasm so high up in my esophagus, they were really cautious about this for this is experimental and considering what I have been trough they wouldn't inject it right away.
I waited almost 2 month before the gave in. At that period I tried "adalat" with no effect.
The botox injection when really well. I was out of the hospital same day, and started to eat soft food the day after.
During the 5 next month my life was going really well. I started at school, and started training, and most of all I started volunteer work at the red cross organization. I was really happy how my life was going. And finally I could start living the way i wanted to live.

But unfortunately happiness is never lasting, well thats my case.
In October (2010), 5 month after last botox injections, I got my spasm back. Well again no surprise.
I contacted the hospital again, and this time I made a appointment without any problem.
After the botox injection at the hospital, everything seemed fine. I was laying in the hospital bed and just waiting, like last time. Suddenly one hour after the injection a seriously painful spasm started. Since the spasm "shouldn't appear", the doctor wanted to send me home right away. But me and my boyfriend, we fought for my right to stay at the hospital. I had nothing to do at home with this kind of spasm, and without anything to ease my pain.
Well eventually we understood that botox takes approx. 2 - 14 days to spread. So I just had to wait. One month after (today), the situation is not prefect, and I'm still at the hospital. The situation is better than a month earlier, at least I can eat soft food, even tough it's still painful.
Last day the doctor now told me that there is nothing else to do with me. My medical situation is not possible to fix. So now they are trying to find the right painkiller medication so I can handle this situation at home.

The spasm situation is my top point for what I could handle. My lung and back problem is in a totally different pain situation that I more or less can handle. But this spasm Is totally hopeless, cause It's naturally impossible to avoid what causing the spasm, drinking and eating.

This is the reason why I starting my blog, to scream out in frustration and hopefully there is somebody else that have experiences about spasm that could help me live my life with dignity. And of course after all I now know a lot of thing about the different chronicle diseases I have, and I hope I could be at help for other people that have any of my problems.