6 This is my story

This is my story
Hi, my name is Alexandra, I'm 30 years old and I live in Norway. I have been fighting and struggling with pain my whole life. In the last year I was diagnosed with two more chronic diseases that I now have to learn to fight.

I have lived my whole life with spondylolisthesis; it's painful back problem. It is a genetically related disease, and as the article states in the link above, it's defined as congenital spondylolisthesis.

When I was 14 years old, I had a surgery to relieve my back pain that stiffened my 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 more or less with constant back pain since 1996, and unfortunately there is nothing I can do about this chronic problem.

As the saying goes, one problem seldom comes alone; this is very true for me. To relive my back pain I used Voltaren from right after my 1996 surgery until 2007. In 2007 it was discovered that I had gastrointestinal bleeding and strong stomach pains.
It was actually my Mom that saw the connection between the Voltaren and my intestinal bleedings. In 2008 I was diagnosed with esophageal reflux.

Three years later, with quite a 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 helps most people. Well yes most people, but definitely not me! I was told that there was 1 % chance that I could encounter complications as a result of this surgery. I later read that it more of a 10-20% chance of encountering complications as a result from this surgery. And of course, I had to be a part of that statistic.

Despite everything, the acid reflux problem was solved from this surgery. But I got seriously strong and painful spasms in my esophagus, called esophagus spasm. Ironically they solved acid reflux, but with the spasm I couldn't eat or drink anyway.

Nissen fundoplication surgery normally involves 1-2 days in a hospital to recover, but for me it was 5 months! The first two months it was a painful as hell as they didn't' know anything about my situation. Two Botox injections later, my spasm situation got a little better; I could at least eat liquid food and swallow my own saliva. But shortly after the Botox injections, my lung started to get seriously problematic. Turns out 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 by thread while I was in the respirator. My relatives never knew if I was going to live until the next day. But this time, I could say that there were a lot of experts that were helping me. Even though they did use over 1 week to actually figure out what was wrong with me. So they saved my life with this huge lung surgery (they removed the pleura of my right lung). My lung was filled with so much infection, that they had a real challenge to get rid of all that was in there. Why I got this infection in my lung is a big discussion between the two hospitals I was admitted to. Many think that this is not related to Botox injections, but rather the gastro acid surgery (Nissen fundoplication). Anyway one thing is certain; the lung problem was a result of a complication during my hospitalization. As a result of being on the respirator, I lost almost all my muscle mass. I had to start training myself from scratch. This took a really long time.

Despite all of the setbacks, I could say that my situation after the surgery got rapidly better, even the spasms got better. Eventually I could start eating more or less normally. Step by step I increased the length at which I could walk, from a couple of meters to 10s of meters. In March 2010 I got discharged from the hospital.

A couple of months of walking every day, I slowly regained my health. But during my short time at home, my spasm started to reappear. OK, so this time I somehow knew it would come, because the Botox lasts for approx. 4-6 months. So it wasn't this huge surprise. I contacted my hospital to make an appointment for a new Botox injection. Since I (have and) had my spasm so high up in my esophagus, they were really cautious about giving me this experimental solution and considering what I have been through, they wouldn't give me the injection right away. I waited almost 2 months before they gave in. During that time I tried Adalat with no positive effect.
When I did get the Botox injection it went really well. I was out of the hospital same day, and started to eat soft food the day after. Over the next 5 months my life was going really well. I started school, started back training, and most of all I started volunteer work at the Red Cross. 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 in my case at least.
In October 2010, 5 months after the last Botox injection, I got my spasm back. Well again no surprise.
I contacted the hospital again, and this time I made an appointment without any problem.
After the Botox injection at the hospital, everything seemed fine. I was lying in the hospital bed and waiting, just 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 my boyfriend and I fought for my right to stay at the hospital. I could not go home with this kind of spasm, and not without anything to help ease my pain. Eventually we understood that Botox takes approx. 2 - 14 days to spread. So I just had to wait. One month later, the situation is not perfect, and I'm still at the hospital. The situation is better than it was a month ago, at least I can eat soft food, even though it's still painful.
Yesterday the doctor told me that there is nothing else he can do for 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 limit of what I can handle. My lung and back problems are in a totally different pain situation and I can more or less handle. But this spasm is totally hopeless, because it is naturally impossible to avoid what causes the spasm, which is drinking and eating. I need to do that to survive!

All of this is the reason why I starting my blog. To scream out in frustration and hopefully there is somebody else that has experienced with these spasms or knows about them so they can help me live my life with dignity. And of course, after all I now know a lot about the different chronic diseases I have, and I hope I could be able to help other people that may have any of my problems.


  1. http://hp.halsbrann.com/502343/?itemId=314928

  2. takk for interessant lesning, men etter min operasjon mot refluks er jeg iallefall midlertidig kurert for denne sykdommen, så denne artikkelen vil ikke hjelpe meg mye i leten etter medisiner mot spasmene, men igjen spennende lesning.
    stor juleklem alex.

  3. In many cases, a narrowing is treated by inflating a balloon inside the esophagus or by inserting bougies (progressively larger dilators) to dilate the esophagus.
    have you tried it?

  4. Yes I have tried it, and it didn't do much for me.
    But for those who have achalasia this treatment is usually very successful.
    hugs Alex

  5. I have the same condition, and I do the botox treatments every 3 months. It's not perfect and sometimes the spasms still appear, but there doesn't seem to be anything else out there...yet! The pain is terrible, the vomiting is terrible, this condition is terrible. I'm going to try accupuncture next.

  6. I have tried acupuncture about 2 years ago.. It had some effect, but nothing longterm.. only for a couple of days max, bur hopefully will you have better effect..
    Its not a easy illness to have, and it doesn't seem to be to much research out there or underway..
    hopefully something will come up in a few years time..
    how long have you had it,, where in the world are you living? Have you tried anything else but Botox that have had some effect at one time??

    Hugs Alex..