My experience and recomendations, from Spain

Anonymous

Posted 2012-07-29

I would like to share my experience, it's a little bit uncommon (at least in Spain)

I fell when I was 11 years old, and broke my coccyx. They tried all the treatments, but didn't work out, so they removed it when I was 18 (now I'm 33).

After the surgery they told me that it went well, but my pain started to increase, becoming neuropathic pain, and got worst with the years. It becomes worse with stress, with anger, with weather, with anxiety, with everything…

People like me, a young lady, with a stressful job, we live (or survive, and I don't know how to say it) with a very bad quality of life, trying to make a normal life with a lot of daily and strong pain.

So at the age of 23 they start giving me pure morphine and lots of chemicals in the Pain Management units of Madrid hospitals. This treatments made me a junkie and they almost finished my life… 14 pills of pure morphine almost kill my internal organs for all the chemicals in my blood. So young for that and having a normal life.

So I work real hard in order to quit morphine… I succeeded. Now my EVA (scale of pain) is 7 from 10 each day. Sometimes I have 8,5, or even 9. I have to go to bed, lay down, try to meditate and be calmed… All days, since I was a child. I don't remember a day without pain.

The surgery didn't work, as I told you before, so after quitting morphine, I tried a new technique with a neurosurgeon from Madrid (Dr. Paz, in Paz Hospital, Madrid, my recommendation!!!) (see Doctors and specialists in the Spain) in which they make a new surgery and put me 2 neurostimulators in the body (I'm a very tall and thin person, so instead of one, they have to put 2). I'm not a doctor but I can try to explain:

This procedure is this: neurostimulators (made by medtronics) are inside my body with two cables in my back, which go through the hole in the sacrum into the nerves of the spine.

This procedure is made with local anesthesia, you have to be awake in surgery, because they need you to be awake when they try to find out the damage nerves ..... it's uncomfortable to live with them, you can feel them from outside, and touch them if you touch my back…I have problems in the airports, with security systems, and I feel them when I lay down.

But they help me to suffer a little bit less pain, that's a big step. They also have the inconvenience that if you make some movements, the cable would separate from the nerves and you have to back to surgery. Now I have 8 surgeries and waiting for my 9th in November. This is also because I'm a very active person, and I refuse to lie in a bed with the pain. I want to make normal life…my friends called me Frida!!

I would like to add that after trying everything you can imagine and wasting lots of money, this is the best I can do at this time....with this procedure and yoga and meditation is the only thing that help me, combined with some opium medicine, medicinal marijuana at nights and some diazepam in stressful days.

As this pain is very related to my emotions, stress, when I'm sad or tired...., I try to work hard on this, I work on trying to remain calm and not in a bad mood (it's hard to feel happy for one day with this type of strong and non stop pain), on realising that this is a chronic thing and it never end.

It makes you feel like you are a normal person with bad luck, because when they remove the coccyx, usually, everything goes well. Not this time.

But I'll struggle all days, I work so hard with my mind in order to control the pain and bad mood, not to be depressed.... nothing is going to stop me from trying to feel better and live with the best quality way possible for a case like this.

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