Kris's Story

 
 

I am a 47 year old male, I work in IT  involving sitting all day long,  and in my free time I was a avid cyclist and runner .I often ran more than 50 km a week and cycled  250 km in one week.Everybody should say ..you are very healthy . right ??

I remember the first time I felt ‘ it ‘  was almost 7 years ago in the beginning of October 2004. I still remember the date as the feeling has never left me since then. I first felt it when getting up from a normal (hard) chair and also a few hours after another bike session .It was a strange feeling under my left buttock. A feeling I never had, .. a stabbing painful thing, cold and warm sensations.I found out, and the onset was very sudden, that I couldn’t sit anymore for any time like + 15 minutes .. Strange as I never had any problem at that location.The first days I thought it was a minor issue and tried to keep on cycling, but after a few miles I found out that the pain was just to bad to continue. From then on I stopped cycling completely .I also found out soon enough that I couldn’t sit on a normal chair anymore, and had problems sitting in my car,
 So the long search (almost 3 years) began to find out what exactly was wrong .
I first went to a sport – doctor who operated on me for bursitis and did a hamstring release, after a lot of steroid injections .Of course the surgery didn’t help as I already expected, because the top of the hamstring is about 5 cm from the place where my pain is situated.
Then I tried nerve blocks which had a very temporary effect.Also heating (Rhizomy) the nerve didn’t have any real result for my pain.I also went for physical therapy for almost a year but the result was… I couldn’t sit!! I then found this website and did some investigations myself.
 I collected success and failure statistics and found out that the last option, PN decompression surgery, was risky.Especially for me, because although I couldn’t sit, it was the ‘only ‘ problem I have .If I read this now it sounds like it wasn’t so bad but it was!The pain when I sat down was so big I couldn’t concentrate on my work anymore. Working became impossible and a real torture.
However, most PI members have more issues and I found out were worse than I was , even if I couldn’t imagine then how that would be possible as by this time I was very, very frustrated with it ..
As time moved on I learned that although sitting was making my pain worse over the day, it didn’t make my overall pain worse either! So how strange it may sound, I became less stressed with it knowing just this.

I went to Dr De Bischop in France and he also thought I had PNE.I also went to another doctor, Dr Beco in Belgium, and he confirmed that I had PNE, he recommended surgery but I thought the risk of getting worse by decompression surgery was too big for me at that time.

I found out that although there are people who did get better by this surgery, some got worse. And of course the more things you are still able to, the more you have to lose I thought.
Doctor Beco said to me that it was best not to sit for a long time after surgery anyway, so this didn’t sound as a good way out to solve my problems anyway because of my occupation.
I then found out that neuro-stimulation is another option. I also found out that this doctor was radically against release surgery so it confused me even more.I then saw Dr JP Van Buyten in Belgium and I opted for the option of neuro-stimulation, because if this doesn’t work the doctors could undo it. In the meantime I kept on searching for a solution to sit at work, which was my biggest worry. I was fine when I didn’t have to sit, like on every weekend. But in a normal life, most days I was shattered at 11 o’clock in the morning, because I had to work.

While being on the waiting list for neuro-stimulation, I discovered that driving in a camper van was something I could do for a longer time (2 hours) without too much pain .After sitting in that for a few days without sitting on something else and of course limiting the sitting time altogether I felt usually much better.
First I thought it was because of less stress or being in another environment, or so because typically the pain subsided over at least a week and a worse seat doesn’t bring more pain instantly ..
  I had tried about 15 different chairs at the office,I even tried standing for the whole day, lying down etc.
I have tried Lyrica . With the pills I could sit a little longer, but I had to take so much of them that I couldn’t concentrate because of the side effects of the medicine.

So I investigated this car seat very carefully and found out that the shape of the top of the chair was the most important.The top was firm enough to support my weight, without leaving any pressure in the middle, which is where my pain is. A racecar chair that is a bit too small is the best description.So I bought some extra car chairs just like that and with them I built a few chairs for the office, at home and I even made them a bit better by removing some material from the middle and making the sides firmer.

By the time it was my turn to try the neuro-stimulation I postponed it for 3 months and again and then cancelled it altogether.This was because I then could sit for 3 or 4 hours in a row without too much pain.Because evolution is so slow and it was a wavelike pain anyway, it took a lot of time before you could even say for sure something was happening.
 I can sit now for almost a full day, without too much pain. Sure I can feel it at the end of the day but it is milder than it ever was.
Sitting on a ‘normal’ chair for an hour or so gives back the pain like before. If I stay careful on the other hand I feel that my tense and painful muscles relax as time goes on, and that alone makes the pain less . It is then less worse if I have to sit for social events and places where I cannot control the ‘sitting gear’  but honestly, I still try to avoid as much sitting on ‘other chairs‘  as I possibly can.
I have the feeling that over the past 2 years I am beginning to get better, very very slooowwly .
 I once had a pain therapist that told me that the problem would settle if I am just patient enough .
When I asked him how long that would be, he responded … “about 10 years, because in the end your nerve will give up and not grow where the damage is”I was frustrated with this answer at the time, but now I think, that this guy could have been  right ..
 So, I think for my problem I made the best choice by not having the decompression surgery.
I’m absolutely sure I got it from cycling so I would say to others … use those padded cycling shorts before you get it, (I never did ), get a softer seat if any exists BEFORE you feel any pain ..And ….Don’t overdo anything.
 Now I ride a recumbent bike which I can use for hours as there is no pressure on my buttocks.I use a special car (TWIKE) as most cars still bring me pain.
 I realize that my case differs from what many people have to endure but I also think that there is a risk of jumping into serious surgery too soon.
My advice would be If there is ANY chance of getting your life back without surgery, try that first, as the surgery is certainly no picnic, and certainly also something that takes a lot of time.
 Kris