Hi everyone
Am I glad to have found this forum! It feels amazing to finally find others that can understand my pain and share their own experience of what it feels like to be suffering with this awful, unrelenting back condition.
I was diagnosed with hypermobility syndrome in May 2009 after suffering with lower back pain for a number of years, and was advised back then to get my body into fighting fit condition as having such laxity in muscles and ligaments coupled with shallow joints could only mean one thing, injury and lots of it! I took on board all the advice that was given to me and launched into a new regime of non-impact exercise and healthy eating, I found a brilliant yogalates DVD (a combination of Yoga and pilates) and for a year and a half I was at my fittest and was healthier than I'd ever been. During this time, I became pregnant and in September 2010 I gave birth to a healthy baby. I stopped exercising during my pregnancy, mainly because I wasn't sure whether it was safe to continue. Only a few days after giving birth, I experienced my first bout of numbness in my right foot. I told my midwife who seemed baffled, my labour had been pretty straightforward, I had a water birth and only used gas and air i.e. no epidural, so there were no concerns that this could have been the cause.
Gradually, as the weeks and months progressed, the numbness increased and lower back pain began to worsen. The pain and stiffness in my back was starting to become unbearable and what worried me more than anything was that I was starting to get severe pains in my right leg. Over a period of about seven months, I visited my GP at least once a month to report ever increasing discomfort and at no point was it suggested to me that it could be a slipped disc, resolving it to the demands of a newborn baby coupled with mild post natal depression and lack of sleep. In April 2010, the pain accelerated and the numbness started to radiate down both legs, I was bed bound and it was at this point that my GP became concerned and sent me for an urgent MRI, stating that my spinal cord could be compressed and that it could be a disc causing it.
In May 2010, an MRI was carried out and I was referred to see a Musculoskeletal specialist who took one look at me and diagnosed an L5/S1 disc herniation, she didn't even need to see the MRI! She booked a follow up appointment for six weeks later and referred me for physiotherapy. She seemed quite positive that the disc would resolve itself within this period and that surgery would only be considered as a last resort after trying more conservative methods. During this initial recovery time, I followed the advice of my physio and religiously did my exercises, I was also taking Co-Codamol 30/500mg, which in hindsight did absolutely nothing for my pain but did make my mind all fluffy, enough to take the edge off so that I could look after my little boy. Eventually, in July 2010, I was referred for a surgical consultation as nothing had worked and I was still in severe pain. This is when things really got silly, and well, I lost all control of what I was being subjected to. I was supposed to see a neurosurgeon and instead, I got an appointment with an orthopedics surgeon who within five minutes said that he wanted to operate. I, slightly alarmed, told him that I would take some time to consider my options and contact him once I wanted to go ahead. After speaking to my GP, we decided that I would go ahead with the operation, only after a second MRI was carried out, after all it had been nearly three months since the last. I spoke to the consultants secretary and explained what I needed to happen. She called me back and told me that this was not possible and that if I wanted the surgery it would be done without a second MRI and if I was that bad we wouldn't need it anyway! I refused, feeling absolutely disgusted, the surgeon obviously thought I needed surgery as he was confident that if I gave the go ahead he would've had me booked in within the month but then he was quite happy for me to walk away. I got back to my GP and at this point she re-referred me to another hospital, this time asking for a neurosurgeon on an urgent basis. In the meantime, a good friend of mine recommended her Osteopath and I began twice weekly session at a cost of around £38 per session which we couldn't really afford but at this stage I was happy to pay anything just for some relief. The Osteopath helped a lot in terms of relaxing the muscles and for at least an hour after each session, I didn't feel too bad. As far as the sciatica is concerned, I don't think that this particular treatment has any impact. The painkillers weren't working at all, in fact I do believe they made me worse, codeine can cause constipation and this didn't do my lower back any favours! I tried Bu Trans, low dose morphine which again, made me worse, diazepam helped the muscles relax but my GP refused to give me more than seven 5mg tablets a time due to its addictive properties. Eventually, I decided to come off the co-codamol, this in itself was horrendous, I suffered terrible withdrawal and vowed never to take this evil evil drug again, it really messed my head up!
Eventually, I got an appointment for the 8th September to see a neurosurgeon. Imagine my disappointment when I was told that due to hospital error I had been booked in to see a neurologist and not a neurosurgeon! It took me fourty minutes to get there, reclined into a lying down position in the passenger seat with a crying baby in the back of the car and my poor husband having to deal with both of us because at this point, I couldn't sit up, let alone stand. I wanted to cry my eyes out but instead I called my GP again, this time they faxed through the referral whilst I was on the phone. I still didn't hear anything, a couple of weeks later I started to get angry. I started to chase the secretaries, I became just a sarcastic as some of the responses I was getting and eventually I wrote an email, a long email, stating all the negligence I had suffered and what do you know, a day later I got a telephone call from their management telling me of an appointment time and date. Albeit, the details belonged to another surgeon (not either of the ones recommended to me!) but nonetheless, an appointment.
On the 4th November, I saw the consultant who seemed a little nervous but told me that I needed to be operated on right away and that he was shocked to see such a big herniation in someone of my age. He ordered another MRI and booked me in for tests the next day, after offering me surgery only three working days later on the 8th November! I went in for the tests and later that day went online to see what I could find about my surgeon and was dismayed to find nothing, not even a standard profile on the hospital website. I decided to write an email again, this time stating that I wanted the surgery but with the surgeons that were recommended to me and not the inexperienced one that I had been fobbed off with (I even asked his secretary how many of these procedures he had carried out, to which she did not have an answer!). A little over a week later, I got a call from the surgeons secretary and was told that I could have the procedure done with the surgeon of my choice and as luck would have it, he had had a cancellation at his private clinic and would I be interested in having the procedure done at the Priory?! Needless to say, I jumped at the opportunity! I had my L5/S1 discectomy carried out last Saturday 18th November 2011, I was in hospital for one night and came home the next day. The first couple of days were difficult but nothing that I couldn't manage and since then I have been coming on leaps and bounds. I started taking Gabapentin 300mg x3 daily a few weeks before my op and am obviously still taking it now, coupled with paracetamol, I barely feel any pain and I feel fantastic. I still get the odd twinge or pain down my leg and in the buttock area but compared to what I was feeling before, this is a walk in the park. I can sit, stand, walk, dress myself and shower without crying my way through it. BUT best of all, I have been able to hug my little boy for the first time in eight months! I finally feel like there might be light at the end of this huge, depressive tunnel and I can't wait until the six weeks recovery is over and done with before I can start to really live again.
I wont write anymore (I feel like I've been typing for ages!), although I could write three times this much and still not give you the full account of this horrible experience but if there are any specifics that anyone would like to know, please feel free to ask me ANYTHING, I really don't mind.
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