Monday, 8 September 2014

Three Year Spinal Pain Milestone and Health Care Update

The last two months of my life have been both overwhelming and enlightening- and I mean that in a mostly positive way.

So much has happened and unfolded since I began receiving private health care at the beginning of July. I've learned more these past two months than in three years under the "care" of the NHS. It's been moving so fast that I'm still trying to get my head around it all.

It began with x-rays and MRI scans, which revealed the first of several previously undiscovered abnormalities. I'll call them abnormalities because I don't know how else to phrase them right now. 

I learned my spine has some slight curving, likely to just be a result of the pain and it's affect on my posture. (Although that isn't really a cause for concern right now). 

I also discovered that I have an abnormally shaped or extra piece of bone near the base of my spine, sitting against my sacroiliac joint, which is just above the pelvis. 

My Doctor wanted to get a more in depth look at what was going on, so he sent me off to London for a CT scan at the beginning of August. I was scanned from head to toe for two and a half hours, and had to push myself way beyond my physical limitations to get through an exhausting twelve hours out of bed.

A week later, I got the results of the CT scans. 

I got some more shocking news; the bottom of my spine is fused! And unsurprisingly, my spine is extremely inflamed. (My discs are all still torn, herniated, and degenerated, too).


As you can imagine, I was shocked to learn that there were / are more problems with my body than I was aware of. Shocked. Speechless. I guess I still am.

Two months ago, I thought I had seven disc injuries caused by years of heavy lifting at work, and that was it.

Today, I have (at least) seven disc injuries; a curved, fused and inflamed spine; and a bone at the bottom of my spine that shouldn't even be there. 

I know now that these issues are probably not a result of heavy lifting, but are likely to have developed naturally as my body developed. I've been told that heavy-lifting may have triggered the abnormalities to make themselves known, but I will have had them for a very long time.

Suddenly the past makes a lot of sense to me. As a teenager, I has awful pains in my limbs which the doctors dismissed as growing pains. I had back pain regularly from age thirteen, and if I sat on the sofa for ten minutes (up until I was twenty-six), I would be hunched over like a little old lady. I'd always just put any back complaints down to working so hard.  For some reason I hadn't made the connection until I went private, and everything began to unravel. I'm not the brightest crayon in the box.

I'm trying to get my head around the fact that I'm not injured like I've believed for three years, but I have natural irregularities or conditions I was probably born with. Injuries sound temporary, but natural conditions sound far more permanent, don't they?

I'm left wondering why the NHS never picked up on any of the underlying issues. If they did, they never told me. I had MRI scans of my spine, but I was never sent for x-rays or a CT scan- which would have revealed the true extent of my spinal problems. Not one Doctor was the slightest bit interested in helping me, and I'm sure financial costs paid a part it in. The system for back injuries (in my county, at least) is appalling, and it's just not good enough. I feel let down by them,

How many other people are there out there getting inadequate care for their back and spinal pain / injuries? I wish the answer was zero but I'll bet there are thousands.


At the moment, I'm not sure what the future holds. I don't know if anything will fix the problems. I don't know if anything will get rid of the pain, or at least ease it to a more manageable level. I don't know if I'll ever be pain free again, or if I'll have to deal with pain every day for the rest of my life. I just don't know.

My new Doctor, however is dedicated to helping me find out. There are options that we can try. 

One option has already been activated; a few of weeks ago I had facet injections, right in to my spine. They were done under local anaesthetic and x-ray, so the Doctor could administer the steroids in to the exact areas. I felt like a human pin cushion! I lost count of how many injections I had after eight. Thankfully only one of them hurt like hell, and it confirmed exactly where the pain is coming from- the sacroiliac joint and that extra piece of bone! I've spent three years thinking the discs were the source of my pain, so it's completely bizarre!

It's been almost a month since those injections, and I've yet to see any improvement in my pain. For the first couple of weeks, my pain was actually far worse than usual. I couldn't lie on my back, or sit up against anything because my back hurt so much. It was difficult to get through. The doctor said it can take six weeks for the steroids to take affect (after originally telling me two), so there's still a possibility that the drugs will work, but whether they will I don't know.

In the mean time, he wants me to begin physiotherapy with a specialist physiotherapist to help get my body moving.

My first appointment was late this afternoon. It was an hour long appointment, and it was mostly just a chat today, so that she could gather as much information as possible about my current physical state, and medical history. I also had to do some basic stretches so that she could see how my body is functioning, and as my body is so tense and shaky, I even got a ten minute back massage! Score!

She was shocked by how I've been left this way for three years, and how little physiotherapy I've had with the NHS. She's not sure that physiotherapy is going to sort me out, but she's going to at least try to help me. Her aim is to help me make my body stronger again, and to relax all my tense, spasming muscles. (My limbs shake constantly).

I've got another appointment with her next Monday, and in the mean time I have to try to go for a short walk every day, and do some basic stretches. It's going to be interesting since today's session has left me in agony, but I love going for Autumn walks, so I'm just going to embrace it! I want my life back one day.

My parents have been thinking about getting me a dog for a while, so that I can have someone to keep me company, and I think I've found another reason for the 'pro' list. I think it would give me the motivation to take these walks every day, even when the pain is through the roof. We've never had a dog of our own- though I spent a lot of time helping out with my sister's old German Shepherds- so nothing's set in stone yet, but hopefully I'll have a four-legged fur baby to encourage me to take those steps in the right direction before too long.

Today also marks three years exactly since the pain started in my back. It's hard to believe I've been in pain for three years straight! I don't know how I've made it through these three years, but I know that this blog has had a lot to do with it; I think I would have gone crazy without this little space to throw myself in to and give myself a purpose every day!

I have you all to thank for reading this little blog, and for giving me a reason to keep blogging, so thank you! And thank you to everybody who comments on my posts and has left lovely messages of support on personal posts like this one over the years. You guys are awesome, and your support has helped me get through some truly crap days, so thanks for you your kind words and for continuing to read Polka Spots and Freckle Dots! It means more to me than you'll ever know!

6 comments:

  1. I am SO fucking angry the NHS left you in this state for almost 3 years. It proves without a doubt patient care is ALL about money and not the patient. I'm disgusted. I know this must be costing you or your parents the earth but I'm so glad you're finally getting to the bottom of this! x x

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  2. I can't believe that these problems have been underlying for all this time and nobody has bothered testing you for it! I'm so in awe of how well you're handling this, and how positively. I'm so pleased that you can start to take tentative steps in the right direction.

    Also, a dog would be an amazing companion and motivation for you. It reminds me of Charlotte's story over at Rhodesian of Edinburgh. The only concern would be getting the right breed, my Tilly nearly pulls me out the door half the time she's so excitable and that's the last thing you need haha! xx

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  3. I'm so glad you finally found out what is causing you such pain, I can't believe you've had to suffer for 3 years to get there though.

    I really hope you start to see some improvement soon xx

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  4. I'm so happy you finally had some answers but it's terrible that's you have had to go to these lengths to find out the nhs should have helped you long ago xx

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  5. Oh, I'm so sorry it's taken you so long to get some information, but at the same time I'm not surprised. I've been basically dismissed with "there's nothing more we can do, you'll have to learn to live with the pain" re my stomach pains. I have no idea what causes them or how to stop them, but sometimes I'll be unable to walk, move, drive, eat etc. I guess it's all to do with money and funding.
    I hope that your injections help (?) and a dog sounds like a great idea.

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  6. I'm so sorry to hear that its taken so long for your to get some good information about your condition. I hope having some more knowledge of what is actually happening with your body will help you move forward and get some better treatment! A dog sounds like a wonderful idea - dogs are such amazing loyal companions, plus you read so much about animals helping people with health conditions. I'm glad that this blog helps you out - I only read blogs of folks I know I would be friends with IRL as well as the blog-o-sphere!

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