Life Moving Forward At Last?

I haven’t updated the blog with a personal update in a long time, so after having some treatment, and having something to update you with now, I thought it would be a good time to do just that.

A quick recap for anyone who isn’t aware, or who may have forgotten because of the length of time that has passed, I live with the genetic condition Ehlers Danlos Syndrome which means that, amongst other things, I’m bendier than the general population. The main problem for me at the moment is that my neck is giving me problems. A lot of problems. There is so much pain to deal with that I struggle to manage on a day-to-day basis. It feels too heavy for my neck, I can’t sit up working at my laptop for more than two hours at a time without it being agony and my social life in nearly non-existent.

I’ve sought out help within the NHS and have been fobbed off by an orthopaedic surgeon and a neurosurgeon which then sent me flying off to the US in April, where I knew there was a neurosurgeon who understood the impact of EDS on the neck. How it makes it as unstable as the other joints in the body. It was there that I was finally validated and he diagnosed me with a real neck problem.

I flew home feeling better for the validation but knowing that I needed to find a neurosurgeon here to take me on and believe in me or I’d have to raise a lot of money to go back to the States for surgery to fuse some bones in my cervical spine.

Well, with a little investigative work I found a surgeon and asked my GP to put the referral in. I kept my fingers crossed. The consensus by many (typically) women in the country is that they are not being recognised as having a problem by any neurosurgeon they see.

I have been so lucky, the neurosurgeon is the loveliest man ever. He listened to me and he understood what I was saying. He has also operated on EDS patients with these head/cervical spine issues! And he was willing to help me.

On Monday I had injections in the area he believes is the problem. The point of these is twofold. They are to relieve the pain and if this happens, then it is diagnostic, it shows he has the correct area C1/2 and he ‘might’ go ahead and fuse them. I feel like I’m in safe hands. At last.

This journey, for my neck, has only been going on for about 4 + years.

Living with a chronic condition is tiring. But, I’m lucky in that I have my writing. It flexes my brain, keeps me ticking over when the rest of me is struggling. I also have great support at home and this is massively important. I couldn’t do what I do without it.

The great news, though, is, that I think the injection is working. I’m not feeling the pain I am used to feeling. I’m hopefully optimistic. I don’t want to start celebrating too soon and it all come crashing down around me, but yes, I am feeling some relief. My neck isn’t my only issue, I still have the rest of my body fighting against me, but it has been the largest and most debilitating issue of my life for the last 4 years. To get relief from it is absolutely indescribable.

Please do keep your fingers crossed for me.

Travelling Across The Atlantic For Medical Help

On Monday my other half and I flew out to Washington DC for the medical appointments I have been wanting to deal with for some time. This is where the neurosurgeon who has a real understanding of how the Ehlers Danlos Syndrome body can affect the neck and make it unstable, is based. This is where I hope to get some answers, support, and help. It’s just unfortunate and sad really that I have to travel halfway across the world to get that. Sad that we can’t access it in the UK. But, needs must, and I travelled.

We have rented a lovely little one bedroomed AirBnB apartment in the Capitol Hill area of Washington. If you’ve never heard of AirBnB, I’d highly recommend you look them up. For a lot less than the cost of a hotel, we have the run of an entire apartment and it’s clean and in a lovely location.

 

Tuesday we took it easy, walked to the local supermarket in the morning and did some shopping and in the afternoon we walked some more, taking in the local neighbourhood, which is so pretty. Though, it might be classed as a legal nightmare in the UK. The pavements are block paved and some of them are very uneven and wave-like. Some are even all uprooted where tree roots have pushed up. This would give the sue-everyone-for-everything people a field day as they walk around with their tape measures for lips in paving slabs back home.

One thing I found and loved was a tiny library in a garden!

Also, a number of squirrels running free along the gardens. Beautiful little animals all over the place.

Yesterday we took our first trip on the Metro as I went for my CT scan and MRI. The Metro is absolutely cavernous. It’s also really easy to use and a lot less hectic than the underground in London.

Today I take my CT and MRI discs to the neurosurgeon and have the all-important appointment. This is the part I am terrified about. I am absolutely terrified that he will tell me that though my symptoms are bad, I don’t fall into his criteria where he can help me, which means I will have to continue to live as I have been doing, which, to be honest, is no quality of life for any person at all. And if this is the case, then I’ve wasted a lot of money to get over here and a lot of hope in the process as well.

So, if you can spare any hope today, I’d really appreciate you sending some my way because you’re probably reading this before I get to my appointment.

You might have seen me on social media the past couple of days, but I will probably be quiet today and tomorrow as I digest what comes out of the appointment, be that good news or bad. Even good news, is bad news in itself.

When I’ve had time to take in the results and digest them myself, I will update you. And also keep the picture diary flowing of my time here.

Thank you in advance for any hope help. It’s much appreciated.