SEVEN YEARS SINCE MY ACCIDENT - Spinal CSF Leak & Arachnoiditis reflection with my husband Matt Hill

[@lindaelwell5198]

Thanks for sharing Becky & Matt. I think that's the key, communication, love, support & understanding of this awful debilitating condition 💕 xx

[@beckyhillblog]

Yes we all need others to help us get through! Thanks again for your kind words Linda! Xx

[@bradfranklin2191]

Thank you for putting yourself out there and helping so many who desperately need to understand what they or their loved one are going through.

[@beckyhillblog]

Thank you for your kind words of encouragement Brad.

[@paulmartin5424]

​@@beckyhillblog nice one sister in Christ I'm also a Christian from Australia amen keep pressing on my Christian sister praying for you both my faith family amen 🙏🙏✝️✝️

[@TEAiM]

This was great M&B - thanks for sharing so openly about your journey x

[@beckyhillblog]

Appreciate your encouragement Luke!!

[@paulmartin5424]

​@@beckyhillblog we need our creator amen ✝️✝️🙏🙏

[@paulmartin5424]

@@beckyhillblog hay sister Becky amen ✝️✝️🙏🙏

[@lindasplaylist100]

Thanks for sharing your journey.

[@NatesEscape]

I'm scared I have this... I've had similar symptoms after an epidural. Do you ever get the neck pain and spine pain at the same time? Mine always seem to alternate and I never get them at the same time.

[@beckyhillblog]

I am sorry you are suffering. Yes I get all sorts of pain in my spine & neck. It’s there constantly. But flares when I bend or stretch my spine or do too much. It’s sometimes hard to know what causes what. But having had a spinal CSF leak & having chronic arachnoiditis (mildly adhesive) for seven years my whole spine is rather messed up. But it took about a year from my accident for the lumbar spine pain to get more acute. The neck pain was awful from the start. During that first year I also had 3 spinal procedures too. (A diagnostic lumbar puncture & two epidural blood patches). Which may well of added to my issues. Although my MRI’s show the arachnoiditis had already started before those procedures anyway. So I don’t believe they caused it - but could flare things (as well as blood patches helping the leak somewhat).

[@Jake-ue4ru]

Hi, I’ve had lower back and sacral pain along with paresthesias in the same area (crawling sensation) for the past few months that is worsening. I have now recently started having spasms in my pelvic area and upper thighs. I had a lumbar MRI which was read as normal. Does anyone have any advice?

[@beckyhillblog]

I am so sorry to hear about your symptoms & difficulties Jake - it’s very difficult when your MRI comes back as clear too. All I can say is that a normal MRI doesn’t always mean everything is ok. Mine were read as normal for five years before the leak and arachnoiditis were seen but would have always been there since my accident. It might just mean the radiologist isn’t experienced in looking for more unusual features of rarer conditions like arachnoiditis/ milder AA or various other things. However, finding someone that does have such experience is hard. And sometimes MRIs do not correspond with symptoms in cases like arachnoiditis. It’s very difficult though because there are various things that can cause such symptoms - which makes finding answers harder. It often takes a very open minded experienced medical team to delve into rarer manifestations of rare illnesses. Regarding advice - it’s just so hard to say apart from try and do your own research then try and find specialists that understand some of the most likely matches you find and seek their advice. You can often find more info about such specialists from finding online/ Facebook support groups/ charities specialising in those conditions. But it’s never easy I am sad to say. I hope you find more answers soon.

[@Europaer-vereinigt-Euch]

Wow you look great! 🙏🏼 I hope you are doing "well"?

[@beckyhillblog]

Thank you - ‘well’ for me! (Which is never ‘well’ in the normal sense. But ‘well’ compared to most of the past 7 years!!!)