NeuroTalk Support Groups - Newbie with spinal synovial cyst

Hi everyone,

Happy to have found this forum! I'm hoping to be able to speak with others who can offer me advice and information from their experiences.

I've been diagnosed with a spinal synovial cyst at L4-L5... but, the path to getting here has been horrible and, to be honest, I still find hard to believe!

I started having severe right hip pain in February, upon waking. At first, the pain was only for the first couple of hours in the morning. After movement (ie showering, dressing, commuting) the pain went from an 8 to a 2 by 10am. At that time, the pain was only in my right hip/butt and, other than the pain/tightness upon waking, the only other time it would hurt would be after extended sitting. I'd feel so well by lunch that it would seem I imagined the morning pain!

Since then, things have worsened... the waking pain is at a 9! I need to get up immediately upon waking and start moving. Initially, I'm like a 90 year old - I could seriously use a walker to get from bed to bathroom (I'm 55 and was playing tennis last year!). All I can do for the first hour is hang on to the bathroom counter and move my hips an inch at a time, as things loosen. After 1.5 hours, the pain will be at a 'tolerable' 7. :(

The pain has also changed since February... the pain is now all day, although it gradually lessens to a 6 through the day. Sometimes it never gets below 7.

Some days my entire right leg aches and my big toe. My hip flexors now hurt, my quad/thigh hurts, sitting is still painful, my back is stiff. I can't wear anything that is even slightly snug at waist because the pressure hurts - I've had to buy underwear and pantyhose in sizes XL and 2X so there's absolutely no pressure. I can drive for about 30 min until the pain starts (easier when someone else drives bcz I can shift positions). Forget about tennis... haven't played in a year. I try to do mild yoga and I pay for it the next day.

Getting any treatment has been a nightmare and a rude awakening to our medical system!! Since February, I have seen 3 GPs (mine retired in Aug, adding to the problems!), 2 sports doctors, a rheumatologist (out of her scope), an anestheologist (suggested an ortho), have had 3 MRIs (2 spine, one hip), 2 ER visits and had 3 specialist referrals rejected - orthopedist (too many patients), intervention radiologist (only treats aneurysms) and physiatrist (not sure why it was rejected)! So, since February, other than physio and massage, I've had no treatment or plan. :(

BUT, gratefully, my sports dr found another interventional radiologist who seems to specialize in spinal cysts!! I have an apptmt next week!

I'm really hopeful this cyst can simply be drained... I've read that it usually isn't that simple though. :(

So, I would really appreciate any thoughts, advice, suggestions, experiences??

What should I expect from my apptmt next week? What should I be asking? What's important to know, what's not? What happened if you had this done??

Thanks in advance!