My back pain has progressed to the point of being intolerable. Like a house is sitting on my low back and my bones are ready to explode. There has been unbelievable hip pain that goes with this, and my ability to walk, stand, sit, lay is rapidly declining. The nerve pain has become so prominent just recently I feel like I'm on fire! These can cause incontinence and UTIs, remember I was taken off Enbrel for recurrent UTIs!
Upon taking another look at my MRI reports from a year and a half ago see perineural and tarlov spinal cysts mentioned, one is even considered large. So I start to research to find our just what they are. Both are really tarlov cysts from my understanding.
These are actually formed at the spinal nerve root, filled with spinal fluid that has leaked out through 3 layers of sheath which encompasses the spinal cord. They are so rare most med schools barely mention them, most neurosurgeons know enough to run at the mention of them.
There seem to be 7 maybe 8 neurosurgeons who either do one of two procedures, operate or aspirate and glue. NOw the thing is, even if the they suck out the spinal fluid, these cysts always come back, usually not in the same place, but it all starts over again. There is also one in Milan, Paris and somewhere in Brazil. Keep in mind I can barely ride 10 minutes to my GP!
The neuropurgeon who operates, has a practice in TX, KS and the Isle of Cyprus, he claims to removed the cysts and be able to repair the spinal cord tears, but my husband and I figure if he is one of 3 in the world who do this, the co-pay alone would be at a cost beyond all of our worldly assets!
Lucky for me, two who aspirate and glue are at Hopkins and St Lukes, and I'm about 70 miles west of both.
So as Doc is writing up the order for a new MRI, I say but the rest of my spine is not that bad, right? And here is when he gets very quiet and even nicer than usual, and says yes Susan, it is that bad, I worry about the place where your spine has 'disconnected'. This is the clicking sound you tell me about, this ALONE can be causing all of this severe pain and loss of function, the spinal stenosis throughout the cervical and lumbar spine continue to worsen, but these spinal root cysts are not helping!
Yes, I know there is always hope, but I just feel so totally screwed right now! This man has been my Dr for decades, and I know him, he reminded me that he called me with these results a year and a half ago at 9:30 at night and told me I needed to get to a neurosurgeon! He prescribed me a different kind of morphine, even stronger and told me to tell my husband to take it down right away!
BTW, you will note that the causes are thought to be severe trauma, difficult pregnancies, epidurals and SJOGREN"S SYNDROME! Yes, it mentions connective tissue diseases, but I could not believe it was listed by name! Of course every single one applies to me, but before you freak out, realize these spinal nerve root cysts are incredibly rare!