Originally Posted by fmiyakaw

Hi, Claudia, thanks for your good wishes. I continue to do a tiny bit better every day, especially since I got the constipation thing worked out. I do however seem to be having an allergic reaction to one of my meds and have an itchy rash. Hoping to get that worked out with my pain doc tomorrow.

You asked about pre-op symptoms. I'm starting to think of these symptoms as chronic vs acute. I started with noticeable acute pain in my tailbone area back in January. Couldn't sit for long and had no real explanation. I didn't have a sudden injury or trauma in January. Just noticed pain one day and assumed I had somehow bruised my tailbone. So I put myself on a regime of anti-inflammatories and ice/heat/rest. By March the pain was getting worse, not better, so I went to my GP. He ordered an X-Ray, which of course showed nothing, and just assumed this was a chronic pain issue and sent me to a pain specialist. But I insisted on a scan because I knew something was wrong. Had a CT scan with contrast and the radiologist found the cyst. Pain doctor dismissed the cyst like most do but I had already done my research and found the Tarlov Cyst Foundation. Instead of listening to the pain doctor, I made him order a closed MRI for Dr. F and called Dr. F's office myself to make an appointment. (I later fired this pain doc. He was a jerk. I now have a pain doc who completely believes in Tarlov cysts and was very supportive of surgery!) Since I live in Texas, I had the benefit of in-state insurance networks and I only had to wait a month for my appointment. I first saw Dr. F in May. He confirmed the cyst, showed me two possible additional cysts (in the end there were 4), and suggested surgical treatment. It was a little under 3 months from initial appointment to surgery.

So during this waiting period, my pain worsened. I also had trouble with nausea and headaches. I had sciatica type pain in both legs, but mostly in my right leg, and all the way down into my calves. I had very low energy. Walking too fast or too much would make it worse. Even walking in the pool caused pain. Sitting was the worst, especially driving. Greatest pain relief came from lying on my side. Some days I felt like my legs weren't attached below the knees. Some days I couldn't feel my thighs very well. It wasn't really numbness; I just felt like my legs weren't there! My best pain relief came from tramadol (and that's proving true again now; I've had to go back to something stronger than Tylenol but I never want to see morphine again.). I tried gabapentin and it made a mess of my life: I was catatonic and couldn't think, much less parent. Acupuncture also made a huge difference. I went weekly, starting in April, and for a couple of months I would come out of a session pain free and would remain pain free for several days.

But there's also the issue of chronic pain. I've had low back pain for 15+years. I do have some degeneration, but I wonder now if these cysts were present when I had my very first MRIs. I know at least one was already over 2cm as of 5 years ago. And 6 yrs ago I developed chronic plantar fasciitis in my left foot. I went through every treatment known to medicine over the course of 4 years and still didn't get better. Along the way I had several physical therapists and massage therapists tell me that my hips were uneven. So what if my hips have been uneven all this time because I had huge cysts in my spine? Ever since I started acupuncture to treat my cyst, my foot has been pain-free. I really think many of my chronic pain issues have all been wrapped up in these Tarlov cysts, but no one figured it out. I've also had trouble with RLS for years. Definitely could be related.

As for your question about nerve damage: I really don't know, and Dr. F has been clear that it will probably be a good year before we know for sure. I still had good mobility compared to many of his patients, and hadn't yet gotten to the point of bladder/bowel disfunction. So I am hopeful.

Sorry this is so long!


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