Introduction and post-op advice
 

Greetings, all, from Austin, Texas. I had surgery last Friday (6 days ago) in Dallas with Dr. Feigenbaum. I had 4 cysts on S3 and S4; the largest was well over 3cm and had "remodeled" the adjacent bone. Although my pain has only been acute since January, I've had a host of other problems over the years that I now believe were Tarlov cyst related. I had an MRI 5 years ago that showed 1 cyst already over 2cm, but it was dismissed as incidental. I'm sure many of you have had similar experiences!

All seems to be going well with my recovery but I'm wondering about swelling. The surgical site is starting to itch and swell a bit, and I don't know how much swelling is "normal." Also, despite taking stool softeners and metamucil, pushing fluids, and eating high fiber foods, I'm really struggling with post-op constipation. Anyone have any advice for this?
Many thanks!

Hi, hope you are feeling better
 

Hi fmiyakaw,
Hope you are doing better now. Please keep up posted as many of us are on the road to surgery. God bless you!

Hi fmiyakaw, I am glad you doing well after your surgery. It's going to be 3 years in October since I had my. I think itch and swelling is normal, I remember I was concern too. You can always call office, and ask.
Most important is take it easy, do not over do it. Recovery takes long time. Even if you think you up to do something, be careful. And if you in doubt, don't do it. Let us know, how is your recovery going.

Thanks, all. Doing a bit better. Stopped taking my pain meds yesterday (taking tylenol instead) and that has made a huge difference. I don't need the pain meds anymore and they really clogged my system up. I'm also sleeping better. For those of you heading towards surgery: keep taking laxatives/stool softeners when you leave hospital. My entire perineal area is numb, and nurses said this might be true for months. So your bowel and bladder will need all the help they can get! Severe constipation has truly been the worst part of my recovery so far.


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Your post is much appreciated
 

Hi fmiyakaw,
I will be having an appointment with Dr F September 24. My symptoms have worsened and I am so much looking forward to the day of my surgery. Your post-op updates are much appreciated. What were your pre-op symptoms? Did you go into the surgery having nerve damage? Thank again for your generosity.
I wish you a smooth and "fast" recovery. God bless you!

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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Thank you Thank You!!!
 

Dear fmiyakaw,
I am touched by your generosity....sharing your painful TC journey and providing all the details you provide, is very helpful. When I read your post, I felt you were describing my journey almost word by word, including the frustration of dealing with doctors who aggravate our pain with their incompetence.
I am glad you now have a good pain doctor, one that can advocate for you.
I am happy to hear that you are getting better day after day.
Please keep us posted as much as you are willing and able. Your post-operation journey gives us hope and guidance. God bless you!!!

Did your symptoms come and go?
 

Hello everyone... my MRI shows 8 cysts in the sacrum. I am scheduled for surgery with Dr. Feigenbaum in Dallas on December 20. I was wondering if any of you every noticed that your symptoms before surgery sort of came and went? I am currently feeling pretty good which makes me wonder if I am doing the right thing in undergoing this surgery. Other times I hurt so much I can't even do grocery shopping... symptoms come and go and are different each time they come. Thanks for your wisdom! :confused:

I am having surgery on Dec 20 and am starting to get nervous. I have questions. Would you be willing to speak with me? I don't know how this site works... not sure where we go from here...

Hello jpdalton378, Some of these threads are older, I copied your post to a thread of your own here where you can add more information and ask questions - in a short time more site features will be available for you also -
http://www.neurotalk.org/tarlov-cyst...-symptoms.html