Tailbone and sacrum pain

Posted by joelhoward1092 @joelhoward1092, Apr 14 2:51pm

I have also posted questions about ongoing nerve pain after lumbar laminectomy. While the nerve pain is awful, it pales in comparison to the tailbone/sacrum pain I still have 4 weeks post laminectomy of l4-l5 due to spinal stenosis.

My surgeon had felt this would ho away after surgery as he felt it was likely due to inflamed nerves from the stenosis. It was completely gone for 4-5 days post surgery, but about day 6 it, along with other symptoms, started coming back. Although it is not quite as bad as before surgery, it is quite debilitating.

The symptoms range from sharp burning pain and spasms to the left, right and top of my butt crack. I have tried oral steroids, OTC pain relievers, all sorts of stretches and just started PT. None of which seem to be helping at all.

I have seen a pain management doc, who is recommending a caudal injection in the tailbone area. Which made sense at the time and I would have already had it, but my insurance has denied it.

In the meantime my surgeon ordered an MRI of that area. He said the sacrum and coccyx looked ok, but he saw degenerative changes in my SI joint. He is suggesting an SI Joint injection.

I am going to have one of these injections even if I have to pay for them myself (min $2500).

So here are my questions.

1. Has anyone experienced these symptoms before?
2. If so, how was it treated?
3. Has anyone had either of these injections? If so, what were the results?

I really appreciate any input anyone can provide. I am in a lot of pain and confused about my next step.

Thanks in advance!

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SI joint injections work for me

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Thank you for the reply. Can I ask what your symptoms are/were?

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@joelhoward1092 I’m sorry to hear your having that pain I’ve posted a few times about the same issues. I had L4-S1 fusion 1 year ago @3 weeks someone came up behind me while I was setting and twisted my shoulders. The next week I seen the doctor wanna be and she said it might be a set back but it should be ok and you can start lifting upto 30 lbs and twisting and bending. I went home hat night and showered and decided to bend over to dry my lower legs and have been in pain since. He sent me for an epidural that didn’t help. None of my other doctors ordered an MRI so when I went back to see him he wanted to k ow why I had an MRI (duh something is wrong) The next 3 visits he never got me out of the wheelchair to look at my back. I could rub the tailbone nerves and it would radiate to the testicles and anus , go in and see him knowing it just started the pain and he says no that has nothing to do with it. My final visit last week he said everything is healed, there is no nerves pinched. It might be soft tissue! Now my body says he’s a liar the sciatic is on fire, testicle pain and pain all the way to the feet. I can’t hardly walk to the mailbox, I use a cane all the time, if there’s not a scooter in the stores I don’t go in. I tried physical therapy, water therapy they stopped both of them because of pain. I would do pelvic tilts and straight leg raises in the water and my back pops. He only kept me off work 4-1/2 months I’m a pipefitter so I do a lot of lifting. I luckily got my new family doc I met her and had to ask her to sign my temporary disability for the remaining 6 weeks . His farewell speech was you can go play football ( not sure how since I can’t walk) and then he said I’m sorry I don’t recommend any other surgeries or doctors just like there’s something he’s hiding., and I’m sorry I didn’t help you. Depends which butt cheek I lean on which leg goes numb, trying to rake sticks with one hand is killing my back, for a couple months I couldn’t set in church on the wood floor I had to move to the entry way because the vibration of the bass triggered my nerves. Setting on an exercise ball bobbling up and down BARELY moving up and down and it shot pains up my back, used a foam roller on a door to roll up my spine instantly 2-1/2 weeks of leg pain. I was finally getting some relief from a pelvic therapist (which I thought was for women not men ) now waiting on more visits to be approved. I’m not sure why I would go to him for surgery and him not look to see what else it has caused since that’s what Neurosurgeons do. Other’s have commented the Neutosurgeon say hardwares good nothing else I can do. My 29 ears as a puppeteer is over unless there is a real doctor in this world. God Bless and have a great day

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Wow, I am really sorry you are having such a terrible experience. I know this is easier said than done, but it sure seems like you need to get a 2nd opinion. Possibly even go to some place like Mayo that looks at your entire history and really digs into what might be going on. There must be more that can be done for you. There is no doubt that diagnosing spinal problems is tricky at best. It can be very difficult to identify the pain generator, but it doesn’t sound like your surgeon is even trying. Hopefully you live in a metropolitan area with lots of options for healthcare. Find yourself a new doctor! You may never be back to normal, but surely someone can help you get better.

Very sorry you are in so much pain. I know it can seem hopeless, but don’t stop trying.

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My history is a bit different than yours... I had a thoracic to lumbar spinal fusion as a child due to severe scoliosis, which I presume helped, but I've pretty much had chronic back pain for as long as I can remember, which got worse as I got older.

I've been diagnosed with coccydnia (tailbone pain), and I have SI/sacral pain as well. It's more severe aching pain and soreness, though at worst it can get to burning. After going through the rounds with various specialists, MRIs, etc., to rule out something wrong with my spinal fusion, I ended up with the vague diagnoses above.

What I found helped the most was PT, though I've never tried a steroid injection, so I can't really speak to that. My pain responds to Celebrex, so we know there's some kind of inflammatory component going on as opposed to nerve pain, but I can't take it regularly.

I didn't just see a regular PT though. I saw a pelvic PT at Mayo Clinic Jacksonville and she observed that I have a hypermobile tailbone, which may be contributing to the pain. I don't live in Florida, so when I returned home, I followed back up with my pelvic PT and she confirmed this. They can treat coccydynia with internal treatment (though not everyone is comfortable with this) , but my PT mainly gave me strategies and exercises to relax my pelvic floor, which connects to the tailbone, and that helped with the pain. And I have glute strengthening exercises. I also surprisingly got a lot of relief from using an SI joint belt. I have the Serola brand, recommended by my PTs and physiatrist.

I don't know if it's directly translatable, but I do know that pelvic physical therapists (it requires additional training if you're not familiar...I wasn't) regularly treat tailbone pain like what you're describing and they have additional knowledge about the lumbar/sacral region of the body, so they're usually able to look at how that all might be working together to contribute to that kind of pain.

I'm very sorry you're going through this. It's really rough.

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Did your Sacrum MRI show the presence of a Tarlov cyst on or near one if your sacral nerves? My scenario after lumbar surgery is similar though the nerve pain is concentrated in the buttock not the tailbone. After surgery I was diagnosed with a Tarlov cyst on my S2 sacral nerve. Tarlov cysts are often unreported on MRI’s or if they’re reported it’s as incidental findings. While rare, They can cause symptoms similar to yours. Most doctors do not acknowledge they can cause symptoms. I have had to seek medical advice/care outside of my medical system. It’s worth checking on before you endure the cost of a caudal ESI.

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It would really be helpful if whenever a treatment is denied that it is shown whether it was first denied by regular Medicare or Medicare Advantage. If you have Silver Sneakers that will generally mean you have Medicare Advantage. Thank you!

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@westcom

Did your Sacrum MRI show the presence of a Tarlov cyst on or near one if your sacral nerves? My scenario after lumbar surgery is similar though the nerve pain is concentrated in the buttock not the tailbone. After surgery I was diagnosed with a Tarlov cyst on my S2 sacral nerve. Tarlov cysts are often unreported on MRI’s or if they’re reported it’s as incidental findings. While rare, They can cause symptoms similar to yours. Most doctors do not acknowledge they can cause symptoms. I have had to seek medical advice/care outside of my medical system. It’s worth checking on before you endure the cost of a caudal ESI.

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@westcom - Thanks for the input! There was no mention of that on the MRI report and my surgeon did not say anything about that. But I will definitely ask. I had not heard of that before. So did you have it removed and that helped?

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@bunnybear

It would really be helpful if whenever a treatment is denied that it is shown whether it was first denied by regular Medicare or Medicare Advantage. If you have Silver Sneakers that will generally mean you have Medicare Advantage. Thank you!

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@bunnybear - Thanks for the input. I have commercial insurance. In this case it ia Cigna. They have been particularly difficult to deal with.

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@joelhoward1092

@westcom - Thanks for the input! There was no mention of that on the MRI report and my surgeon did not say anything about that. But I will definitely ask. I had not heard of that before. So did you have it removed and that helped?

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Joel: The Tarlov cysts are part of the sacral nerve containing nerve fibers and cannot be removed. If surgically treated, they are drained and wrapped to prevent refilling. They are usually asymptomatic, but in limited cases they can cause debilitating symptoms. There are only 3-4 surgeons in the country who do surgery on these cysts. I'm currently consulting with these doctors to determine my next course of action.

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