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Tarlov Cyst on the spine: Any advice?
Spine Health | Last Active: Oct 21 8:17am | Replies (173)Comment receiving replies
I sadly am in your same boat. I have several large sacral Tarlov cysts with the largest one at 3 cm and more up my spine which are not symptomatic yet. The cysts are eroding my tailbone and caused a lot of low back pain. The ones in my sacrum are symptomatic and caused me much pain in my lower back and affect every thing below the waist. I have to meet her out how much I sit stand or walk and I have to have several lay downs during the day. doctors are ignorant on the subject and do not understand Tarlov cyst at all. I was actually diagnosed by my chiropractor who very kindly called me on the weekend and told me it was going to be life-changing. That was six years ago and I am so much worse. I found out I have ehlers-danlos syndrome also. I have talked with Doctor F. in Dallas Texas, the only one who I would trust to operate on these. Do not get the fibrin glue it does not last more than a few months and can make surgery down the road more difficult. I am not a good candidate for surgery so I will live with these the rest of my life probably in misery. Aleve is the only over-the-counter medicine that helps and I have taken it every single day for 6 years. I take Flexeril when I am in a bad flare-up. Ice, heat, Epsom salt baths, Tens, salonpas, biofreeze, are some things that help. Exercise makes mine totally worse and sends me into a flare up. Swimming pool is great therapy but don't overdo it. on Facebook there is a Tarlov cyst support group I would recommend joining that and you can search at the top for any types of medications that people are using. I just keep praying that someday in the future they will have a way to operate better on these things! Wish I had better news for you!
Replies to "I sadly am in your same boat. I have several large sacral Tarlov cysts with the..."
@aquafun23 and all others...
I am so sorry to hear of your pain and that you're not a good candidate for surgery. If you don't mind, may I ask what reason Dr. F gave you? He did my surgery in Dec. 2020 and I'm not almost 4 mos. into my 2+ year recovery. For me, the pain is the same so far but the jolts of nerve pain in the perineural/pudendal areas, in the butt cheeks, legs and feet get worse and almost constant the more I move and try to walk. The tailbone pain is a bit crazy too.
For everyone... I sincerely apologize if anyone has contacted me with any questions. I haven't been on here in awhile but I will check my PMs when I do log in. I've just had a lot going on and as I'm sure most of you can agree, those in pain like this get overwhelmed very easily. I strongly urge all of you reach out to the Tarlov Cyst Foundation and Dr. Tennant from the Arachnoiditis and Intractable Pain Syndrome Foundations. Tarlov Cysts go hand in hand with EDS and other connective tissue diseases, arachnoiditis and intractable Pain Syndrome. I have contacted Dr. Tennant directly and will be sending him my MRI shortly. On both of his websites he has forms to fill out and take into your doctor (who is also welcome to contact him with any questions) and both sites also have invaluable info. for us. There are specific medications (those that cross the blood/brain barrier) that are a necessity for the inflammation and pain. He also offers a medical protocol for your doctor to review along with a self protocol you should start right away. I have come in contact with quite a few people that have either been treated by Dr. Tennant or have benefited from other info. he provides and ALL of them have nothing but good things to say. We must continue to push and demand the correct treatment for our conditions. Don't take no for an answer from your doctor. If that's the case then move on to the next doctor and the next until you find one that is open minded enough to work with you and is willing to learn about our conditions.
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Hello @aquafun23, welcome to Connect. That certainly sounds painful!
Since this is a discussion hasn't been active recently, I'm inviting @bogobarb, @qball2019, @joken, and @summertime4 back to this conversation as they also posted about being diagnosed with a tarlov cyst. Do any of you have any helpful tips for aquafun23 on pain management for Tarlov cyst?
You may also want to check out another discussion where they posted about this issue as well, you can find that discussion here, https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/.
@aquafun23, Is there a tool or diary you use to help measure out your exercise and pain levels? It seems like a lot to keep track of but has helped you figure out what causes flare ups.