Tarlov cyst: What is better to relieve pain ice or heat?

Posted by juliemmm @juliemmm, Oct 2, 2022

Hi there! Just wanted to ask fellow tarlov cyst members if your back/tail bone area gets worse after a heated session? (eg. Hot bath, sauna?)
Is it better to ice the area instead? Do let me know what works for you to relieve the pain. Thank you!

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Hello, yes I suffer from Tarlov cyst at S2.— 1.9 cm last time I had an mri. I have had a fusion at L4-5 which helped that area but I still have pain in lower back,& hip area. I’m still considering Dr. Feigenbaum or Schrott, who operate on these. Also Dr. Welch in PA. They don’t remove them, they drain and wrap the nerve root. It’s actually part of your nerves, not a cyst in the way you think, that balloons with csf from the spine. Yes, both heat and ice pack help with the pain. I lay down with a heating pad, and use an ice pack too.
Epsom salt baths help as well. I’ve been dealing with pain for many years, almost 70 now. Scared to have the surgery, at my age. But who knows, if it gets much worse I may go for it! Wishing you all the best in relief from your pain!

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@frances007

I had surgery in 2018 to remove the Tarlov cyst and the surgery was a complete success. I had similar symptoms which you have described. My surgeon advised that it was best to remove the cyst because leaving it in place would lead to more problems in future. I was hospitalized for about 3 days and the surgery was a complete success. I would encourage you to find a good back surgeon who is familiar with these cysts and the removal of the same. I hope my experience will be as good as mine if you go ahead and have the cyst removed.

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Can you tell me who did your surgery?

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@bustrbrwn22

@frances007. Can you share more about your Tarlov cyst journey? I have had terrible sciatica and interstitial cystitis since 2014 and just found out I had Tarlov cyst by a serendipitous set of circumstances. I am scared since just this year my toes and feet have started to sporadically go numb and be unable to sense the difference between hot and cold water.

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in reply to @bustrbrwn22 I would suggest that you go online and look up: Rudolph Schrot MD, as he is one of the few great surgeons whose specialty is Tarlov Cysts. You may be able to watch one of his recent webinars on YouTube, but I am not sure. There are very few doctors who specialize in the removal of these cysts, making it more important that you see just the right doctor. I do not know if his recent webinar is on YouTube, but it might be worth checking out. As I mentioned, my surgery was a total success.
Now the interstitial cystitis is something I really need some help with, as I presently have my 10th UTI of the year. I found a really great website, UTI Free, that has some very good information that I plan to take with me the next time I see my urologist. You might want to check it out, as it explains why we get recent UTI"s, the nature of the beast and things of that nature. It was started by a woman who had multiple UTI's and wanted to help others like us. There is also a patient handout one can take to the doctor that has specific questions that can be asked about bladder issues. I have just sent a note to my urologist asking her to perform that procedure where she can look inside my bladder to check for certain abnormalities. I had no idea that oftentimes UTI's are not completely resolved via antibiotics, thus the recurrence. Here is the link: https://liveutifree.com. Best of luck. Go figure that I walked to the pharmacy a few minutes ago to get my antibiotic and they were closed for lunch. LOL

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@mfratt

I just last week went to a neurosurgeon and had this discussion with her about removing them. Trying to get a new mri since have them in my thoracic spine and sacral area. It’s been a long time coming and now I’m at that point. Don’t know yet what will transpire. Wish me luck. I will let you know how things go.

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Hi, I also have these cysts on my lower Cervical, Thoracic and lumbar spine. I am in agonizing pain and don’t find any specialist where I live in Quebec Canada to help me with it. I have been suffering from chronic pain and have been diagnosed with myofacial pain syndrome, torticolis, fibromyalgia, endometriosis…I would appreciate any insight since symptomatic Thoracic perineural cysts are rare.

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@somelie

Hi, I also have these cysts on my lower Cervical, Thoracic and lumbar spine. I am in agonizing pain and don’t find any specialist where I live in Quebec Canada to help me with it. I have been suffering from chronic pain and have been diagnosed with myofacial pain syndrome, torticolis, fibromyalgia, endometriosis…I would appreciate any insight since symptomatic Thoracic perineural cysts are rare.

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@somelie Hello and welcome to Connect. I know it's difficult to try to seek care in the US when you don't live there. I tried a search for surgeons who treat Tarlov Cysts in Quebec, and I was able to find this link. Hopefully they can help.
https://www.jgh.ca/care-services/surgery/neurosurgery/
For myofascial pain, a specialist trained in John F Barnes myofascial release (MFR) may be able to help. There is one listed in Montreal.
https://mfrtherapists.com/providers?state=QC&country=CA
You may also want to see our Myofascial Release discussion.
Neurpathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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My Bones are weak and I need Surgery.How long does Evenity take to strengthen them?

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@jenniferhunter

@somelie Hello and welcome to Connect. I know it's difficult to try to seek care in the US when you don't live there. I tried a search for surgeons who treat Tarlov Cysts in Quebec, and I was able to find this link. Hopefully they can help.
https://www.jgh.ca/care-services/surgery/neurosurgery/
For myofascial pain, a specialist trained in John F Barnes myofascial release (MFR) may be able to help. There is one listed in Montreal.
https://mfrtherapists.com/providers?state=QC&country=CA
You may also want to see our Myofascial Release discussion.
Neurpathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Hi Jennifer, thank you for all the info you have provided me with. I will definitely contact Jewish General hospital to find out if they do treatments for Tarlov cysts. As for myofacial therapy, I have done that in the past but unfortunately the pain comes back shortly after treatments.I have done many different treatments like facet blocks, Botox injections, dry needling acupuncture shock wave therapy even hormonal therapy to send me to menopause to relieve my pelvic pain. I need to find out the source of it. It is close to 15 years that I suffer from chronic pain but they had never reported these cysts on my MRI imagings until last year. I work in the field. I am aCT technologist and I am told that these cysts don’t cause any issues by our own radiologists and neurologists!
I have definitely nerve pain and it’s getting absolutely worse with time !!

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@somelie

Hi Jennifer, thank you for all the info you have provided me with. I will definitely contact Jewish General hospital to find out if they do treatments for Tarlov cysts. As for myofacial therapy, I have done that in the past but unfortunately the pain comes back shortly after treatments.I have done many different treatments like facet blocks, Botox injections, dry needling acupuncture shock wave therapy even hormonal therapy to send me to menopause to relieve my pelvic pain. I need to find out the source of it. It is close to 15 years that I suffer from chronic pain but they had never reported these cysts on my MRI imagings until last year. I work in the field. I am aCT technologist and I am told that these cysts don’t cause any issues by our own radiologists and neurologists!
I have definitely nerve pain and it’s getting absolutely worse with time !!

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Somelie,
Have you ever or are you currently on gabapentin? I asked because your story is the same as mine. I just recently well about three weeks ago started taking gabapentin.

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Hi, yes I have been on gabapentin for a while. My doctor had to increase the dose to get some relief and even with the medication I still have quite a lot of pain.

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@somelie

Hi Jennifer, thank you for all the info you have provided me with. I will definitely contact Jewish General hospital to find out if they do treatments for Tarlov cysts. As for myofacial therapy, I have done that in the past but unfortunately the pain comes back shortly after treatments.I have done many different treatments like facet blocks, Botox injections, dry needling acupuncture shock wave therapy even hormonal therapy to send me to menopause to relieve my pelvic pain. I need to find out the source of it. It is close to 15 years that I suffer from chronic pain but they had never reported these cysts on my MRI imagings until last year. I work in the field. I am aCT technologist and I am told that these cysts don’t cause any issues by our own radiologists and neurologists!
I have definitely nerve pain and it’s getting absolutely worse with time !!

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@somelie Thanks for your reply. With myofascial work, it takes time and patience to work through layers of tight fascia. Once you do that, you need to maintain the functioning with home stretches. There is a lot you can do for MFR work at home. It makes a big difference, and when everything moves better, you also have better circulation of body fluids.
I'm sorry you have nerve pain. That's no fun at all. A lot of times, patients know better what is causing pain. We're also all different and our experience and pain sensation tolerance can be different.

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