Tarlov Cyst on the spine: Any advice?

Thank you ... 🙏🏼

Hi mommacat2, I mentioned Penn Medicine after reading this article at PubMed: "Microsurgical treatment of sacral perineural (Tarlov) cysts: case series and review of the literature" - https://pubmed.ncbi.nlm.nih.gov/26745352/. Interestingly, since my initial post in January, all the docs at Penn Medicine, Lancaster PA now list Tarlovs as a condition that they treat. So, they must have attended a lecture by the authors of the PubMed article, as I doubt that all have performed Tarlovs surgery since January. Anyway, a step in the right direction that they work with docs who have. I am planning to move to York PA this year to be near family, which is why the interest in Lancaster docs. For now, I have an appointment with a Neurosurgery practice in Colorado, closer to where I currently live. The more I read about surgical treatments, the less I am inclined to go that route, altho symptoms are worsening. Hopefully, I will know more in a few weeks. And yes, what a boat we are in! When your "condition" is listed at "National Organization for Rare Diseases dot Org" you know you are about to "educate" yourself, and the medical community, about your situation and its possible treatments. That's why it is valuable for us to be able to read and report here. Thanks, Mayo Clinic! Be well, protect your mental and emotional health along the journey! pnl

I sure understand the ‘pause’ in moving forward with any surgery - I am right there with ya! I am going to send my case info to Dr F in Dallas ... I wouldn’t want a neurosurgeon who is a novice dealing with Tarlov cysts operating on me. Even the spine neurosurgeon group at J-H has only one who will consider it, and his experience isn’t that broad with TC. My tailbone pain is pretty bad, and he feels I have coccydynia as a result of my fall on the steps (which broke my left tibia - 11/2019) - so he wants to start with a Ganglion Impar & Caudal ESI ... I’m scared, but have to do something, and just pray it will go well. Getting this done tomorrow 🙏🏼🙏🏼
I hope your upcoming neuro visit provides some answers for you. Hard to find peace isn’t it? We’re not far from York ... but hard to beat living in Colorado! However I know how much living near family you love can be a huge benefit. Wish I had that!
Thanks for the info in your reply! 😊🙏🏼

I=E2=80=99m so glad I finally responded (technical difficulties caused =
the delay). Know that one more heart will accompany you into your =
procedure tomorrow=E2=9D=A3=EF=B8=8FLet us all know results when you are =
ready to report them. And if you know, or hear, anything about the =
practice in Lancaster, I=E2=80=99m all ears. Peace.

>

@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.

Oh, also... When choosing which doctor you want to see for surgery, consider how many of these surgeries they have performed and ask what technique they use. Dr. Feigenbaum in Dallas has performed way more of these surgeries than any other doctor and has the best outcomes. You can find his outcome data on his website at http://www.frankfeigenbaum.com

has anyone NOT had surgery ? and if not, how do you manage symptoms?

I share your experience with these cysts as I have them also in my sacrum and thoracic spin. It’s my understanding that a neurosurgeon can remove them but I haven’t found one as of yet. I plan to see an orthopedic surgeon for my spinal and sacrum issues who has 30 years experience in what my problems are. Hoping he can direct me to someone that can help me. I’m 74 and have a lot of pain when I lay done. A neurosurgeon in the past wrote me off and said that I most likely had them all my life. Not so. It’s frustrating when they write you off. I will keep looking And hope that I find a surgeon who will correct this. If I I have any good news I will post a comment.

Hello @bluej and welcome to Mayo Clinic Connect. You will notice that I have moved your post into an existing discussion on this topic so you can review previous posts and connect with members like that of @mfratt who has already reached out in response to your post.

How are you currently managing your symptoms?

I suppose I should go back to where it all started. 2010 had an MRI for nerve pain in foot. Cysts found on right and left sacral region. Have seen many doctors for problems to which they cannot conclude or say is connected/related to the cysts. I do, we do, we know our bodies. Speed up to July 21st I see another neurologist after having another MRI , he can't help but wants me to go for EMG which I had done ordered from podiatrist but wrong body parts. Soooo, they cannot even find a neurologist to do this EMG. My story is quite long but I will say I have done a phone consult with Dr. Feingenbaum 2 years ago. I am a candidate for surgery. I cannot get medical clearance to go out of state because of my Insurance plan. Let's talk about the mental health effects this has knowing one has to live with something in the body that doesn't belong and is growing. I am scared.