I have had a recent diagnosis of Tarlov cyst. Wondering if anyone else has this diagnosis and what can be done about them.

Welcome anndav. Someone will be along.

Hello

Yes, I have Tarlov Cysts too. I guess it depends on what you mean if anything can be done for the cysts?

I can tell you my personal experience after consulting with several physicians from neurologists and neurosurgeons to pain management. They all told me having surgery to have them cut out can't be done because the cysts are part of the nerves itself. There are surgeries to have them drained, however there are many risks in doing this and the cysts can always come back and grow larger. It can lead to having to have many more surgeries after the fact.

There is epidural injections that can be done to help ease the pain and inflammation, but this too can cause the cyst to grow even bigger than before. I wish I had some better news for you but I don't.

Best wishes,

Diamond Tiger<3

Hello Diamond tiger,
So sorry to hear you are also dealing with Tarlov cysts.
I had some burning sensations but now am dealing with an intense feeling of weakness in legs and feet along with having a feeling of being off and only feel like lying down but it doesn't help. Could this be a symptom of the Tarlov cyst also.
I also heard about a doctor in Texas that does surgery. Do you know anything about this?
Thank you so much for your response.
Anndav

Hello Anndav,

I am sorry to hear you have this awful disease too. The symptoms you are having can be a direct result of the Tarlov Cysts. I do have some of those same symptoms. My response to you may be a bit long, but I want to be as detailed and as thorough as I can be in regards to my condition and also based on extensive research and several consultations with physicians.

I don't know what tests and images you have had done, but it would be safe to assume the 1 test that has been performed is a CT or MRI scan. This is the only way to diagnose Tarlov Cysts. I don't know how the diagnosis came about? Was it a accidental find-the doctor ordered a scan looking at 1 specific thing and during the scan also came across the Tarlive Cysts? Or, Were you having these symptoms you had listed above and went to a physician as a result to find out what the problem is?

My personal experience was the latter. I was having excruciating back pain along with sharp burning to stabbing pain in my sacral area down the leg into the foit that would also cause weakness or numbness sometimes.
I have had several instances where I am fine walking without any pain or problems. Suddenly out of nowhere I would end up with the kind of pain and numbness that you are describing without warning. Based on all I have read this is common for most who suffer with symptomatic Tarliv Cysts. Its very unpredictable and is not just painful, but frustrating too.

Over the last couple of months I had 2 seperate instances that scared me.
1) I was getting ready for the day and was heading to my bathroom to shower. I didn't even make it halfway to the bathroom and I suddenly had the excruciating pain just in my right foot. I couldn't walk any furrher to the bathroom to shower. Instead, I had to turn back around and limp back to my bed. I knew at that moment I couldn't balance my body weight on both foot to stand to take a shower.
2) I was feeling ok this 1 evening and walked outside to roll the garbage can to the street. As I was walking back towards the house, my leg suddenly became numb like my leg was gonna buckle on my from my knee down. I barely made it back inside my house before I could no longer stand with all my weight on my leg.
Its instances like these that happen without warning. I don't have this kind of pain or numbness constantly. But, in the times it does occur, I have to rest and be lazy for a day or 2 before my body has calmed down enough for me to resume my daily activities again.

I have multiple Tarlov Cysts in my sacral-lumbar spine all the way into my thoracic spine. The ones in my thoracic are not xausing me any issues. The ones in my sacral-lumbar spune are. I have bilateral cysts that measure 1.5cm in my L4-S1 that is compressing the nerves atvthose levels. I have had a couple of instances that it has impacted my left leg also. It would feel like a electric shock.
I'm not sure where exactly the cysts are located in your spine or the measurements. Typically, 1.5cm or larger is classified as a large cyst.

You asked me about Dr. F in Texas. Yes, I know who he is and he is 1 of the physicians I consulted with. He along with the few neurologists here in my state of Georgia have all said the same. There is no guarantee with having any surgery to drain the cysts. There is a great chance the cysts will grow back and be even larger than prior to any surgery to drain it was. That time frame can be the same day of surgery to a few weeks, months, or possibly years. Every body is different. Becayse of this fact, there is a big chance you will need to have multiple surgeries after rhe first one to drain the cysts again. There is also a big risk of having a spinal fluid leak which is a medical emergency and requires surgery too. Because of these factors, all of them will not perform surgery on me. Even Dr. F said he wouldn't be comfortable performing surgery on me for the simple fact I have bilateral cysts that puts me in a higher risk category of having a spinal fluid leak.

I will also say personally, I am not comfortable taking suck risks right now even if I were to find a surgeon who would be willing to perform surgery on me.
Please understabd me, do not allow my personal decision or what my ohysicians have told me to make your mind up not to have surgery or to consult a physician about surgery as a possibility. You must weigh all options that is specific to you. Please do not allow anyone to make this personal decision for you either. You and only you and your physician can make this decision. Please do your research and please remember this, if you still want to have surgery make sure the neurosurgeon you are seeing has wxperience with Tarliv Cysts. There are only a few in the United States that have experience with Tarlov Cysts.

My decision to not risk it, I chose to be put under oain management instead ro help manage it until it no longer can. And possibly then I may reconsider surgery again. What I know personally for myself at this time its not a option. Please do not mistake me suggesting you go down the route I chose to go down either. That too is a personal decision. But, if you choose this option, do not allow anyone to shame you about choosing it. Remember, nobody else is experiencing what you are experiencing. My guess would ve that none have Tarliv Cysts either to understand what it feels like to you. In case for arguments sake that someone in your circle does, they still are not you or in your body to make that judgement.
There is the option of having epidural injections to help manage the pain. But as I had stated earlier, this too can exacerbate your condition. I hope this helps explain my personal experience and knowledge of this disease. If you have any other questions or need to just vent, don't hesitate to ask me. I will help answer any questions you may have or be a ear to vent to. I'm praying for you.

Best wishes,

Diamond Tiger<3

Hello Diamond Tiger,
Thank you so much for your helpful response. I am pretty new at all the Tarlov Cyst information. I was having low back to sachral area pain August. Had X-rays in sept and told it was my sacroiliac joint. Went to physical therapy 2 months and was not getting better so went to orthopedic surgeon at another facility and had MRI 10/22. Prior to this my back pain was slight just when I would get up or sitting for long. On 11/2 I had the MRI follow up and was scheduled for sacroiliac epidural on 11/20. Doctor did not mention the 2cm Tarlov cyst at s2. When I questioned it she said it was an incidental finding. I ended PT on 11/6. Just about this time I started having burning sensations in my butt area. So made appt with original physical medicine doctor who did X-rays. I told her I was having burning in butt down to
My thighs. She said I had piriformis syndrome and that Tarlov cyst is no symptomatic. Went back to orthopedic with new symptoms and she again said
That it is not symptomatic and if o don't
Believe her to go to neurosurgeon. Meanwhile on 11/20 I againhad these weak feelings and could not get comfortable and went neurologist that day. Told him about Tarlov and he just scoffed it off and said I had restless leg. So went to neurosurgeon on 11/23 and she did say symptoms were 70/30 Tarlov l2 to l3 discs and to see neurosurgeon at main campus for 2nd opinion and referred me to pain management appt not till 12/30 and neurosurgeon on 1/15. In the meantime I have not had the burning since Monday but this weakness sensation does not go away-about every other day. I feel like I am going to die . Do not know what to do. So sorry about my rambling and detailed post. I appreciate all your help and am praying for you also.
If you have any names of neurosurgeon who treat this please let me know.

Thank you for the help
Anndav

Hello Anndav,

Sounds like you have been to the right physicians so far. I would recommend doing research online on Tarlov Cysts if you haven't done so yet. Therr is a website that is strictly for Tarlov Cysts disease, which is Tarlov Cyst Foundation. There is a lot of imformation there and I believe there is a list of physicians listed who specialize in Tarliv Cysts disease.
I reside in Georgia and the couple of neurologists and neurosurgeons I have consulted with are knowledgeable about Tarlov Cysts and the neurosurgeon has experience with the disease. Orthopedic is not a physician I would see for Tarlov Cysts because the cysts has to do with the nerves.

I had to have back fusion surgery done over a decade ago by a orthopedic surgeon in the same area as the Tarlov Cysts. He saw the cysts and wrote it in his operative report but didn't touch the cysts for the reasons I have stated.
I do have SI joint issues and have had epidural injections done to help with it. I also have had issues with the burning pain in the butt to where it feels like my butt is on fire. I could hardly ever sit because of the pain being so bad. 1 of my surgeons had said it was because of the piriformis muscle pinching the sciatic nerve.
The piriformis can be set up 1 of 3 ways in your body. Everyone is different.
1) The piriformis muscle can run underneath the sciatic nerve.
2) The piriformis muscle can run right over the sciatic nerve.
3) The purifornis muscle can be solit like scissors and run both underneath and over the sciatic nerve.

In my case the pirifornis muscle was split like scissors abd was pinching the sciatic nerve. I had surgery called, Piriformis Release where my surgeon went in and cut 1 side of the piriformis muscle to release my sciatic nerve. After I had the surgery done, the burning pain in my butt went away right away and I haven't had it since then. There is a good possibility that the piriformis muscle could be pinching your sciatic nerve too. It would also cause pain in your hip too. If you are anything like me, both the sciatic nerve with the piriformia muscle, SI joint, and the Tarlov Cysts could all be contributing as a whole CV to your pain and the weakness you have been experiencing. I do know it all contributed to my pain and numbness too. After I had the surgeries and epidural injections done, the pain got much better. Like anything else, if I over do it I get a bad flare up from it.
Be careful with physical therapybif you are concerned about the Tarlov Cysts causing your pain. You must find a physical rherapist who is knowledgeable about Tarlov Cysts to understand what you should and shouldn't do.

Best wishes,

Diamond Tiger<3

Hello Diamond Tiger,
Thank you so much for your information. I have been trying to read the info online about the Tarlov cysts per your suggestion. I did find another neurosurgeon in Pa that is somewhat closer to me in Oh that does the surgery I have contacted his office and sent my report. Just want to see what he has to suggest to me. I'm still having the burning and will see another neurosurgeon on Friday will ask him about the piriformis. Thank you for sharing your story with me and I wish you all the best.
Thank you
Anndav

Anndav,

I hope you found the website to be helpful and informative. Glad to hear you found a surgeon closer to your area that may be able to help you. It never hurts to ask and consult as many physicians as you can. With my disc fusion surgery, it took me 4 years after consulting over a dozen or more different specialist to find the 1 doctor that listened to me and believed that my pain wasn't all in my head that I had a serious problem. I get how frustrating it can be. I'm praying this physician is able to give you q definitive answer as to what is the root cause of your pain and discomfort.

Please keep me posted!

Best wishes,

Diamond Tiger<3

Hi Diamond Tiger,
Ian still waiting to hear back from the Pa neurosurosurgeon. Yes the website for tarlov cyst is very helpful.
I am very frustrated as I saw a local neurosurgeon at one of the nations top hopitals
Yesterday and basically told me the cyst is not causing my burning issues. They only cause issues when much larger than 2cm. This is unbelievable. He said that to orobaly been there for 25 years and the bone is remodeled from the cyst. This is not causing any symptoms. This is pathetic!! Sorry, I had to vent!
Again thanks so much for your help.
Anndav