How is a Tarlov Cyst treated surgically?
Because the TC is the actual nerve root that comes directly off of the spinal cord, it can not be removed. The only way that a TC can be permanently treated is with the surgical “decompression” of the fluid and then wrapped to prevent refilling.
The surgeries performed by the TC specialists can vary slightly but are very similar. I would never recommend letting any surgeon, other than one who specializes in TCs, and has been fully trained in these procedures, to go anywhere near them. As a matter of fact, no good surgeon would ever even consider it.
I’ve consulted with some of the greatest neurosurgeons in the country, and they would never dare go near them. If you find a doctor that wants to do so, I would run away from their arrogance as quickly as possible. This surgery is far too risky in the hands of anyone else.
The specialists have often done thousands of these cases and have seen every type of patient, from “simple” sacral TCs to those with Connective Tissue Disorders and other comorbidities.
So, now for the procedure itself.
First an incision is made above the area where the cyst is located. If the cyst is located in the sacral area, the bone will need to be removed (Often the sacral bone is eroded if the cyst or cysts are large enough and have been there for a long time).
The type of cyst that is encountered will determine how the fluid is dealt with. With a valved cyst the fluid will be pushed back into the spinal column and with a non-valved cyst the surgeon will make a small cut and drain the fluid. During surgery, the surgeons have constant nerve monitoring going on and can locate the parts of the cyst wall that have the least amount of nerve fibers.
Once the fluid is drained, the cyst will be packed with fat and then wrapped with a material, such as bovine pericardium, to make sure that the cyst will not refill. Small titanium clamps are often used as well. Then the surgeon will cover the area where the bone was removed, if there is enough bone left to do so. Some surgeons use a titanium plate to secure everything in place. Another option is a piece of material that will dissolve, over about a year‘s time, and help create a strong layer of scar tissue. Lastly he will close up the surgical site.
The patient will lay flat for 24-48 hours, and then gradually be raised to a sitting position. They are usually released in about 3 days and return for a post op checkup at 10 days.
Recovery varies depending on the location of the cysts and the damage that had already been done to the nerves prior to surgery. Most patients have very good outcomes but one person’s perception can be vastly different from another’s.
For example, a patient that was dealing with relatively “minor” symptoms such as pain and numbness, and are getting the surgery to stop the progression, might feel terrified when their nerves start to “wake up” at around 3 months. They may experience symptoms that they didn’t have prior to surgery and that’s because the nerves were touched and have to heal from that trauma.
Their perception is often that they made a huge mistake and they’re going to be worse now. That perception isn’t correct though. It is actually the “normal” and typical situation at that stage of recovery. Nerve recovery is a vastly different beast than recovery from any other part of the body. It’s a longer process to heal but healing does come. Sometimes not 100% to pre TC health but it usually stops the progression and most people have a great deal of their pre TC selves back, and some have 100%! The odds are definitely very good, according to studies and in my observations over years in the support groups.
Another patient may perceive things completely differently. If they went into surgery with their nerves already “minimally functional”, with symptoms that can go as far as paralysis, and loss of bladder control, etc. then they may wake up and immediately feel like it was a success. They may have had severe bladder retention but can now use the toilet. They may immediately have strength in their legs that had previously given out on them. When the pains and symptoms of healing happen, they may be thankful because they know it means that this pain is a pain of recovery, not a pain of deterioration.
They may have gone into the surgery knowing that it might not make them completely better but they also know where they would be if they didn’t get it. Their perception of the surgery is completely different.
Patients need to be prepared for the possibility of a very long recovery, depending on their condition going into surgery. Educate yourself about the typical experiences and then prepare for anything else. Typically, in my observations, patients have done extremely well and within a year they usually leave the support groups, because they are out living their lives now. I always appreciate the ones who pop in every once in a while and encourage the “newbies”! That’s the “normal” that I’ve witnessed.
For those with Adhesive Arachnoiditis (AA) I will share this also. I didn’t know that I had AA until a couple of years after my surgery. I had it in images before surgery and it didn’t get worse after surgery, for me.
After starting Dr Tennant’s Protocol, I helped him conduct a study of Dual Diagnosed patients in 2022. I had the opportunity to question him on his opinion of AA patients getting surgery and he told me that he recommends surgery 100% when they’re symptomatic but that it must be done by a TC specialist. He particularly favors Dr Frank Feigenbaum in Dallas, Tx, because he has done thousands of these surgeries.
Over the last 2 1/2 years I have watched many TC members that were Dual Diagnosed with AA, have very successful surgeries, and much easier recoveries than I had, because they were on Dr Tennant’s Protocol before their surgeries and had gotten their neural inflammation under control before the procedure.
As for my personal experience with the surgery. I had been partially paralyzed in my right leg with every other symptom of sacral cysts. I had gone into surgery just hoping to stop my downward spiral. I knew that without surgery, I would be disabled for the rest of my life. I considered surgery my only hope and even if I didn’t get better, I hoped I wouldn’t get worse.
So when I woke up with ability to use the toilet normally, bare weight on my right leg, and didn’t have a “dagger up my rectum”, I perceived my surgery as 100% successful. When my symptoms flared at 3 months, when the nerves “woke up”, yes I was depressed and scared, but thankfully I had been warned that it might happen.
Having a long recovery was expected and I wasn’t very confident that I would ever get back to my “old self”, so everything better than paralyzed with incontinence, I considered “gravy”. Imagine my gratitude now, almost 5 years later, in the ability to clean my own house, wash my Jeep, put together IKEA furniture, and travel with my husband, including an 11 hour flight! I still can’t be the athlete that I used to be and I do get flares that put me back in bed at times, but considering all of the other TCs and comorbidities, my life is great and my sacral surgery was a tremendous success!
Comments