I’ve already written my story about figuring out my diseases by myself but now I want to share what my journey after discovery looked like.
I was finally officially diagnosed in early 2017, after figuring Tarlov Cysts out on my own. My husband was in a fortunate position to get me access to the leading experts in the country, and after reading a study online and reading about one of the doctors involved, I said to him “I want to talk to HER!” Three days later she called me at home!
I explained my history to her and she agreed to study my records and images, to give me her opinion. At the same time I was consulting with three of the nations top Neurosurgeons on the phone and through email, even having drinks with one in NYC, where we discussed my disease. All three of those doctors told me that they didn’t think my TCs were the problem, as they had been taught, but all three told me that IF they were, to go to “This doctor in Texas who only works on those things”.
They were much kinder to me than if I had been a regular patient walking into their practice because they were on their best behavior because of who they were doing the favor for. Unfortunately it can be true that it’s “who you know”. I wish that weren’t the case but at least I can pass on what I was told.
After reviewing my records, the TC research expert got back to me and said “Yes, you definitely have symptomatic TCs and if you decide to have surgery, you need to go to this doctor in Texas”. So, that was it. I had to contact that doctor!
After all of this, I looked online for support groups and joined every one that I could find. After a few months I settled into the one where I felt the most comfortable and had the best feeling of optimism, in my opinion. It’s called Tarlov Cyst Support for Cysters and Misters. At the time it was fairly small and intimate, and would eventually become my safe haven, that literally saved my sanity and possibly my life, at one very dark point.
At the time of my diagnosis, my symptoms had gotten pretty bad and I had already been on opioids for a couple of years, and a nerve pain medication. I had gone from being quite athletic my whole life to a completely sedentary lifestyle. I had been a Hospital Chaplain and grief counselor and was active with my church, but by then I was pretty much home bound and not even able to attend church at all.
My symptoms included the feeling of sitting on a rock and then my whole pelvic floor would go numb, like when your foot falls asleep but it was my whole pelvic region. I had severe low back pain with Sciatica that would shoot down my right leg into my foot. I could trace the nerve path. My second and third toes on my right foot had been completely numb for years too. My main complaint then was the pain though. Not just sciatic but a deep throbbing, constant ache, that radiated around my hips and butt.
At first I was very reluctant to go with the surgery though and looked for any other possible “fix”, so I dragged my feet the first couple of months with contacting the specialist. Through the group though, I learned of a second surgeon in Sacramento, so I finally did put my packets together to send to the one surgeon in Texas and I decided to consult the other as well. It couldn’t hurt to get two opinions.
At this point it was Summer 2017, and although I was in constant pain, I was still able to participate with my family with special events, like driving to their college to watch my daughter March in the football games and tailgating with my son’s fraternity, etc. I had to take massive pain meds and couldn’t go for very long but I was still with them.
It took about 3 months for both of my calls to the specialists and by that time my condition began to rapidly decline. Now I know that I had been living with symptoms of my disease for decades but by this point it was rapidly becoming a crisis. I wouldn’t find out for another year or two that I had other comorbidities, like cysts throughout my spine, but at that point my greatest issue was my sacral cysts.
I also found out, after speaking to both doctors, that I would need a fusion too, at L4-L5. The doctor in Sacramento told me that he could do both procedures but that he wouldn’t do them at the same time. I would have to wait 3 months between surgeries. The specialist in Texas would only do the TC portion of my surgery but he offered to have a colleague tag team my surgery and do the fusion at the same time. I wanted both done at once. I had already had 11 prior surgeries and knew that it would be healthier for me to have one anesthesia, and one recovery.
That was the main reason that I chose him but there was also the fact that the Sacramento doctor was fairly new to the procedure and a couple of the members in the support group had experienced very bad outcomes. They had more complex cases and he just didn’t have the experience, at that time, to treat them properly. He’s a wonderful option now but at that point I had reservations.
There are other doctors that are taking on these cases too. My only warning is to go with a Neurosurgeon, not an orthopedic surgeon, and check their outcomes. Also, if you are a “simple” sacral surgery, without other complicating factors it’s very different than a patient with other comorbidities, like cysts throughout the spine, which could indicate a connective tissue disorder, or high cerebrospinal fluid, etc. In those patients I would always recommend the surgeon that’s operated on the most cases!
I decided that I needed to just go to the guy that had done thousands of these procedures, and that all of the doctors that I had consulted with had told me to go to.
After deciding to proceed with surgery, in October 2017, I began the insurance process for approval. I was declined 2 times before I finally took on the battle myself. I used my “patient’s rights” to demand to speak with the person/people who made this decision. They fought me on that but finally they connected me with that person. She was a single nurse that knew nothing about neurology. She was not happy to speak with me but it was my “right” to do so. I found the insurance company’s Omnibus that had one paragraph on TCs and I demanded a review by a panel of neurologists. After my 3rd application it was approved!
Unfortunately by the time I jumped through those hoops and was able to schedule surgery, it was 9 months and I was completely bedridden. My right leg was becoming partially paralyzed and would give out under my weight, I had severe bladder retention, felt like I had a UTI constantly, had a “dagger up my rectum” instead of sitting on rock, and complete sexual disfunction.
I was missing incredibly important times in the lives of my children, like my daughter Marching in her first and only Bowl Game, and trips that we normally took together for Spring Break. My life was at a stand still.
My surgery couldn’t come soon enough and was scheduled for June 13th, 2018! This date is a new Birthday for me because it was the beginning of getting my life back. I was terrified but I knew that it was going to at least give me a chance at a better life. By that point, all I knew was that without it I was going to be paralyzed or worse.
My worries about surgery were much worse than the reality itself. My husband and I actually went a couple of days early and did a little sightseeing. I was in pain and it was very slow going, but if we were going to be there, we had to see some of the sites!
I even stood in line at the Texas Book Depository Museum with Kevin Bacon and Kira Sedgwick and their family! He really walks just like he does in Footloose! I’m not a “star stalker” but I will say that it added an extra touch of special to that scary trip!
So, after the “fun” came the reality. By the time the surgeon opened my back and directly tested my nerve function, I was “minimally functional” from S1 down. After surgery he told me that he wasn’t certain how much function that I would regain and that mine would be a very slow recovery. He was correct in some ways but in others, I was better than even he expected. Many of my symptoms were immediately gone! The “dagger up my rectum”, gone! Bladder retention, gone! Sciatica, gone! Leg weakness, gone! Pelvic floor numbness, gone!
Initially the most painful part of my recovery was the fusion, but that healed within two months. At that point I felt that I was doing great! I was still on pain meds and limited in mobility but I was very optimistic about my recovery. I’m so thankful for my support group because of what happened next.
I had been warned about the nerves “waking up” at about 3 months but I was so optimistic that that wasn’t going to be me! Then one day, in an instant, almost every symptom returned and more extreme than before surgery. A heavy darkness descended over me…. I was afraid to share it in the group because I didn’t want to discourage others, so I wrote to the admins that had become my lifeline.
They all encouraged me to share it in the group because members needed to hear the full reality of both the good and the bad. Yes, I was a “worst case” but I was in much worse condition to begin with than most of the members. Those women talked me off the ledge and I will be forever thankful. Within a couple of months they asked me to join them as admins and I was happy to “pay it forward”.
My “flares” would come and go for the next couple of years but mostly settled into a painful “normal”. By this point it wasn’t the sacral symptoms anymore but I found out that I had cysts throughout my spine (11 in my cervical spine alone) that were causing symptoms like feeling like I was having a heart attack (cervical angina) or a stroke.
Those sent me to the ER 4 times in a year. My heart, arteries, etc. we’re fine. My thoracic cysts caused pain throughout my mid back. I also found out that I had mild Adhesive Arachnoiditis (AA, nerve clumping inside the cord) that had been there in my MRIs prior to surgery but that is another disease that doctors don’t recognize until it’s catastrophic.
Even the TC specialists, who treat a disease that other doctors question, don’t recognize AA either. It’s unfortunate because patients that know about their AA before TC surgery are able to start the protocol that reduces inflammation, which can make their surgical recoveries so much easier!
I’ve watched this with members in the support group over the past two years, following their surgeries. I wish I had known before because their recoveries have been night and day different from what I experienced, before finding the protocols.
My immune system was low because my body was always in a state of crisis. I had high CSF (cerebrospinal fluid) that crushed my pituitary gland and caused occasional high cortisol levels (cyclical Cushings). I was just a mess with all sorts of issues.
I was searching and searching for answers, trying just about every single suggestion in the group. I would be sure to start one thing at a time so that I could tell what was helping me and what wasn’t. Yes, we all have the same disease but we’re each so different and complex. What helps one person doesn’t help the other. I had found Dr Tennant’s Protocol but even in that there were so many options and I tried as many as could until I began to find the things that worked for ME.
I now have rescue meds and procedures in my “tool box” that help ME with various issues. I recommend that everyone buy Dr Forest Tennant’s books and visit his website. He created his Protocol for patients with AA but they will help people with most any neurological disorders. What worked for me won’t work for everyone, so what I do won’t necessarily be your answer.
The one supplement that was my game changer, and that I have witnessed it’s effects in dozens, if not hundreds of people by now is Mirica brand PEA (Palmitoylethanolamide ) Everyone in my family is on it and my Pain Management doctor began recommending it to his patients in January 2022, after witnessing it’s effects on both of my parents, my husband and myself. He has seen the same results in many of his patients that faithfully take it.
It not only reduces inflammation in the body, which reduces pain, it also has regeneration properties that can help repair nerve damage with consistent use. It has been used in Europe by doctors for decades but most US doctors have never heard of it. It’s even added to cough syrup and other treatments in Europe because it not only reduces neural inflammation, it also reduces respiratory inflammation, including the cytokine storms that viruses like Covid create.
There are many studies on its benefits and no known harmful side effects. Consult your doctor or pharmacist, of course, but I highly recommend trying it. It’s available as a supplement with no need for a prescription but I would trade all of my prescriptions for this one supplement if I had to choose. As a matter of fact, I’ve been able to come off of or reduce most of my prescriptions since taking it!
It changed my whole life! I began taking it in October 2020, 2 years and 4 months post op. At that time I was on 15 mg Morphine ER, 3 times a day, 15 mg Oxycodone, 4 times a day and 600 mg Gabapentin, 3 times day, and it barely touched my pain. I was still in daily 7-8 pain and it didn’t even make me high. It all went to my pain but the longer a person is on it, the more tolerance they build up. Without it I would have been in utter agony but it certainly wasn’t doing what I needed.
Within 10 days of starting PEA though, I was down to 3-4 pain and within 6 months I was able to come off of all of the heavy duty opioids and reduce my Gabapentin down to 300 mg twice a day. I did “step down” to Suboxone, which helped me to not have withdrawals, after 7-8 years on opioids. Now, after 2 1/2 years on PEA, I still need the 300 mg Gabapentin, 2 times a day (2/3 less) and probably always will, and I still keep a low dose of Suboxone in my system for the Naloxone, which is part of Dr Tennant’s Protocol as well, but only 1/2 to 3/4 a film, twice a day.
Not only has it eliminated most of my pain but my symptoms as well. I used to get the “heart attack” and “stroke” 2-3 times a month, sometimes a week. Now I’ve had it one time each last year, in January, and both times I was sick with a virus and my body was inflamed.
I believe that it’s also helping my immune system though. I used to catch anything in the room! Not anymore. Twice last year Covid swept through the family. 6 out 7 of us got it, including 2 who were hospitalized. I took care of everyone and I was the only one that didn’t get it, either time.
I also have suffered with severe seasonal allergies for 2 decades. From late January through mid April, it felt like I had the flu! Last year it was much less severe and this year it hasn’t effected me AT ALL! The only thing that it could possibly be is the PEA that I take religiously, morning and night. I never miss a dose.
Brand is important too. I’ve tried 5 different brands at this point and within days I feel worse and switch back to Mirica. I’ve witnessed the same results with others in the support groups.
So, how am I doing now? I washed my Jeep and my mother’s car last week for the first time in a decade, and I built 2 complete storage, shelving kits from IKEA last month. I’m planning to spend July in Europe with my husband, including an 11 hour flight to Rome! I never DREAMED of being able to do any of that just a couple of years ago.
I also still get flares though, and I’m also going to need another fusion at L5-S1 soon, so I have to be very careful until after my July trip! Just last month I was in a bad flare, in agony, for about 10 days… In those times the darkness tries to creep in and discourage me, but I remind myself that it’s temporary now. So far I’m 100% successful at surviving crappy days! Pretty good stats!
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