Watching the World from the Inside Out

Tomorrow is “Oween,” as Jackson says. Usually, I would be sharing the excitement with my boys right now. Tonight I would be helping them decorate and carve their pumpkins. I would be cleaning the pumpkin goo off of the seeds so I could bake them. Instead, my husband is doing it all. As I’m writing this, I can hear the stress in his voice as he’s trying to change Jackson’s clothes because he pooped in his pants. (Potty training!) I hate that everything is on him and he is having to be Mom and Dad.

I’m imagining how excited Conner will be running from door to door in his Storm Trooper Costume he is so proud of. I know little Jackson is going to be so cute prancing around in his Mickey Mouse costume saying “Tridder tweet” and telling people ‘tanks” after he gets his candy. Conner’s school had a Fall Festival today and my Mom went since I couldn’t go. Both boys wore their costumes and had a great time. I’m a proud mama. I wish I could have been there to see the reactions of the people who told my Mom “Oh, look how cute he is!” when they saw Jackson. I wish I could have watched the excitement on my boys’ faces as they were to playing the games. I wish I could have seen Conner running around with his school friends and been able to see the faces of the kids he always tells me about.  Jackson melts my heart because he thinks he is a big kid too. Even though they pay no attention to him, he runs and chases after them and has a blast anyway. He has the biggest smile and funniest giggle. It always makes me laugh.

On the 4^th of July, I watched the fireworks from my bed. I am a self-admitted pyromaniac and love to light fireworks. Just like Jackson, I love to be in the center of the action and excitement. (I’ve called him Action Jackson since he was in my belly. He’s always been a crazy little guy.) It was bittersweet. I enjoyed watching them, but deep inside I was disappointed that I could not be outside celebrating like everyone else. This time of year, the weather is mild. When my kids are playing outside with their friends, I usually sit on the front porch and watch them. Now that the TC pain has me in bed 90% of the time, I sometimes watch them play through the bedroom window. Honestly though, I prefer to just close the blinds and shut the drapes. I don’t want to see what is going on outside. I don’t want to see if it’s a pretty day or not. I know if I look out my window, I am going to be sad that I can’t be out there. I know it sounds depressing, but honestly, I find being in a dark room comforting.

The view from my bed.

As each new season and comes and goes, I feel like I am missing out on precious time that is flying by so quickly. Conner and Jackson will only be 7 and 3 once. As an adult, it’s easy to say that I’ve seen 37 Halloweens and there’ll be plenty more. Every year it’s the same thing. For myself, I don’t care so much that I’m missing anything. But for my kids, I do. There won’t be another 3^rd or 7^th Halloween. This year, I will have to experience my kids’ trick-or-treating it through stories and pictures.

It’s hard to predict what we’ll do about candy tomorrow. I always enjoy seeing all of the neighbors and their kids dressed up in their adorable costumes. I’d like to be able to sit on the front porch for a while and hand out candy.  But, who knows which space the wheel will land on tomorrow. The weather seems to affect my TC pain. I’ve found this is typical with other people too.  Yesterday and the day before, I stayed in bed and didn’t have to take a single pain pill! That’s huge great news! I couldn’t believe it! Then, last night, I was awoken around 2 am with that ever-so familiar pain going off in my legs. It kept me up for 4 hours. So, out came the stupid pain pills. I didn’t get any sleep and had to spend the day catching up on my Zzzzzzs.

It’s easy to focus on the things I can’t do and the things I’m missing. So, I’ll try to remember the things I can do. I am still here to help my kids get into their costumes and take pictures. I am still going to see their excited faces when we light the pumpkins. I still get to watch them dump all of their candy in the floor and go through it like a giant treasure chest. I’m blessed my kids aren’t going to miss out on the fun on account of me. My husband can take pictures and there will be more Halloweens.

But now it’s the weekend and I have a special little munckin who’s home and wants to cuddle in bed with me, look through the Toys R Us Christmas Catalog and watch Mickey Mouse Club House.

I’m not going to let this turn into a Halloween Boo-hoo fest! This too shall pass. 

Addiction Verses Dependency and Why You Should Lock Up Your Meds!

Of course one of the first questions I asked the Pain Management Doctor was, “Am I going to get addicted to pain pills?”  The answer is, there is a difference between addiction and physical dependency. If I am on opioids for an extended time period, which I will be, my body will likely become physically dependent on the medication. I will gradually develop a tolerance to the medication which will either require increasing the dosage or switching to another medication. Switching around periodically can help prevent building a tolerance. After I have recovered from surgery and it’s time for me to stop taking the medication, I will have to be gradually weaned off of it under the supervision of the Pain Management Doctor. But, this is very different from addiction to pain pills.

Here’s the difference between a physical dependency and addiction. 

Physical dependency

Opioid medications will cause a physical dependency marked by abstinence syndrome when they are stopped abruptly. If these medications are stopped or rapidly decreased the patient will experience chills, goose bumps, profuse sweating, increased pain, irritability, anxiety, agitation, and diarrhea. The medicines will not cause these symptoms if taken as prescribed and any decision to stop these medications should be done under the supervision of your physician in a slow downward taper.

Addiction

Addiction to opioids is a psychological issue where the patient seeks the feeling the drug provides. A person becomes compulsively driven to take the drug and craves it. They might have physical, mental or social consequences to using the drug, but they don’t care. They become willing to do almost anything to get their fix.

This is where I feel it is important to share an experience I had a year ago. I thought it would be a great idea to buy a cheap Groupon for a house-cleaning service. We can’t normally afford it. The crew of four showed up and split up in my house to “clean.” I bounced around from one person to the other, concerned about cluttered counter tops and surfaces. I was picking up ahead of them so they could clean everything. When I walked around the corner, I noticed the guy was opening my closet doors. He was in the closet where we kept our first aid stuff and over the counter meds and was TAKING THE BASKETS DOWN and looking at them! When he saw me coming around the corner he quickly started dusting the shelf and the top of the door and said, “We like to clean the top of the doors and inside closets because they get dusty too.”  Um…. Ok.? At first I was stupid and didn’t realize why he was snooping around. One of the ladies asked me to come into my son’s room and tell her about him because she loves kids and always wants to know about them. Here I am, innocent and naive, thinking, “Oh, that’s sweet.” Meanwhile, the other guy was in the Master bedroom.

Our Master Bedroom is always a wreck. It’s the last room I get to or clean because visitors never see it and there is always a giant pile of papers on the dresser and lots of crap on the nightstand. I went into the bedroom because I didn’t want the guy moving my paper piles (It looks like a mess, but I know where everything is!). When I came in, he was going through my nightstand drawer, where I keep all of my medicine. He was picking up the bottles and looking at them. At this point, I knew what was going on but played dumb because there were FOUR FREAKING people in my house! I said, “What are you doing?” “Oh, we like to clean the tops of drawers because they get dusty too.” I walked into the bathroom (still keeping him in site) and he had set a bunch of my medicine bottles in there and a trash bag was in the floor underneath it. I said, “No, I don’t want this room cleaned. It’s such a mess and it would be too much for you to do.” “Are you sure? We don’t mind” He kept pressing me to clean the Master bedroom and I didn’t leave his sight after that. I think their plan was for one of them to distract me while the other one went through my drawers to find my pills, then swipe them into a trash bag and take them on the way out. 

I will NEVER do that again! I will never let someone I don’t know or have references from come in and clean my house! Lucky for me he didn’t get away with any of my meds. But, it was a huge lesson for me. YOU NEVER KNOW WHAT PEOPLE WILL DO FOR DRUGS. I reported them to Groupon and left a review of what they did. When I looked, other people were reporting that they had done THE SAME THING in their house! How STUPID could I have been? So, if you are a naive and trusting person like I am, LOCK UP YOUR MEDS! Seriously, buy a mini safe and lock them up.

Anywho, back to addiction verses dependency…

I found this video by two physiatrists extremely useful in describing the pros and cons of opioid medications.

**Opioid Use for Chronic Pain - The Good, The Bad and the Ugly - This video was awesome but it's no longer available so I am posting another one that's ALMOST as good. 

The Motherload of Tarlov Cyst Research Articles - Access it Here

I have created an open access folder where I am collecting all of the research articles that I can find related to Tarlov Cyst Disease. Please feel free to use it and download or share as you wish.

Please note that, even though I titled this page "research articles," case studies are not really considered research. Also, just because someone published an article in a medical or professional journal, does not always mean it is 100% right. It is common to find publications that assert the opposite. We should use discernment in our search for knowledge, especially considering that this is a rare disease. Don't believe everything you read on the internet either. I believe that Reta Honey Hiers of the Tarlov Cyst Foundation is the best option for finding out true facts. She is the most knowledgeable and up to date person that I know of and also has a medical background.

If you have any you would like to share that are not in my collection, please contact me and I'd be happy to add them.

Tarlov Cyst Research Articles

Why it Sucks to Be a Pain Management Doctor or Patient

In Tennessee, there are strict Chronic Pain Management Guidelines.

First, doctors have to have you go through a screening process. They won’t prescribe you any medications for the first month. If you have any kind of mental disorder, anxiety, depression, current or past history of drug abuse, you have to go through another evaluation. (In my case, I have to go see a psychologist to see if me taking opiods is a risk because I have bi-polar disorder and anxiety. Oh Goody! Another doctor’s appointment! I love getting out. It feels so good when I have to walk, sit or stand!)

They have to take a urine sample to check for illegal drugs, current medication levels and pregnancy before they can start treating me. They also do this periodically. Some do everytime. Some do random check-ins.

The doctor is supposed to come up with a treatment plan and make reasonable attempts that includes things besides solely prescribing pain medication. I’m guessing that’s why he referred me to a PT for aquatic therapy and a prescription lidocaine cream. (Like I said, I just love getting out. It helps my nerve inflammation feel so much better, especially in the colder weather!) I also asked him about having an injection in my piriformis because I have a lot of pain in that area. Worth a try.

“The goal of chronic opioid therapy is to increase function and reduce pain, not eliminate pain.”

Then there are prescription restrictions, including

·       not prescribing more than four doses of a short-acting opiod per day unless documentation can clearly show a medical reason.

·       not prescribing methadone. (Thank you. I don’t want or need that anyway.)

·      no prescriptions for oral or sublingual buprenorphine, avoid combining certain medications with opioid therapy.

·       If patient is taking “benzo” – (such as Xanax, Valium, Klonopin, Restoril, Ativan,) the opiod dose should not exceed 120mg morphine equivalents daily dose, unless you consult that doctor and they say it’s ok to come off of that Benzo.

More regulations for pain management doctors and patients in TN:

·       Doctors are supposed to prescribe the lowest dose of opioid first, then go up.

·       Patients have to sign a treatment contract that covers why they may stop prescribing me opioids, refill policies, must use one pharmacy, if you lose your medication or it gets stolen - too bad, so sad.

·       They must continually monitor patients for signs of abuse or misuse and must do random drug screenings at least twice a year. I must take all of my medications in with me. They can ask for random pill counts at any time. (Some places do this every time.)

·       All opioid therapy has to be handled by one single doctor or practice and all prescriptions have to be filled at a single pharmacy. So, can’t ever get any pain pills from another doctor.

·       Opioids should be used at the lowest effective dose.

·       They cannot use more than one short-acting opiate at a time unless clearly documented why it is medically necessary.

·       They must continually look at patient behavior, drug history results in the CSMD, Urinary Drug Tests, patient risk of misuse or abuse.

·       If a patient goes to the ER, the doctor must inform the Pain Med Doctor about any changes, emergencies or conditions. IE – The ER can’t prescribe me pain meds or inject me with pain meds without letting the Pain Clinic Doctor know.

So, there you have it folks! I’d like to take a moment to thank all of the recreational drug abusers and pill mill doctors for making it as difficult and longs as possible for doctors and patients in chronic pain to receive the treatment they need. Thank you legislators for leaving out the part where research shows that people who suffer from chronic pain have shorter life spans. We wouldn’t want to freak anyone out! The longer you suffer, the shorter your life will be. Thank goodness I live everyday as if it was my last and I’m ready to meet Jesus! 

Here's a copy of the contract I have to sign to have treatment with narcotics.

Controlled Substances - They're Watching

They're watching you...

At my first appointment with the pain management doctor, I was told that I would be put in a state Prescription Drug Management Program database and monitored. While this sounds scary, it’s not just to monitor patients for abuse of narcotics. It’s also used to track doctors who prescribe them and adds a lot of red tape for them as well. After doing some research, I found out that it doesn’t just track patients and doctors who prescribe and use opioids, but also any Schedule II, III, IV & V controlled substance.  Doctors have to register in the database and submit their DEA certification number. So, for me, little did I know, I’m already being monitored in it because I am prescribed Xanax for anxiety and depression and temazapam (restoril) for sleep. (And, for any of your freaks who are thinking of coming to my house to steal my medicine...Well, first you have to trick our alarm system, then make it past our vicious chihuahua attack dog, survive the booby-trapped house cluttered with toys that makes Home Alone look like a cake walk, then you will have to make it past my husband and his AR-15, or weapon of choice. And, break into a locked in a safe. Oh, and don't forget to not wake the neighbors! So, don't even think about it! And no, I am not accepting applications for housekeepers.) 

Currently, 49 states have their own prescription drug monitoring program database. To find information on your state’s program, find your state on National Association of State Controlled Substance Authoritieswebsite. Some states have stricter guidelines that other.

Apparently, in 2011, TN had the second highest per capita prescription opioid rates in the U.S.

This of course led to tons of unintentional overdose deaths, (actually more than people killed in car accidents, homicides or suicides), more babies born addicted to drugs, more people in substance abuse programs, etc. I’ll get to the dangers of opioids in another post. Hence, the need for a tracking system. In Tennessee, where I live, the Department of health monitors the Controlled Substance Monitoring database (CSMD).

Here is the purpose of the Tennessee CSMD, which is similar to many other states.

“The Tennessee Controlled Substance Monitoring Database (CSMD) is a prescription monitoring program designed to provide healthcare practitioners with a comprehensive view of a patient’s controlled substance prescription history. The purpose of the CSMD is to assist in research, statistical analysis, criminal investigations, enforcement of state or federal laws involving controlled substances, and the education of health care practitioners concerning patients who, by virtue of their conduct in acquiring controlled substances, may require counseling or intervention for substance abuse, by collecting and maintaining data regarding all controlled substances dispensed in this state.”

The prescribers (Doctors) are required to check the database before prescribing anyone an opioid or benzodiazepine for more than seven days, except under special circumstances. Then, the doctors have to report all of those prescriptions pills they have prescribed every seven days.

Prescribers and pharmacists can then look patients up in the system and see their controlled substance prescription history. Any healthcare person who suspects a patient is doctor shopping must report it within 5 days to local law enforcement agencies, but they don’t have to if they are treating them for a mental illness.

Here is a description of the Tennessee CSMD.

The CSMD contains prescription information from all dispensers of controlled substances in Tennessee and also those dispensers who ship to a patient residing in Tennessee. This includes mail-order pharmacies and some Veteran’s Affairs pharmacies as well. The CSMD collects and maintains dispensing data regarding all controlled substances in Schedules II, III and IV, and Schedule V controlled substances identified by the controlled substance database advisory committee as demonstrating a potential for abuse. Data is to be submitted at least once every seven (7) days for all the controlled substances dispensed during the preceding seven-day period. The following information is required to be submitted for each dispensing in ASAP 2009 (4.1) format:

• Prescriber DEA number;

• Dispensing date;

• Patient identifier,

• Controlled substance NDC number;

• Quantity dispensed;

• Strength of controlled substance;

• Estimated day supply;

• Dispenser DEA number;

• Date the prescription was written;

• Whether the prescription was new or a refill;

• Source of payment”

Any doctor treating patients with ongoing opioid therapy prescribing 120 Morphine Equivalent Daily Doses (MEDD) must consult a pain medicine specialist at least once a year.

And those are just the rules for any kind of doctor who prescribes those meds! Pain Management Doctors have a whole entire set of rules. 

In my next post, I will address the rules and red tape that Chronic Pain Management doctors have to go through in order to treat us. Seriously, it makes sense why a lot of doctors don't want to. 

An Introduction to Pain Management for TC Patients - My Experience

Oh the joys of receiving opiate drug treatment! I’m sure at some point, it used to be a simple straightforward process to have your pain treated. But thanks to the few, the rest of the world has to be treated like suspects. From a patient’s perspective, it’s natural to feel like you are the one being penalized and treated like a drug-seeker. But, actually, it’s not just the patients. Because of the nut-job doctors out there who handed out pain pills like Halloween candy to anyone who walked in the door, now medical professionals are kept under a tight leash too. In most states, this makes seeking pain management a pain in the butt … and the neck…the back, legs, feet and many other areas.

Nearly every symptomatic TC patient I have spoken to has a pain management doctor. It’s pretty much a general assumption that you do or will have one because of the length of time you will be expected to be on narcotic pain medications. One of the first things Dr. F’s office asks you for is your PCP and Pain Management Doctor contact info so they can coordinate your care. So, for you cysters out there, if you don’t have one and haven’t seen Dr. F. yet, make plans to get one.

In my search for a pain management doctor (PMD), I learned that not all PMDs are created equal. The TC Foundation advised me that the preferred doctor to see for medication management is a Physiatrist. Unfortunately, these are hard to find in my area. A Physiatrist is focused on pain management and rehabilitating patients and take a holistic approach. This link explains the difference between pain managements differences of physiatrist and an anesthesiologist.  https://treatingpain.com/pain-management-specialty

This video explains what a physiatrist does:

Most PMDs are anesthesiologists and their first line of treatment is using epidural steroid injections (ESIs) to treat pain. For some, if that doesn’t work for you, they will not want to be bothered by prescribing you opiate medications. Ask this question up front before you sign any medication management contracts. Of course, like all, there are good ones and bad ones out there. Some are out to make a good buck. They make the most money by performing those injections, not by seeing you for an office visit to write a script. AND, they do those ALL DAY EVERYDAY. At some clinics, if the ESIs don’t work it’s “Bye bye! Why would I want to waste my time prescribing you pills, causing me more hassles to have to deal with, when I’ve got 50 patients lined up for injections and I can make $2000 a pop with them?”

From my information experience, the majority of TC patients do not benefit from Epidural Steroid Injections, although some have had relief from them. For example, when I had my Caudal ESI, the doctor told me he could not guarantee that the medication would be able to reach between the cysts and the compressed nerves. Guess he was right because the injection did jack squat.  Caudal Epidural Injections for the Treatment of Tarlov Cysts:Suggestions for the Better Results addresses the need for a different treatment approach for ESIs in TC patients.

As you can see here, I was very excited to have my Caudal Epidural Steroid Injection. However, the disturbing picture of my face after I learned the injection did not work has intentionally been omitted for viewer safety.
(I'm kidding. I didn't really take a picture of my sad face.)

If you get a doctor who doesn’t know what they are doing, and they hit the nerve cyst with the needle, big time bad news. In my case, the anesthesiologist was aware of the TCs and the injection site was far from the cysts. I asked Dr. Feigenbaum if it was safe for me to have this procedure and he supported it.  For more information on the dangers of ESIs and TCs read the following: Anatomical causes of failed spinal anesthesia may becommoner than thought;  The level of termination of the dural sac by MRI and its clinical relevance in caudal epidural block in adults and Minimally Invasive Interventional Therapy for Tarlov Cysts Causing Symptoms of Interstitial Cystitis.

So, during the referral process, it’s important to make sure you are going to see a PMD that actually will prescribe you medication should you need them and not just try to stick a bunch of needles in your back. Yet, conventional treatments should definitely take precedence over narcotic pain pills if they work. Also, to avoid having to deal with the red tape, some of them will only prescribe them to you short-term. As a TC patient, it is highly likely that you WILL need medication management. Some require that you are treated with injections before they will prescribe you medication. Ask this question before you sign any contracts. My personal approach to pain pre-surgery . . . tough it out as long as I can and take a pain pill as a last resort. I do everything possible that I can to relieve my pain before taking one of those things. I AM scared to death of dependency. But, the unfortunate reality is, I need them sometimes. 

In my next post, I will explain why opiate medications are so strictly controlled.

What Will Life Be Like While I’m Recovering from Surgery?

The first 24 hours after surgery, I will have to lay catheterized flat on my back and not get out of bed. After that, they will gradually raise the head of my bed 15% per hour. I will stay in the hospital 3-4 days then have to stay in Dallas for a week for a follow up and to make sure I’m ok and approved for travel. During that week, it’s going to be very hard on Michael (even though he won’t say so because he truly believes he is invincible) because he will have to be with me 24/7 to assist me. I’m so thankful that I have friends in Dallas who have said they will come help and give Michael breaks. We plan to rent a hotel that has a full kitchen so we don’t have to order or pick up food for every meal. Please pray that God will give him strength while we are in Dallas and he has to take care of me.

I will have to have handicap assistance in a wheel chair when flying down and back home. My ego doesn’t want to on the way down, but that’s what everyone who has been in my shoes is telling me I need to do. After my first experience making the trip, I can see why. We plan to return first class to make travel more comfortable. Also, going to try to fly into DFW instead of Love Field because they have a direct flight from Knoxville. DFW is a little further away, but it will be worth it.

There are strict limitations post-op and it will be 5 months minimum before I can lift or carry Jackson. Can’t lift a gallon of milk the first month. Will be in bed most of the time. Can’t drive. Can’t bend or twist. “Normal” life will not be returning anytime in the near future. I will have to stay off of my feet and try to walk several intervals during the day. This is going to put a strain on Michael and my parents for several months because I will have to have someone with me all the time. It already has been difficult for the past several months because Jackson has had to live with my parents except weekends. This has been heartbreaking for us, but Jackson is relatively content because he loves his Gram and Pawpaw. They are like second parents to him and of course spoil him rotten. He’s happy but I still worry if this is scarring my children.  Michael has to carry the burden of being Mom and Dad, cooking, cleaning, doing laundry, taking care of me, and EVERYTHING. He has been my rock through this. He IS superman, only he only wears his cape when he is home. I am extremely blessed and thank God for him every day. He is amazing, giving, caring, nurturing, understanding and despite the stress, he has never complained once. The wonderful man cooks meals and brings them to me in bed. I haven’t been able to eat dinner with the family in months. Sitting is painful. Please pray for my sweet husband, my wonderful parents and dear Conner and Jackson.

Mom will have to stay with us at home for at least 5 weeks to take care of me and the kids while Michael is at work. As you know, they are in their 70s and it’s not easy for them either. I’m more worried about them than myself. We are so blessed that they are in good health and are close by to help us.

Most patients have to use a walker for several weeks to get around. (Some don’t though!) I will have to have handicap parking when I am finally able to go out. My other TC friends have told me I’ll need a scooter at Wal-mart. HA! I think I will need to make a T-shirt for that. Maybe, “Yes, I really do need the scooter!” on the back and “Just cause you can’t see it, don’t mean it isn’t there!” on the front?

Post-op, Dr. F will coordinate with my PCP and my pain clinic. I will have remote follow-ups with MRI’s. If there are any complications that develop after I get home, I will have to fly back to Dallas. But, that is very rare.

Question of the Day: Am I Going to Get Worse Quickly?

Dr. F says I have had these cysts my whole life. Most people with TCs never have symptoms. No one is exactly sure of the cause of TCs. The fancy word is “etiology.” Or, why exactly some go from asymptomatic to symptomatic. They have seen cases where there is a connection between TCs and trauma (such as childbirth, falls, injuries, epidural injections, back surgery). They believe that sometimes these cysts are related to connective tissues disorders and other diseases. They have seen cases where they run in families. For those of you familiar with a Dermatome Chart, if you look at the areas related to S1/S2, those are EXACTLY where my symptoms are. (How any neurosurgeon can say that TC’s in your S2 do not cause symptoms is beyond me, other than the fact that they were educated to believe they are asymptomatic and they can’t do anything about it anyway.) 

My pain, muscle weakness, spasms, shaking and sciatic symptoms have been worse on my right side due to the location of one of the large cysts, but the other large middle cyst affects my left, though less severely. The pain starts in my lumbar back, sharp stabbing pain in my piriformis muscle (middle of the butt) and radiates down the back of my legs. The nerve compression is causing my piriformis muscle to stay contracted when it’s not supposed to. It’s a pain in the butt. (hahaha)

All of this mayhem has snowballed very quickly. One of my most concerning questions I had for Dr. Feigenbaum was “This has all come on very suddenly? Am I going to get worse quickly?” (I.e. be in a wheelchair and diapers in two months?)

No way to predict that. But, in many patients, the symptoms do hit all at once.

Dr. Feigenbaum confirmed that the longer you go without treatment, the worse the nerve damage becomes and eventually gets to the point where it is irreversible. There is no consistency among patients as to how fast their cysts grow.  He’s seen pictures of ultrasounds where they have grown over a period of decades. Some in months. I’ve spoken to patients who have had untreatable tiny cysts, fell on their butts, and then their cysts blew up like light bulbs within months on their MRIs. Due to lack of awareness and education in the medical community, because this is an extremely rare disease, even the best of neurosurgeons and orthopedic surgeons don’t know about this, much less are willing to even consider treating it due to the risks.  As of now, they do not monitor the cysts because they are “asymptomatic” and “incidental.” And, being so rare anyway, it’s more likely they their patients with TCs wouldn’t have symptomatic ones.

If my symptoms worsen, Dr. F said to call them. Please pray that I don’t get worse. I’ve spoken to several TC “cysters” who experienced progressive symptoms over a short period of months that ended in them being unable to walk. One friend got to the point where her husband had to literally carry her to the bathroom. Of course, this is my worse fear. I can still walk right now, where many of my TC cyster friends have reached the point where they cannot.

The nature of the disease is its unpredictability. Talk to any TC patient and they will tell you every day is different from the other and you never know what to expect or what new symptom will pop up. It’s like playing a game of “Wheel of MIS-fortune!” Let’s spin the big wheel and see what it will land on today! Oh goody! I got tinkling in my pants when I blow my nose! MY FAVORITE!

Sometimes the debilitating pain gradually creeps up over a few hours. Sometimes it's instant, sometimes it comes on later as a backlash if I’ve been on my feet. One day I tried to put up clean laundry and was only on my feet for 20 minutes and it killed me. Another time, I had been in bed for so long and was beginning to get disgusted at the carpet in the master bedroom and upstairs hallway. I grabbed my handy-dandy dyson ball lightweight vacuum cleaner and did a quick run through. HUGE MISTAKE! Seriously? I can’t even vacuum the hallway!?!? It wasn’t even the entire bedroom! It was nice not to have to stare at the nasty floors anymore, but immediate backlash was definitely NOT worth it. I’ll take my dirty floors next time, thank you! Other days, I can magically manage to drive myself 15 minutes to my doctor’s appointments, but using my right leg to drive hurts and by the time I get home, my pain is pretty bad and I have to go straight to bed. Did I mention that one time I went to poop and my pain went from a 5 to a 9 instantly and I was writhing in bed for hours that night? That pain lasted a day and a half. Seriously? Am I not allowed to poop now? I’ve started taking Natural Calm, which has magnesium and is supposed to make those type of situations “come out” better, if you know what I mean. 

Dr. Feigenbaum Explains Risks and Recovery from Surgery

Dr. Feigenbaum continued by explaining the risks of the surgery. They include CSF leakage, permanently damaging surrounding nerves resulting in permanent loss of bladder and bowel functions, permanent numbness, and then the rest of the usual risks associated with any surgery. You know, bleeding, complications from anesthesia, death, yadda yadda. There is no risk for paralysis.  Since I haven’t had severe symptoms, such as complete loss of bladder and bowel control, BEFORE surgery, the odds are in my favor that I won’t afterwards, but there are no guarantees.  His overall percentage of complications of all of the surgeries he has performed is 5%. I’m not sure exactly how many surgeries he has performed but It’s somewhere in the high 1300s – 1400s. That surpasses any other neurosurgeon’s record like a rocket ship passing a sailboat, if you get my drift. For me, the benefits far outweigh the risk. If I do not get surgical treatment, my pain and other conditions will not improve and my overall quality of life will deteriorate over time resulting in irreversible damage. I am 37 years old with two small happy minions and we have many fun-filled adventures left ahead in life.

I asked about recovery time. The surgery is NOT an instant fix.  Since everyone is different, there is no way to predict how long it will take to recover. They do not have the technology to determine pre-surgery if the nerves have already been permanently damaged and are irreparable. Nerves can take anywhere from 6 months to 2 years to heal. It could be up to two years before we see the final results. He said that, because I have not had prolonged nerved damage and am relatively young, those go in my favor towards a possible shorter recovery period. Nearly everyone goes through a 6-month period of worsening pain and weakness, affecting your ability to walk. It can come and go as the nerves go through the healing process and some sort of “waking up.”

He asked if I had any questions, at which point I whipped out my giant typed up list. He had answered most of them already but patiently went through each one of them with me. I in no way felt rushed. He took a few minutes to get to know my husband and me and I even got to speak some Spanish with him. (I’m sure at that point he realized he had a total spaz on his hands.)

I told Dr. Feigenbaum that I was a member of a TC Disease Facebook group with over 1400 members and asked him if he had any idea how famous he is. He laughed, shrugged his shoulders and said, “I don’t know. My wife keeps me in pretty good check at home.” The common stereotype of neurosurgeons is that they are arrogant. I mean, they are all freaking geniuses right? For all that Dr. F has accomplished, he is by no means arrogant. He was very approachable, humble, and compassionate. If you met him on the street, he’d strike up a conversation with you. (I’m pretty sure at some point his fame is going to catch up with him and he will need a body guard to protect him from the paparazzi.) You can tell that he truly cares about his patients and has a genuine passion for helping TC patients. I’m sure if I could read auras, his color would be whatever the nicest and most genuine one is. He flies to Cyprus several times a year to treat those who can’t travel to the U.S. or for those who cannot afford surgery in the U.S. (It is much cheaper there). He travels back and forth from Kansas City and Dallas performing surgeries for patients. So, for all of you skeptics out there with conspiracy theories that he is just out to make a good buck…No. He is the real deal. No doubt about it.

Since I had him all to myself, I decided to use the opportunity to ask some questions about his research progress. I asked him when he was going to publish his statistics from his first 800 patients. He said currently, they are working with a new data program but hope to have it out soon. You know me. Little miss details. “When is soon? Like the next few months? This year? Two years from now?”  He looked at Katie and laughed, “Well I certainly hope within the year. But you never know once you submit it if the journal will accept it or want you to edit anything or make revisions.” I asked him if he knew which journal he would publish it in because I couldn’t wait to get my hands on it and give it to every single doctor I know! They have thought about a neurosurgical or orthopedic journal, but really want it to be released in a journal that will reach a larger audience in the medical field.
“Something BIG.”  I’m sure he could tell I was very excited about this because I was literally sitting on the edge of my tush cush. I told him how important spreading awareness was to me and that I had joined the foundation, made a donation and am now going to be a huge advocate for this disease.

He was surprised to find that I lived in the same town as Reta, the President of the TC Foundation. He said he had just spoken to her a few days prior. “I did too! I’m supposed to meet her sometime for lunch early November!” (I don’t care if I have to have a piggy back ride and will hurt for a week. I can’t wait to meet the woman.) He looked at Katie and laughed. What are the odds, right? Speaking of odds, I told him I had connected with several of his former patients and have heard nothing but good things. I told him about my random connection with Anne and he was amazed. He wanted to know their names.

So, what happens next? It will take 2-3 weeks to get the paperwork together to file to insurance for surgery. From there, it could take up to a month or longer for the insurance panel to review it and decide whether to cover it or not. If they deny it, they have to go through the appeal process, which takes even longer. After insurance approves the surgery, they will schedule a date for me. As of now, there are 23 patients ahead of me. So, it will probably be at least January before I can have surgery. That is three months away.

They are used to seeing patients who have lost their normal lives, many of whom are women in their 30s-40s and have young children just like myself.  I had a conversation with his nurse Katie about how anxious I was to have surgery because I can’t take care of my 3 year old and I would rather be hurting knowing I am getting better than getting worse. I can’t describe the look on her face. It was filled with compassion and sincerity.

At the end of my consultation, he his nurse Katie even gave me a hug. I told him I couldn’t thank him enough and he laughed and said, “Well, you might want to wait until after surgery to thank me. You might not feel that way then!” I left satisfied, optimistic and like I was in good hands.

Dr. Frank Feigenbaum, Little ole' me, Katie

The Much Anticipated Consultation

I finally got to see Dr. Feigenbaum, the world’s leading Neurosurgeon who treats Symptomatic Tarlov Cyst Disease! I was so excited and running on endorphins that my pain level was low but my blood pressure was through the freaking roof! After all, I had researched the heck out of this guy and probably watched his videos a million times. I consider myself very fortunate to have been able to see him. Many don’t have that luxury.

To say my consultation went well is an understatement. I got an extremely good vibe from doctor Feigenbaum and his staff. I was so pleased to finally see the faces of several of his office staff I had spoken to and emailed. They were all so sweet.

At first, Peg came in and asked me to go through a list of my symptoms. I gave her my MRIs, the reports and some papers I had typed up for Dr. F with my timeline of symptoms. Shortly after, Dr. Feigenbaum entered and honestly the first few minutes are a blur in my head. I might has well have been meeting Brad Pitt or James Franco for all that matter. The man is a super-star celeb in my head!

The first question he asked was “So, who found your Tarlov Cysts?” He asked me several questions about my symptoms and did a physical exam. He asked me to stand on my tiptoes, one foot at a time. When I did, my legs shook uncontrollably (and it wasn’t because I was excited.) Michael said my right one was shaking much more than my left. Dr. F explained what Tarlov Cyst Disease was and how it affected patients. I had researched that so much, that inside I was saying, “Ok, ok! I know all of this. Let’s hurry up and get to the good part! My MRIs!” Next, he took us into the hallway to look at them. I had lumbar and pelvic (with and without contrast) MRIs. I was so excited to finally have someone to show me in detail where they were and how big they were. They were on my S1/S2 sacrum levels. Two were at least over 1.5 cm but not too much over. You could also see on the MRI where two more smaller ones were forming in between them. He told me that one of the large ones is on the right side, which explains why my symptoms are worse on the right. (Remember my right leg was shaking the worst?) But, my symptoms on the left side can also be explained by the location of the others. I asked if I only had four and he said it appears that way from the MRI, but we wouldn’t really know for sure until he went in there during surgery. Sometimes they hide in clusters. The cysts have caused erosion and deterioration of my sacral spine.

We went back into the room and he told me that I am a candidate for surgery. (Meanwhile, I was screaming inside like a Beadle-maniac.) He explained the details of the surgical procedure. You can't remove the cysts, because they ARE your nerve roots. It is done through minimally invasive surgery through around a 2 inch incision. First, he would remove part of my sacrum. Then, he would go in, and meticulously treat each cyst, even the little ones. He would open up the cyst (nerve root filled with cerebral spinal fluid), plug the hole where the CSF was entering with some of the fat in my back, drain the cyst, suture it, then wrap it with bovine pericardium so that it could not come back. Keep in mind people, he’s doing this all microscopically. Imagine how tiny a normal nerve is – around 1mm. Lastly, he would put a plate over my sacrum that would gradually dissolve over a year and create a scar tissue that would protect that area. During the whole procedure, a neurologist would be in the room performing an on-going EMG monitoring my nerves. (Glad I’ll be out for that. Been there, done that. It was definitely not something I wish to repeat.) Shrinking the cysts gives the surrounding nerves room to regrow and heal.  The surgery could take anywhere from 2-3 hours depending on how many cysts he finds. Sounds good to me! I’m all about some bovine pericardium! I love cows! Let’s do it!

Let’s Fly to Dallas Ya’ll!

During this trip, I had the incredible blessing of meeting two Tarlov “cysters.” God has miraculously put Anne in my life through a mutual friend. She has been an encouragement and given me lots of tips, both spiritually and physically. While we were in Dallas, we got to meet her and also see my old friend Nikki who I grew up with. After spending hours on the phone with Anne, it felt like I was meeting an old friend.  There is no doubt that God knew what He was doing when he led us together. It was very validating to see someone else laying on the couch asking their husband, “Honey, can you bring me that?”  The story of our lives! Michael has never doubted that I’m making this up in my head. But, still, I couldn’t resist laughing and saying, “See baby! I’m not making this up!”  I’m sure it was encouraging to Michael to know he isn’t the only husband out there who has to be a servant slave to his wife!

I also had connected with another cyster on the Tarlov Cyst Disease Facebook group and she is from Asheville. We don’t live too far away from each other, so after our ordeals are over, I know we will see each other again. Though we were both hurting and in pain, we still pushed through it to not miss the opportunity to meet each other. She is also a woman of strong faith and we all help each other through battling this nasty disease. We both sat on our tush cushes at the Gas Monkey Bar and Grill and shared how this disease had affected us. We prayed before our meal and, again, God’s presence was with us. It was a great comfort to meet another friend who understood firsthand what I was going through.

I have to say, even though ALL of my TC friends warned me, I was not mentally prepared for the toll this trip would have on my body. I can’t explain how I felt. I knew beforehand I couldn’t do much and had to stay in bed most of the time and only leave the house when absolutely essential or I would have a nasty backlash. But, for some reason there was still a disconnect in my mind. I was disappointed that I couldn’t handle it like I normally would and had unrealistic expectations. It was definitely a wakeup call, that even though I feel ok sometimes when I’m in bed, I’m not. The impact of pushing myself too hard not only leads to pain and fatigue, but intense muscle spasms. While we were in Dallas, I had to see something! I mean, how can you travel to Dallas twice and not say you’ve seen a single thing!?! So, we drove by where JFK was assasinated and ate lunch in the art district. After that we went to the Gas Monkey Garage from the show Fast and Loud (Sorry, I’m a girl. I had no idea what this show was.) As we were crossing the street, the guy from the show literally almost hit Michael when he was trying to turn in. We bought some souvenirs for the kids since Conner is a fan of the show too. Every other minute in Dallas I spent in the hotel room bed. On our way home from the airport, my legs were weak and unstable and would shake when I stood or walked. The worst was when we were waiting for our flight and my legs began shaking uncontrollably. Like NUTS! I’m sure people probably thought I was some kind of drug addict or something. Especially since I had this nice big bruise on my arm from my MRI with contrast injection gone wrong. I’d push them down to make them stop, but then my calf muscles would shake just as badly. Even my hands were shaking. Luckily, it calmed down after about an hour.