Soul Cysters Brought Together!

I have left so many great stories out of my journey while I was having a difficult time focusing and being on a computer. One of these is that God continues to bless me during this journey and physically unite me with the Christian Cysters He placed in my path.

Lisa W and Me

From the initial onset of my disease, I had become friends with Lisa W, from Louisiana. From the get go, she was one of those people who God used to encourage me. He spoke to me often through her. I recently told her this and she said she didn't even know. I would have times where I was down or having doubts. From the first time I joined her support group on Facebook, she contacted me to let me know I was not alone and that she was always available if I ever needed to talk. Sometimes I would be scared. She would call me, not knowing what my thoughts were, and would say the perfect thing that was exactly what I needed to hear. She would share a Bible verse with me, and I would be blown away because it would specifically address whatever was going on inside of me.  Her mother also has TCD and had surgery with Dr. F as well. Both are women of strong faith and encouraged me many times.

Me and God's Miracle Worker (Reta)

Reta Honey Hiers, Executive President of the Tarlov Cyst Foundation was another person God put in my path early on. I was so thankful to have her in my life because, not only was she a wealth of knowledge and a great support, but God also used her to point me in the right direction. The fact that we connected when we did was another sign of God's perfect timing. If I ever had any questions, she had the answers. The woman has found God's purpose in her life and I am so thankful that she has answered His calling. I could share my spiritual victories with her and she would celebrate too. She prayed for me. She encouraged me with scripture. She was another rock to me.

Lisa called me up and let me know that her Dad had a work conference in Knoxville and they were going to tag along. Since Reta also lives here too, we all decided to meet up for the very first time. These ladies who I had spoken to for years on the phone and had spoken to each other, were going to meet and celebrate face to face. Lisa, Jeannie and I all had fully recovered and were off of our medications. It was inspiring to see Reta persevere and be active despite dealing with this disease.

L to R: Jeannie W, Kay B, Lisa W, Natalie (me) and Reta Honey Hiers

We had the most fantastic lunch together. We talked for 3 hours! Another blessing is that there is another nice lady, Kay, here in Knoxville who also has Tarlov Cyst Disease and is contemplating her options. It was great to meet her as well and I hope that Lisa, her Mom Jeannie and my success stories encouraged her. It is not always a clear choice to have surgical treatment and I know God will lead her to make the decision that is right for her. But, there is life after Tarlov Cyst Surgery!  (And you don't hear about it on Facebook because...why? We're all too darn happy, having fun and catching up on missed time to be on Facebook as we were before.) It was such a happy day for all of us. We share a common bond that is unbreakable.

Mama E and Me

Last July of 2017, when my family and I traveled to Orlando to visit his mother, we were able to visit Earline and Paul. (Earline had surgery the same day I did. That was so great to see her! Of course my kids took instantly to them and have been asking when we can see them again! We also got to stop by and see Susan and meet each other's children! I know we will continue to see each other more in the future.

I can't emphasize enough the difference that other cysters and mysters can have in your life with TCD. We share a rare bond and face great challenges that most other people, let alone doctors, cannot understand. It's a disease is unlike any other. The support and encouragement from other TCers is so important because we know what it's like to suffer from chronic pain that's more than just a herniated disc or a joint replacement. We know the frustrations of having our symptoms rejected by the medical community. We know the huge difference between "back surgery" and "spinal nerve surgery." We know what it's like to have this disease rob us of our lives and the strain it puts on families and relationships. Through the experiences of others, we can learn what it's like pre-surgery, post-op, recovering and beyond. We can reassure each other that "Yes, I am experiencing that too. No, you aren't crazy. Wait! I'm not crazy!? Well, yeah. I'm still a little bit crazy but, it's not in your head!" I made it through this from my faith in God, prayers from others, my support system and the other cysters. It also gave me a sense of purpose to comfort those who were where I had been.

Catching up with my girl, Suzie Q!

I felt like this was God coming full circle reminding me, "I brought you together for a reason. SEE! I love you and want to bless you beyond what you can imagine would be possible!" But, it's like it says in Ephesians 3:20, Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us. Again, I never would have imagined we would have all been able to sit at the same table together sippin' on our waters with lemon! More icing on the cake from The Man with a plan who can do anything! Thanks be to God! He is good!

Comment notifications stopped working. Apologies for not keeping up with the blog.

I am so sorry to those who have posted comments and did not receive a response! I just learned that I was not receiving notifications. I just assumed noone was commenting and I wasn't receiving any hits on my blog. Boy was I wrong! There have been over 24,000 viewers! I can't believe it. It just goes to show that those of us who have been touched by this disease are so anxious for support from others and are hungry for information. I went through a period where it was very difficult for me to be on the computer and I didn't post. I'm so sorry for that. I'm better now and plan to pick up where I left off.
Gentle hugs and love,
Natalie

No matter where you go, there you are.

I would love to say I'm back to my 100% pre-TC surgery self, but I'm not for other reasons. I know at this point that my surgery was a 100% success. But, the chronic pain and living in bed lifestyle had its consequences. I developed mild atrophy in my lumbar spine. My piriformis muscle was still very unhappy from sitting so much. (That's in your buttocks.) My scoliosis began to strain my back muscles more. I gained 60 pounds over the last two years. I still struggle with stamina issues but not nearly as bad as when I was on 11 prescriptions. My back is so temperamental and mean to me. Such a drama queen of a back! Things like taking sheets and blankets off the bed and putting them in the washer, lifting a laundry basket, pulling the kitchen trash bag out of the bin, lifting or placing boxes of sodas in the bottom of my shopping cart, bending over for pretty much anything, hurt up my back. But, the good news is that I am in PT now and after 2 months, I can already tell I'm getting back on track. Most days are good days where I can run around to appointments and do errands, pick the kids up to school, etc. I'm tired and sometimes sore when I get home and have to rest. But, as long as I'm careful and don't do a lot of bending or lifting, I'm ok.

As I mentioned in a previous post, it wasn't only the pain and fatigue that kept me in bed. It was also the FEAR of pain. I was scared to do anything that could make that horrible pain flood my body. Sometimes I just went for it because I thought it would be worth whatever experience I was going to have. And sometimes, I was pleasantly surprised that I didn't have pain. I think it took me going through several experiences and milestones to help me get over the fear and see that I could be active without that backlash I had in the past. 

In April, my sons and I flew to Florida to visit my

Mother-in-law. Unfortunately, she got sick so I had to take the kids to Animal Kingdom by myself. I had come off of all of my medications by this point so my body would take a shocker from a long active day. I hadn't driven more than 30 minutes in over 2 years so I was very nervous about that hour drive and stand still traffic. But I did it and made it throught the day without problems. I rented a scooter for fear I'd crap out and ruin it for the kids. I'm glad I did. I rode roller coasters and felt great and lasted until it was late in the evening. I was exhausted and sore the next day and needed a recovery day where I did basically nothing.

Later that week, I took the kids to Sea World's Aquatica water park. Hol-eeeee Cow! I don't know how many flights of stairs I went up, also carrying my and my youngest son's mats. We rode a bunch of water slides, swam in the wave pool, played in the kids area and rode the rushing river (many, many times.) My body was hurting all day the next day and it took me a few days to recover from the entire trip. It was much more intense. But the point is that I did it! I honestly couldn't believe I was climbing stairs and carrying mats and tubes! And NONE of that would have been a remote possibility or reasonable expectation before surgery. When I came off of all of the medications and realized surgery was a sucess, I called my friend Earline who had surgery the same day I did. While we were healing I think, like many, she regretted having surgery because she felt like it made her worse and she had to have another surgery for another back issue. It took us both a lot of pain, frustrations, doubts and time. But I was thrilled to death when she told me she was doing great and back to playing tennis again! Yay Earline!! I couldn't even do that before I had symptoms!

The most frequent questions I am asked on Facebook support forums are: 1. How long did it take you to get better? 2. Are you glad you had surgery or do you regret it?

So, answers. #1. 15 months on lots of meds and around exactly 2 years I came off of meds. I could tell I was getting better because the backlashes from activity became shorter and shorter. I was gradually able to do more than before surgery without paying for it as much. Eventually, the nerve pain faded away, despite whether I was active or inactive.

#2. Without a doubt! I have no regrets. I made the right decision. (I had a little help from the Man upstairs making that decision. It was very clear what I needed to do.) I did have a lot of pain during recovery but I knew it would be that way before I went in. Sometimes it was worse but I knew it was a good sign. My body was still healing because when those nerves are healing and regenerating, it causes pain. Pain after surgery is a good thing. It was long and rough but at least I knew I was hurting while healing, not hurting while getting worse. But in the end, my Tarlov Cyst Symptoms are gone and I consider it a 100% success.

My challenges now are to build muscle strength and more stamina. I believe that, back when I was still on the medications, I had the same muscular "shock" that my body didn't feel until now when I'm active. But, I think the medication prevented me from feeling the full impact of long activity. 

So far, since I simply started to become more active and less sedentary, I've lost 10 pounds! I started the Keto diet 2 weeks ago which is supposed to help inflammation. Hoping to get back to my pre-surgery size. I'm sure getting some of that weight off will help my back issues as well.

I still have many things to share. Updates on research, other personal health related matters and some more God winks! Stay tuned for that in the upcoming posts. 

Baby Steps Eventually Turn Into a Mile. Surgery was a 100% success

I have been putting off this posting because I wanted to make sure that my health update is for real and not just another up time on the roller coaster ride of recovery. I have finally healed! Praise God for his love, provision, mercy, comfort and reassurance through his overwhelming presence through this 2.5 year ordeal. This post is very long but will encourage post-op Tarlov Cyst patients and I believe they will find this story very helpful. I'm just going to address my pain and medication and will update you on my current status in the next post.

My two year surgery anniversary was this past January 13th, 2018. My nerve pain had gotten so much better about 15 months out but I began to have a lot of back pain. So, I continued the medications, including the opioids.

Coming off of 7 medications, including narcotic opioids.

Around February, I had to visit a colorectal surgeon for some complications. He looked me straight in the eye and said the surgery I need is very painful and he was very hesitant to perform it because of the amount of opioids I was on. He said there would be nothing they could do to help my pain. I was on 120 morphine equivalent doses, which is the Tennessee State maximum allowed for non-cancer patients. That same week, I saw my psychiatrist and told him how tired I was all of the time and I had no energy. He said, "I hate to tell you this, but that's the pain medication." That same week, I also spoke to one of my good friends who is a physician's assistant. (I believe that's the highest provider next to a doctor.) We discussed all of the crap ton of medications that I was on and she told me the side effects of each. She said, "No wonder you are so tired and feel like crap!" It was a wake up call.

I came up with a little rhyme for what I discovered about pain meds. Opioids mess with the pain receptors in your brain. You become more sensitive to your pain. (I am a self-declared goof ball.) From the second I put my feet on the ground each morning my heals hurt, my knees hurt, my hips hurt, my butt and back hurt. The pain was debilitating. I had been so much better at 15 months post-op on the meds and they helped me function and have a normal life again.  (Refer to previous post on Universal Studios from dawn til dusk on my feet and riding roller coasters).

I took all of those conversations within the same week as a divine message that it was time to get off of the meds. I HATED HATED HATED being physically dependent on something that could make me go into withdrawal if something like a trip came up and I couldn't fill my prescriptions early. I hated being followed on the state registry where they flag you for some circumstances beyond your control (like when Dr. Feigenbaum prescribed me medication from out of state, or when you fill your prescription at a different pharmacy because yours is out or doesn't carry what your pain management provider prescribes). I HATED the thought that if I were in a car wreck and had to go to the ER, there wouldn't be anything they could do to help pain. I HATED the stigma. I HATED the thought of being treated like a drug addict. (Please refer to post about difference between physical dependency and addiction). All of the restrictions and regulations nearly make you a nervous wreck. I wasn't just physically dependent on the pain medication, but also 4 other non-narcotics. 

There was a progression to my healing. First, functioning without pain while on the medications. Second, I would have backlashes of shorter time or no backlash after being active. Third, I could tell the nerve pain was gone because I didn't feel it after my morphine wore off. I will say that around a year after surgery, I had to undergo an operation for a cystocele and a rectocele. I feel like that surgery and recovery threw me backwards on the TC healing timeline. I was feeling pretty well before that. But winter weather also didn't help. But, by the end of January 2018 (Surgery-Jan 13th, 2016), I weaned myself off of 60 daily mg of the morphine, which made up half of my daily opioids. I immediately started feeling better and the whole-body pain went away. That was another sign it was time for the narcotics to go. I was highly motivated and determined to get off of all of the meds. In February, my Uncle passed away and I needed to reschedule my appointment because we had to go out of town. When I called pain management, they said they couldn't see me until a month later! Ummm... oh crap! I told them I would go into withdrawal and what in the heck was I supposed to do!?!? It ended up being a blessing in disguise because they prescribed me Clonidine to take and cause my body to not have withdrawal symptoms. The end result was what I wanted anyway! I'll share more about that experience further down.

I started to gradually wean myself off of the 1800 mg (600mg 3x a day) of Gabapentin (Neurontin). That's a very high dose. It sucked I had to look up the physician information on the schedule for weaning off, but that's what I did. (Please don't do that. I would definitely recommend that anyone be under a doctor's care because it is dangerous. At the very least, call your pharmacist.)  I also started weaning off of other medications: Topamax (Topiramate) 50mg a day, Three 10mg Flexerils (cyclobenzaprime) a day, 75mg of Lyrica, and a high dose of 500 mg prescription Aleve every 12 hours.  3 flexerils is A LOT! I remembered that years ago, I used to take one pill for migraines and I'd feel like crap until the next day. Three!! I was also on a medication to help urinary retention that I started around surgery time for cystocele/rectocele. I was also still on my psychiatric medications and sleep medication I'd taken for years. That included 120 mg of Cymbalta (also used to treat nerve pain)  and 1mg of xanax twice a day. I have to admit the xanax helped take the edge off of the pain. I have no idea how I was functioning but I didn't feel the slightest bit drunk. I did however have trouble with short term memory. I would forget conversations. I still can't remember a lot of things that happened while I was on all of that. I also had a hard time recalling simple words. Words like "door," "shirt," "Gatorade." I'd point and get frustrated and say, "Ugh! You know, that thing...over there." Apparently, I didn't realize it, but I was speaking slower than I normally do. After I was off of everything, they told me I looked different, sounded different and they could tell I was back!

The week I started the Clonidine was also the week my husband had to go out of town for work. My Mom came over to stay and help with the kids. That was another God thing because little did I know the .3 mg of Clonidine 3x a day was going to knock me out and make me so weak I could barely walk to the bathroom. When my husband got back, he had to give me a bath because I couldn't stand to take a shower. Thank God AGAIN for his provision because my Mom was able to take care of me. I can see how God had the perfect timing planned out before I even knew it. Aside from that, I had no withdrawal symptoms, which is FAN-FREAKIN-TASTIC compared to actual withdrawal. After those 5 days, I was off of my (Opana) oxymorphone (the long acting opioid you can't split in half or it could literally kill you) and completely off of the opioids. By the time my appointment came around I was off of the Gabapentin, Topamax, Aleve, Lyrica and Flexeril. That's 7 medications!! I had been on a total of 12 medications!

My nurse rejoiced with me and was so happy for me. So were my pharmacists and friends. I was overjoyed and so happy that I was healed from my Tarlov Cyst Surgery. The journey took forever and felt like it would never end. Tiny baby steps and milestones took forever. But gradually, it got better.

I did have slight nausea and headaches for about 3 or 4 weeks after that and had to have another week of Clonidine. (But this time I asked for a lower dose and went with .1) My pharmacist said that he would expect me to have some of that coming off of as many medications as I was on. It wasn't too bad. Just annoying.

That's the story of coming off the meds. Next up, Where I'm at now.