I was trying to think of a title for this entry. I wanted to write/scream, "I AM BETTER!" with decorations and balloons, but that isn't altogether 100% true because how do you define "better?" But, yes. I am most definitely, absolutely, living life, walking-theme-parks and roller-coaster-riding BETTER. How do I catch you up without writing a novel? Sorry. I have to write a novel.
So, how long did it take from surgery until I was "better?" I don't think I realized I was "better" until I took my boys to Orlando to visit my Mother-in-Law this past May, 2017. (Surgery was January 13th, 2016.)
We visited Thanksgiving 2016 (10 months post-op) and went to Disney and Legoland and I went all day and rode a scooter but also rode all of the rides, including...ROLLER COASTERS! I felt so thankful to be there and have that experience with them. Especially since my youngest had never been. This was during the time when I was just starting to re-enter society and small things were big achievements. I was driving occasionally again but only short distances. Short trips to the store. Maybe drive myself to an appointment here and there but rarely. Those were big milestones. I had driven once and gotten stuck because my right leg and piriformis muscle locked up and started hurting down the back of my leg like you know what. The fear of that happening again kept me close to home since then. I was still having up and down days and making commitments was pointless because I could not predict if I would be able to attend or do anything on a certain day. I missed a lot of events I really wanted to go to because of bad days. There really wasn't a rhyme or reason to it. Sometimes I could tell it was the weather but other than that, just random. One day I might be able to drive to the store. Then be in bed for 2 days straight. Some days, taking a shower was a milestone. To say I had to lower my self expectations is an understatement.
Yep! I'm crazy!
I dove right in and said this is either going to kill me or be a lot of fun. It was a lot of fun. Skipped the wooden ones though. I think they should give handicapped people who survive Disneyworld a certificate of Achievement. It sure felt like I deserved one! I was so proud of myself! I was tired. Hurting by the end, but I made it. I had to rest in bed for a few days afterwards. But, the prize was seeing the excitement in my kids' eyes and watching their faces light up when they lit the castle with Christmas lights.
At 12 months, I was able to tolerate a long car
ride and we went to the beach for a few days. However, the entire time that I traveled was spent in the back of our van, laying on an air mattress placed on top of foam and surrounded by pillows. I didn't do very much and spent most of my time in bed but it was still good to see the kids with the rest of the family.
I don't know exactly how to define better. I am still taking opioid medications and have to in order to live my happy out-and-about days. However, I think I am getting close to being able to come off of them. I have more days where I skip taking my morphine. But I am on an ER so it's hard to tell unless I were to just skip that and see what happens. Since things are still up and down and winter is the worst time of the year for me and I've developed more health issues and pain, my PM doctor and I decided this time of year might not be the right time to try it. But, they help me function and live a normal life. I don't feel any mental side effects from them anymore and haven't for years. Eventually, for some, your body gets used to it. But, if it helps me live a normal life and be with my kids as opposed to being in bed in pain, then I will continue to take them. But dang I can't wait to get off of these so I can have a giant glass of red wine. Have you seen the wine glasses they sell that are basically a glass bottle with a glass on top? We got one as a dirty Santa gift. Man, I can't wait to be off of these darn things.
So do you define better as when you have no pain and you need no medication? I don't. Before surgery I had a lot of pain while on opioid medication and now, it's gone. I rarely have any TC related pain anymore. I have the random "flare up" that you will hear other TCers talk about. Is "better" when you no longer have flare ups? I don't think so on that either. I think of it like this. Those of us who went through surgery, went through a huge trauma in our body. To make the major stenosis of every single one of our sacral nerves better, the nerve surgery we had essentially had to make things worse to make things better. Cutting into a ballooned nerve, draining it, packing it with fat, suturing it (YES, SEWING UP A FREAKING NERVE!! Can you imagine this?), then wrapping it in bovine pericardium (Cow heart tissue) is DEFINITELY making things worse and tripping the heck out of those nerves. And don't forget the replacement of the outer sacrum with the dissolvable plate and screws. Imagine a person who has neurological symptoms and pain and had to have back surgery because a herniated disk caused stenosis (narrowing of the spinal canal that touches a nerve. ONE nerve. It TOUCHES A nerve.) TCers sacral nerves are completely squished because those evil greedy space mongers take up the entire spinal canal in most all cases. Multiply that herniated disk and 1 nerve times 8 or 16 and that's us. Depends on how many cysts you have and where they are.
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| Do NOT try this at home. |
We visited Thanksgiving 2016 (10 months post-op) and went to Disney and Legoland and I went all day and rode a scooter but also rode all of the rides, including...ROLLER COASTERS! I felt so thankful to be there and have that experience with them. Especially since my youngest had never been. This was during the time when I was just starting to re-enter society and small things were big achievements. I was driving occasionally again but only short distances. Short trips to the store. Maybe drive myself to an appointment here and there but rarely. Those were big milestones. I had driven once and gotten stuck because my right leg and piriformis muscle locked up and started hurting down the back of my leg like you know what. The fear of that happening again kept me close to home since then. I was still having up and down days and making commitments was pointless because I could not predict if I would be able to attend or do anything on a certain day. I missed a lot of events I really wanted to go to because of bad days. There really wasn't a rhyme or reason to it. Sometimes I could tell it was the weather but other than that, just random. One day I might be able to drive to the store. Then be in bed for 2 days straight. Some days, taking a shower was a milestone. To say I had to lower my self expectations is an understatement.
Yep! I'm crazy!I dove right in and said this is either going to kill me or be a lot of fun. It was a lot of fun. Skipped the wooden ones though. I think they should give handicapped people who survive Disneyworld a certificate of Achievement. It sure felt like I deserved one! I was so proud of myself! I was tired. Hurting by the end, but I made it. I had to rest in bed for a few days afterwards. But, the prize was seeing the excitement in my kids' eyes and watching their faces light up when they lit the castle with Christmas lights.
At 12 months, I was able to tolerate a long car
When we flew back to Florida in May, 2017, we got to Universal Studios around 8:30 am and I decided I was going to walk as long as I could and then go back and rent a scooter. We purchased fast passes because we knew it would be worth it not to have to wait in line, especially with my condition. We were only going to be there once. Around 9:00 pm, we were tired. I was tired and had to sit on a bench towards the end of the park. But who gives a rats patootie? Because guess who walked the entire Universal Studios and rode the roller coaster and all of the rides and never got a scooter? ME!! That was the moment. That was when I realized, Oh-my-freakin-gosh! Did I really just do that!? I think I'm finally better!
You have to understand, after living with pain for so long and being unsure of what your "limits" are because they change everyday without notice or even post-it notes, there is an element of fear. You are afraid to do things because you fear the pain that may/will come after. So, in a way, the pain controls your life and even your probable life. So, you just have to say, screw it. I'm going to hurt anyway. I will not let fear run my life and just jump in head first. Not an easy thing. I sounds like I'm an expert at doing that. I'm totally not. I'm more of a belly flopper most of the time.
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| The wonderful day I said "Aha!" |
I don't know exactly how to define better. I am still taking opioid medications and have to in order to live my happy out-and-about days. However, I think I am getting close to being able to come off of them. I have more days where I skip taking my morphine. But I am on an ER so it's hard to tell unless I were to just skip that and see what happens. Since things are still up and down and winter is the worst time of the year for me and I've developed more health issues and pain, my PM doctor and I decided this time of year might not be the right time to try it. But, they help me function and live a normal life. I don't feel any mental side effects from them anymore and haven't for years. Eventually, for some, your body gets used to it. But, if it helps me live a normal life and be with my kids as opposed to being in bed in pain, then I will continue to take them. But dang I can't wait to get off of these so I can have a giant glass of red wine. Have you seen the wine glasses they sell that are basically a glass bottle with a glass on top? We got one as a dirty Santa gift. Man, I can't wait to be off of these darn things.
- Side note: Some of you have emailed me and asked me what other medications I am on. Aside from an extended release opioid and an immediate for breakthrough pain, I also take 75mg of Lyrica, 120mg of Cymbalta, 50mg Topamax, cyclobenzaprine, 600mg Gaba every 8 hours and 500mg of Naproxen every 12 hours. I also take medication for sleep and anxiety and I do believe those help as well during the night.
So do you define better as when you have no pain and you need no medication? I don't. Before surgery I had a lot of pain while on opioid medication and now, it's gone. I rarely have any TC related pain anymore. I have the random "flare up" that you will hear other TCers talk about. Is "better" when you no longer have flare ups? I don't think so on that either. I think of it like this. Those of us who went through surgery, went through a huge trauma in our body. To make the major stenosis of every single one of our sacral nerves better, the nerve surgery we had essentially had to make things worse to make things better. Cutting into a ballooned nerve, draining it, packing it with fat, suturing it (YES, SEWING UP A FREAKING NERVE!! Can you imagine this?), then wrapping it in bovine pericardium (Cow heart tissue) is DEFINITELY making things worse and tripping the heck out of those nerves. And don't forget the replacement of the outer sacrum with the dissolvable plate and screws. Imagine a person who has neurological symptoms and pain and had to have back surgery because a herniated disk caused stenosis (narrowing of the spinal canal that touches a nerve. ONE nerve. It TOUCHES A nerve.) TCers sacral nerves are completely squished because those evil greedy space mongers take up the entire spinal canal in most all cases. Multiply that herniated disk and 1 nerve times 8 or 16 and that's us. Depends on how many cysts you have and where they are.
But, "Those don't cause any symptoms," says the Know-it-all Neurosurgeon.
"Then why do my symptoms match the dermatome chart exactly where my cysts are located?"
"Oh, Um, Cough, Cough, that's not causing your problem. My steller outdated education told me so. (Didn't she see my prestigious publications and awards in the waiting room?) You've been reading too much on the internet."
"Yeah, well I found this girl on the internet who went to a guy named Dr. Feigenbaum in Dallas, Texas and she had surgery and now she's better. And he's treated over 3,000 patients and there are support groups on facebook where hundreds more of his patients say they had surgery and are doing better too."
"Fairytales! Don't let that man touch your back! He's probably just out to make money. (I'm just secretly jealous that I didn't come up with something like this first. Lemony Snicket!)"
(Ok, whatever dude.) "Thanks (for your worthless input.) Can I have my MRI back please?" (Thank goodness I starred Dr. F's website on my phone so I can call them right now.)
"Then why do my symptoms match the dermatome chart exactly where my cysts are located?"
"Oh, Um, Cough, Cough, that's not causing your problem. My steller outdated education told me so. (Didn't she see my prestigious publications and awards in the waiting room?) You've been reading too much on the internet."
"Yeah, well I found this girl on the internet who went to a guy named Dr. Feigenbaum in Dallas, Texas and she had surgery and now she's better. And he's treated over 3,000 patients and there are support groups on facebook where hundreds more of his patients say they had surgery and are doing better too."
"Fairytales! Don't let that man touch your back! He's probably just out to make money. (I'm just secretly jealous that I didn't come up with something like this first. Lemony Snicket!)"
(Ok, whatever dude.) "Thanks (for your worthless input.) Can I have my MRI back please?" (Thank goodness I starred Dr. F's website on my phone so I can call them right now.)
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| Before and After S1 S2 Surgery |
So, of course that is traumatic and is going to take time to heal. They said it takes 6 months - 2 years
to recover. I personally think we will be dealing with Tarlov Cyst Disease our entire lives, even after our cysts are treated. The surgery does not cure the disease. I think we will continue to have flare ups. You hear about people who were injured in sports when they were a kid and as they get older, the injury returns and causes them problems and more pain, like arthritis or locks up their joint and they can't get the same range of motion they once had. I imagine our bodies will respond the same to Tarlov Cyst Surgery. Our bodies have been injured to treat an injury and I think there will occasionally be times, like when the weather changes, or we drive a car for 8 hours or do some sort of exertion that our bodies don't like, we might get a flare up. But I am ok with that because the trade off has been life changing. Before surgery, I had no life. I could not participate in life and was watching it go by from the window in by bedroom. I saw my friends going out and posting their pictures on facebook and I knew I would have been there too if I didn't have this stupid disease. I was missing my children's school activities, school programs and was not playing any kind of active role in parenting my children aside from talking to them from bed and seeing my youngest when he came home to stay with us on weekends because I couldn't care for him during the week. He would ask if he could cuddle with me and I could barely stand for him to touch me because I was in so much pain. He was a part from our family and it wasn't right. I felt like I was cheated 2 years of his life. I still do feel like I was.
But, now, I move forward. I can take care of my kids again. I can shuttle them around. I can take them to playdates and meet other moms. I can go to school functions. We've had birthday parties. I've already gotten to go on field trips with both boys' classes. My son can cuddle with me and it doesn't hurt anymore. My life has pretty much been restored. So, for me, surgery was worth it. I would say definitely 100% it worked. I have Dr. Feigenbaum and God to thank for having my life back. I feel so blessed that I found him when I did and was financially and physically able to go to Dallas to see him and have surgery. I can't imagine what my life would be like had I had to continue living with that horrible pain. This whole experience had put a huge strain on our family, my marriage and affected my boys. It has been hard. If you do not have a strong support system that can take care of you and anyone you are responsible for, or if you can't afford to take FMLA off from work for a good 3 months, my opinion is you should not have this surgery. You MUST have a support system. Otherwise, it will be very difficult and painful for you, your recovery will be slower and your results may not be as positive.
As a result of me being in bed for nearly 2 years, I have gained a lot of weight. 60 pounds. I look back at the picture of me when I met Dr. F. I can't wait to have that body back. I'm scared, what if I can't. I'm 3 months away from 40 as I write this now. I am seriously disgusted with myself. I'm embarrassed to go out because people don't recognize me because I look so different. I have always been thin natured my entire life until now and I don't know how to diet. Since all of this, I have developed other health issues. I had a cystocele and a rectocele and had to have surgery for both of those three months ago. The recovery for that sort of threw me back into the dark ages of TC recovery. It made it harder to recover and some of my symptoms even came back every now and then. I think that was because the surgery was in an area kind of close to the cysts. Probably shook things up a bit. But, it definitely sent me backward on my ladder of progress and it was an even slower climb back to the top rung. I also have since found out I have arthritis and bone spurs all up and down my spine that are equivalent to that found on a 60 year old who has worked hard labor her entire life such as construction or factory work. I'm quoting my doctor there. I've never even played sports! One of the discs is completely collapsed which might answer as to why my back hurts there. IDK. Stuff going on in my knees. I'm still having issues related to the rectocele surgery so I'm in the process of being sent to and orthopedic doctor and a gastro doc. I still wake up every day in pain. As soon as my feet hit the floor in the morning, pain radiates throughout my body. But, it's no longer the TC nerve pain. Now it's this other crap and I guess some of my fibromyalgia. Hopefully I can lose some weight and things will get better.
Don't know when I will update again but thank you to all of you who have written me and reached out to me to talk about your struggles with TC disease. It's reminded me I needed to put an end cap on this story. It doesn't END here, but I wanted you to know that it did have a happy ending. I'm sorry I did not write more details during recovery to tell you when I was able to do certain things. I have gotten a lot of questions about that. But, don't compare. Everyone is different and heals at different rates. God bless all of you and please keep emailing, commenting and sharing your story. I love hearing from you.
to recover. I personally think we will be dealing with Tarlov Cyst Disease our entire lives, even after our cysts are treated. The surgery does not cure the disease. I think we will continue to have flare ups. You hear about people who were injured in sports when they were a kid and as they get older, the injury returns and causes them problems and more pain, like arthritis or locks up their joint and they can't get the same range of motion they once had. I imagine our bodies will respond the same to Tarlov Cyst Surgery. Our bodies have been injured to treat an injury and I think there will occasionally be times, like when the weather changes, or we drive a car for 8 hours or do some sort of exertion that our bodies don't like, we might get a flare up. But I am ok with that because the trade off has been life changing. Before surgery, I had no life. I could not participate in life and was watching it go by from the window in by bedroom. I saw my friends going out and posting their pictures on facebook and I knew I would have been there too if I didn't have this stupid disease. I was missing my children's school activities, school programs and was not playing any kind of active role in parenting my children aside from talking to them from bed and seeing my youngest when he came home to stay with us on weekends because I couldn't care for him during the week. He would ask if he could cuddle with me and I could barely stand for him to touch me because I was in so much pain. He was a part from our family and it wasn't right. I felt like I was cheated 2 years of his life. I still do feel like I was.
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| Field Trip Day with Little Man |
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| Field Trip Day with the big kids. |
But, now, I move forward. I can take care of my kids again. I can shuttle them around. I can take them to playdates and meet other moms. I can go to school functions. We've had birthday parties. I've already gotten to go on field trips with both boys' classes. My son can cuddle with me and it doesn't hurt anymore. My life has pretty much been restored. So, for me, surgery was worth it. I would say definitely 100% it worked. I have Dr. Feigenbaum and God to thank for having my life back. I feel so blessed that I found him when I did and was financially and physically able to go to Dallas to see him and have surgery. I can't imagine what my life would be like had I had to continue living with that horrible pain. This whole experience had put a huge strain on our family, my marriage and affected my boys. It has been hard. If you do not have a strong support system that can take care of you and anyone you are responsible for, or if you can't afford to take FMLA off from work for a good 3 months, my opinion is you should not have this surgery. You MUST have a support system. Otherwise, it will be very difficult and painful for you, your recovery will be slower and your results may not be as positive.
As a result of me being in bed for nearly 2 years, I have gained a lot of weight. 60 pounds. I look back at the picture of me when I met Dr. F. I can't wait to have that body back. I'm scared, what if I can't. I'm 3 months away from 40 as I write this now. I am seriously disgusted with myself. I'm embarrassed to go out because people don't recognize me because I look so different. I have always been thin natured my entire life until now and I don't know how to diet. Since all of this, I have developed other health issues. I had a cystocele and a rectocele and had to have surgery for both of those three months ago. The recovery for that sort of threw me back into the dark ages of TC recovery. It made it harder to recover and some of my symptoms even came back every now and then. I think that was because the surgery was in an area kind of close to the cysts. Probably shook things up a bit. But, it definitely sent me backward on my ladder of progress and it was an even slower climb back to the top rung. I also have since found out I have arthritis and bone spurs all up and down my spine that are equivalent to that found on a 60 year old who has worked hard labor her entire life such as construction or factory work. I'm quoting my doctor there. I've never even played sports! One of the discs is completely collapsed which might answer as to why my back hurts there. IDK. Stuff going on in my knees. I'm still having issues related to the rectocele surgery so I'm in the process of being sent to and orthopedic doctor and a gastro doc. I still wake up every day in pain. As soon as my feet hit the floor in the morning, pain radiates throughout my body. But, it's no longer the TC nerve pain. Now it's this other crap and I guess some of my fibromyalgia. Hopefully I can lose some weight and things will get better.
Don't know when I will update again but thank you to all of you who have written me and reached out to me to talk about your struggles with TC disease. It's reminded me I needed to put an end cap on this story. It doesn't END here, but I wanted you to know that it did have a happy ending. I'm sorry I did not write more details during recovery to tell you when I was able to do certain things. I have gotten a lot of questions about that. But, don't compare. Everyone is different and heals at different rates. God bless all of you and please keep emailing, commenting and sharing your story. I love hearing from you.
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| I'm being transparent. Me 60 pounds later after being in bed for too long. I'll post a pic later after I lose weight. The field trip pics above were just taken this month too. Just depends on the camera angle. If I can tackle TCs, hopefully I can tackle 60 pounds! |
Natalie
Not sure if my other message posted...would greatly appreciate getting in touch with you as I believe our Tarlov cases are similar. Thank you
ReplyDeleteAbsolutely! If you go to the web version on the home screen, on the right menu at the very bottom is a form that says “contact me.” It goes directly to my email so then we can email each other.
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