Spondylolisthesis Story #14: Mindy

Mindy - Spondylolisthesis Story (Spondyloptosis) 

When I was 15 years old, I started having pain in my knees and my back.  At the time, I was playing volleyball and I thought that it was just normal aches and pains and I needed to "toughen up".  Towards the end of that volleyball season, I was performing worse and worse and I remember a couple times the coach pulling me out of the game - and I practically limped back to my seat.  I was more concerned about by knees at the time, they were popping and crunching like an elderly person's knees - not the knees of a 15 year old.  So, with my my mom's insistence, we finally went to a Orthopedic Surgeon to find out what was going on. 

I had x-rays taken of both my knees and my back. When I went back for the results, in one horrific day, I found out that my knee caps were out of place (born with it) and I had a grade IV spondylolisthesis at the L4-L5 level (most likely due to "stress fracture"). I was, of course, absolutely devastated. The Orthopedics' specialty was knees and he was very "surgery-happy." He said I needed to get the knees taken care of right away. In hindsight, this was such a bad idea ... but my back pain wasn't too severe yet and he really scared both my parents and I into getting the surgery.

I had the surgery done on one knee; a surgery called a "Lateral Release." It's a pretty serious surgery because they actually cut the tendons to try to put the knee cap into place. I was on crutches for 3 months and had to do multiple sessions of physical therapy. The crutches were extremely bad for my Spondylolisthesis, and I started getting more and more pain in my back. After the crutches, we started looking at what could be done for my Spondy. I got passed between several Orthopedics because nobody really wanted to deal with a case so severe. I tried other options instead: pain medicine, bracing and chiropractor. The pain medicine and bracing did nothing. The chiropractor was extremely positive that he could move the bone back into place. During that time I had traction and manipulation. I would walk into the chiropractor's office, but many times, when they were done, I couldn't walk out. I was so cramped up that they had to put me in a wheelchair to get me out of the office. I believe during this time I went from grade IV to complete slippage (although the doctors and MRI specialists had different opinions on what grade I actually was). They kept telling us that I just needed more sessions. I also had a cortisone injection, but it did not do anything for the pain. Finally I said enough was enough, and I decided to have surgery.

I was referred to an Orthopedic Surgeon at Iowa City and we booked in a date for surgery. By that time I was in so much pain (the sciatica down my left leg was absolutely excruciating) I had to quit school and try to study at home. I was very depressed, but I think because I was young I didn't really understand the severity of the situation. I lost a considerable amount of weight; got down to around 110lbs. I was angry, paranoid, and thinking suicidal thoughts. I just wanted it to be over, and I was relieved when the time finally came for the surgery.

The surgery I had was a spinal fusion using the bone from my hip (Autograft) and putting it in my back to fuse. The Orthopedic's reason for this approach was because I was still young and could still grow, so he didn't want to use any hardware. I was on the table for surgery almost 6 hours, face down. When I finally woke up from the anesthesia I couldn't open my eyes because my entire face was so swollen. The nurse brought in my parents to see me and I heard them say, "That's not our daughter." They couldn't even recognize me! I was in the hospital, I believe, for around 5 days. I don't remember what pain-killers they had given me, but they made me extremely sick. I threw up repeatedly and I broke out in a rash on my chest. Instead of weaning me off the pain medicine, they just stopped it. Because of this major surgery, my period had also started. Iowa City is a teaching hospital, so whenever the doctor came in, about ten students would also follow. It was so humiliating to be talked about in front of all these people! But, the worst part was when I had to get the body cast. They placed me, naked, on a metal bed frame in which the slots can be removed. My period was going crazy so I was bleeding all over the floor while they casted me for about an hour from below my chest to my knees. They cut holes for my stomach and for my privates. I chose the colour purple for my cast. I have to say, now I detest the colour purple! :P

I had to have the body cast on for 4 months. About a week into being at home, I cracked the hip of the cast. Instead of re-casting, they just put more casting over it, so I had one big lump on one side (which made it extremely hard to roll up onto that side). During this time I still tried to do my homework and keep up with my schooling. A few teachers would occasionally come over and help me, and my Spanish class even came to visit me one time. A couple times a week my dad would slide me out of the bed onto a reclining wheelchair so that he could wash my hair, and I could get on the computer or be wheeled outside for some fresh air. By the 4th month I was going absolutely stir-crazy (as you can imagine). There was a calendar next to my bed marking down the days.  

Finally the day came to get the cast off! At first they wanted to keep the top part of the cast to act as brace, so they removed only the bottom part. But, it was so loose from me loosing so much muscle, in the end they had to cut the whole thing off. The entire process took a very long time because it was so big, and the saw kept heating up so much. They then put me in a plastic brace and put me on a tilt table that slowly tilts until I was upright and not getting dizzy. I was given a walker and that was it. The doctors told me that there wasn't any physical therapist that could help, and that I would just need to learn to walk again on my own. My legs had atrophied so much, but I still wanted to try walking right away! I remember that as soon as we got home I wanted to go to the bathroom by myself. I had been standing up for about a minute when I got very dizzy and my dad caught me just in time before I hit the floor. I had to take it easy from then on, but slowly returned to moving about normally without the walker.  

I did some water therapy in warm water at a rehabilitation center to try to get some of my muscle back. The pain wasn't completely gone, but I thought it was just still healing. But, it was actually getting worse, and then one day I started have sciatica down my leg again. I was devastated all over again. I couldn't believe I had gone through all that hell and it still wasn't fixed! We went back to the doctor and they said they couldn't tell from the x-rays or mris if it was fused or not. It was so frustrating, but I wasn't ready for another surgery, so I left it.

It has been around 16 years since the surgery now and I've had my good and bad times. I wouldn't say that I have chronic pain as much, so I am still thankful that I had the surgery, but I do wish that the surgery had been done differently, specifically with hardware for a better chance of a successful fusion. I moved to Australia about 7 years ago, and during the time here I have had some bad pain. I went to an Orthopedic Surgeon and he said that nobody here would attempt doing a 2nd surgery on me because the risk of paralysis is too high.  He sent me to a pain specialist and I had a cortisone injection and it actually worked that time. For now, I just cope day to day ... Trying to balance being semi-active without causing pain. I don't always get the balance right, but I'm okay, and just thankful to be alive and to be able to walk! 

- Mindy 

Spondylolisthesis Story #13: Yana (Spondyloptosis)

Yana - Spondylolisthesis Story (Congenital Spondyloptosis) 

I first started to feel back pain when I was 9 years old while raking the driveway with my family. The back pain started to increase when I did physical activity and during the same period of time I started to have major night sweats. My mom was afraid that I had back cancer so we went to Doernbecher's Children's Hospital. The doctor there took an x-ray and didn't see anything wrong (I wasn't surprised, those x-rays were the worst quality). He told my mom that I was probably lying so I could have an excuse to sit on my butt and watch tv. Well either way, he was way off because we lived on 5 acres surrounded in forest, a field, and river. Plus, my dad was the only one could reach the tv and he rarely turned it on for us (And who would want to laze around the house when they had that much land to explore with siblings and cousins? Crazy doctor). I started to hate PE because my hamstrings started to shorten/tighten up. I couldnt reach past my toes anymore. One of the exercise we did was on the floor where we'd stretch our legs and back. There was a long line on the floor and a short line perpendicular to it, we would sit down with the bottoms of our feet lined up to the short line, then with our the back of our legs flat on the floor, we would stretch forward and see how far we could go. Because of my ever tightening hamstrings, I couldnt go far anymore. My teacher thought I was just being lazy. So he had two other students hold down my knees while he pushed my back forward to make me stretch further. He did it slowly, and even when i asked him to stop because my legs hurt, he kept going until I almost started crying. He still thought I was being lazy, so everytime we had this exercise he would have two kids come up and hold my knees down while he pushed me forward.

Anyways, much to my mom's dismay, I pushed through the pain and tromped and stomped my way around the woods (because who wants to be a kid stuck inside while everyone else was raising a ruckus having the time of their lives right outside?). When I was about 12 yrs old, the pain got so bad that I had to sit on a thick pillow that I brought to class. Even then, the relief only lasted for about 30 minutes before I started squirming again. I also started to get a slight boney bump protruding from my lower back. My mom decided to take me to another doctor to get an x-ray, MRI, and CT Scan done. When the doctor examined me, she saw that one hip was 1.5 inches higher than the other, but she couldnt understand why (The scans showed I had Scoliosis, but she didn’t think so bad to contribute to the higher/lower hip). So my mom put a sponge in the shoe of the leg that was shorter so that my hips would be aligned. My aunt near Seattle then suggested that I go to a Chiropractor that lived close to her. It took about 8-10 visits to him until I started to feel the pain alleviate. So I started going once every week (But I live 3 hours away from him and the gas was getting to be a problem). So it was decided that I would live with my aunt until the Chiropractor said it'd be fine to see him only once a month. It was a horrible 2 months (No offense to my aunt). The school I went to was terrible. It was around the time that Harry Potter came out. It didn't take long for people to start calling me "Potter" (I had short hair and roundish glasses - how original of them). The Chiropractor took his own x-ray and he diagnosed me with Grade 5 Spondylolisthesis (I compared what little I could find on the internet to the x-ray and noticed that my spine slipped a little past grade 5 and was already traveling down). Therefore, I actually had a complete slip, which is called Spondyloptosis. 

Fast forward until I was about 21 years old. The pain I felt was starting to be regular to me. Specifically lower back pain, and nerve pain in my right calf (rarely in my left). It only happened every couple days or so, and/or if I did any lifting. For a whole year, when I was 17, I had NO PAIN. It was seriously a miracle. I went to a Russian guy that my aunt heard about in Kansas, and for an hour he massaged my lower back and legs. He prayed with my dad and aunt over me, and I guess that did the trick. Then, when I was about 19 years old, I had another year without pain. I remember laying in bed, just overwhelmed with pain and worried about my future of continuous back pain. So I just started to pray like crazy. It felt like hours just laying there and praying. And as I was praying, I suddenly started to feel this strange popping in my back. The popping was light and soft, like bubbles (It's hard to explain). The next morning (when I usually have trouble getting out of bed and have to roll out of bed and land on the floor) I jumped out! I ran out to my mom and started running around (I think I freaked her out a little bit ha-ha). Then I did something that I dreamt about for years and years: I leaned over and touched my toes. My sisters and brother probably thought I went crazy because they walked in to see me bending over, touching my toes, and crying. That was the best year of my life. I was able to play long games of volleyball, I ran around our field 3 times a day, and I finally started to feel that everything was going to be alright.

Well, eventually the pain returned, much to my dismay. But it wasn’t as bad as it used to be. Then, one day in June, during my cousin’s graduation party last year (I was 21), the pain got a little bit worse. I was playing a short game of volleyball (a Russian staple ha-ha) with my cousins, and all of a sudden I couldn’t stand up anymore. I pretended that I sprained my ankle and rolled off to the side of the field. After a few minutes of laying there I felt better and stood up. But I didn’t want to fall down again, so I went to the picnic table and sat there pretending that I was bored with the game. From that point on the pain started to increase quite a bit. Rather than the pain just being in my lower back and right calf, it was now all the way from my right hip to my big toe, as well as from my left calf to my left big toe. The pain I used to have, used to be just this dull annoyance (like I constant bruise that I felt, or maybe it became like that when I became used to the pain). But now it's like someone is taking a handful of needles and just stabbing my legs/toes constantly.  

My mom couldn’t take it anymore and took me to a doctor at Kaiser Permanente. He took an MRI and a couple of x-rays. I saw that the slip had progressed even more since the last time I saw it. I even noticed a little bony shelf that had grown to hold the slipping vertebrae from progressing further. My doctor told me that surgery wasn’t necessary unless the pain increased even more, but if I wanted one then he could start getting an operation ready. So I went home with a troubled mind of whether I should get the surgery or not. Then one day, I had this one major attack that suddenly overtook me and I fell to ground. All I could see was black and white spots, and I was just writhing on the ground (imagine a bug that you spray with poison, thank goodness I was at home). That pain was so unbearable I seriously thought I was going to die ... Or at least become paralyzed. So I went straight back to the doctor and told him I wanted surgery. He told me okay. But he didn’t know how to do the surgery and had never heard of Spondyloptosis before, so he was going to have a colleague come up from California whom has done surgery for this type of thing A COUPLE OF TIMES (Vertebrectomy). I was like, heck no, I am going to do research and I’ll get back to you. I really didn’t want to have a Vertebrectomy because I have always been insecure about how my body looked. I seriously look like a box with limbs since my ribs are resting on my hips. By some kind of miracle I have always been a little slim, even though I rarely do any exercise and constantly eat my precious junk food. And with the Vertebrectomy they would just remove the overhanging vertebrae and slide my spine over and fuse it there.

So I did a little bit of research and found a doctor in Baltimore, MD., named Dr. Charles Edwards, II. His father started experimenting with a surgery in the 80’s I think, and he and Dr. Charles II have been improving it ever since. Their type of surgery is an 8 hour one where they slowly move the spine upward into its original position. I talked with Dr. Charles II and he said the success rate is very high. So I sent him all of my x-rays/MRIs/CT Scans and asked him if it was possible to do surgery for me. He said of course. So I cancelled my surgery with my KP doctor. When I made the call to cancel, he asked me who the other doctor was and I said Dr. Charles Edwards II in Maryland. He replied with “Oh him. Yes I’ve heard of Dr. Edwards II. Bye Yana.” I was irked! He heard of this experienced doctor and didn’t tell me about him?!

Anyways, since Dr. Edwards II isn’t with Kaiser Permanente (my mom works at their hospital so we have their insurance), I had to send a request to KP to approve and cover my surgery with Dr. Edwards II. They said no, but I could send an appeal. So that is what I did and I should be getting an answer in the next couple of days. My fingers are tightly crossed!!!

- Yana 

Spondylolisthesis Story #12: Glory Anna (Grade 3)

Glory Anna - Spondylolisthesis Story (Grade 3)

My story begins at a very young age. In fact, as far back as I can remember. When I was young if I did anything strenuous, the next day I would be suffering pretty badly. My sister and I would sometimes ride horses ... the next morning I would feel like I was hit my a semi-truck. 

I believe I complained about it hurting to my parents, and I'm sure to my siblings. But back a ways in time we didn't know what we know now and that children could even have such back issues. So it's not that my parents didn't listen, more that they thought I was just being a little whiney child ;). 

Through my teenage years I pretty much lived like a normal teen. Although I was in pain all the time, but it was bearable. I was able to do a lot, and now that I look back on it, I was probably was way too hard on my back.  When I was 17 years old I was in a very bad car accident. The car flipped numerous times, and I was thrown from the car. I didn't notice too much difference after it surprisingly. A fact which is pretty stunning! But, I am sure that it had some kind of negative effect on my back, as it was a horribly bad accident and I had to be medevaced to the hospital.

The years went on living in the same pain, but I kept living my life as if I didn't have any kind of condition. I met my very handsome husband when I was 18. We dated for 4 months then got married. A year later (when I was 19), had our first son, Ethan. Labor was tough but I opted for no meds, but ended up with 2mg of Stadol. It (as you can imagine) was very bad back labor. Afterward, what hurt most, of course, was my back! After a while, it got a little better and I kept on keeping on. 

When our son was about 1 1/2 we found out we were pregnant with out daughter Haley. 

I was very excited, but knew my back would be hurting that much more for the next 2 years.

And, sure enough, it did! In fact, towards the end of my pregnancy, I literally had to crawl to move about. We were living in a town where we knew NO ONE and I had a 1 1/2 year old to take care of, and let me tell you, that was one of the most difficult times of my life!

During this time I was fed up with the doctor's telling me that, “Most people in the world have a backache, here is a flyer of exercise’s you can do." So, I persisted. I told my doctor at the time, “No, I need an x-ray, and if you won't give me one I will go elsewhere to get one." And I got one alright! The doctor called me THAT SAME DAY and told me: ”I’m so sorry I didn't believe you. You have a serious back problem and you need to come in right away so we can talk about it." I just cried and cried, not because of my problems, but because someone finally listened! I knew all along there was something seriously wrong, and that I wasn't just complaining or exaggerating for no good reason. 

From there I got an MRI. At this point in time I was about twenty-two. The films showed that I had Grade 2-3 Spondylolisthesis, as well as nerve damage, bone spurs, and a few other issues. It has been a very tough road. Now, at this point, I was at least happy to know what was going on. And, even though it wasn’t good news, it was news. I had validation and some answers to my ongoing pain and related symptoms. 

From that point forward I have seen a number of doctors in my search to find the right one for me. I hope to find one who actually listens and will help me, not just give me pain meds to mask the pain. Although, I have to take some pain medication to control my chronic pain in order to be able to live my day-to-day life!

I am so happy I found the Spondyo support group! I have never felt so welcomed before! Also, I get a lot of answers from all the members! SO THANK YOU! I will be writing a Spondyo & Pregnant story VERY SOON! So all who are still in the baby making years should check out the page! It is amazing and VERY HELPFUL! Again, thank you to all of you for listening and helping as much as you do! 

- Glory

Spondylolisthesis Story #11: Libierth (Grade 1)

Libierth (Libby) - Spondylolisthesis Story (Grade 1)

I started feeling back pain on January 2007. I was about to start my first semester at Fresno State University when all of the sudden I was unable to walk straight. I had to be very careful with the way I was walking; I noticed that if I walked leaning towards one side, that the pain was more bearable. That lasted for a couple days and then it was gone. I thought it was over; but no! It came back month after month, after that. At first I associated it with my menstrual cycle. As time passed, the pain became more common. By this time, I was noticing that the pain would only come if I was standing for a long period of time in one position without moving. By November 2009, I was getting my back pain more frequently.

On April 2010, I decided that it was time to see a doctor. I didn’t know who to see, so I picked up an Internist. He sent me for x-rays. The interpretation was not clear at all, and they originally thought I had a herniated disk. He sent me to physical therapy for a month three times a week; a place I didn’t like at all. On my second visit, I asked them to cancel all my appointments because I was going to get a second opinion.

I went to Tijuana, Mexico. Again, I consult an Internist. She sent me for x-rays and CT Scan. I had those done and got the result on the same day she saw me. She saw my results, told me I had Scoliosis and that my spine seemed a little abnormal. She referred me to a colleague - an Orthopedic Specialist - who I saw that same day. The Orthopedist told me I had grade I Isthmic Spondylolisthesis, located at L5-S1. He sent me for physical therapy for a month, just like the previous doctor did. But, this time I picked the place, and I was very happy with it. They taught me the importance of making my core muscles strong. Since then, after knowing what I have, and that there was actually something wrong with me, I’ve been more aware of how long I stand up, how I walk, lift things up, etc. I am not in as much pain as I used to be because now I know my body and I learned how to avoid it.

My big concern now is becoming pregnant. I’m afraid the pregnancy will cause a further slippage.


- Libby

Spondylolisthesis Story #10: Nikki

Nikki - Spondylolisthesis Story 

Here is my story so far ... 

I am 21 year old female, small build weight.

In late September/Early October 2011 (a month before my 21st birthday), I bent down to pick something up when I was tidying … as I bent I got a bit of a niggling pain in my back. I thought “Aw, what is that?!” I just rested after until the pain went. I had never had any back pain before so just thought I had pulled it when bending.

A couple of weeks later I was walking quite quickly down the road for an appointment. And, as it felt as though I had taken a too big of a step, that’s when my right side of my pelvis/groin felt like it had just twisted around. It really hurt! I couldn’t just stopped walking so carried on. Within a day or so it then led to Sciatica in my right leg. It was just through the bum area. When I told my Dad he explained how he also suffered from it for years. He said if he twists or bends and traps something, that will cause it. He said it takes a few months sometimes for it to completely calm down.

After a couple of weeks of shuffling my legs because of the pain, I went to the doctors. She confirmed I had Sciatica, and gave me Diclofenac & Co-Codamol. After taking these, they didn’t do much of a difference at all, so a colleague recommended an Osteopath. 

After my consultation with my Osteopath (where we delved into my medical history), I realized that I've actually endured a few traumas to my spine. One being when I was about eleven years old. I fell off of a book shelf and hit my spine (in the lumbar area), but when I went to hospital they said it was just bruised, as nothing showed on the x-rays. After that, I thought that it was psychological that I felt the need to bend forwards when I was standing up for too long, and the fact I could no longer do cartwheels because I couldn’t keep my spine straight. She said that it felt like a fracture to my spine, but not a normal type of fracture, something known as Spondylolisthesis (a slipping vertebra), a tilted pelvis, and something wrong with the Sacroiliac Joint.

She did some work on it and it felt tons better. Straight away I was no longer shuffling my feet and my Sciatic pain had died down a heck of a lot. A couple of days later I was sitting on my sofa, as I got up and turned I had a massive click and fell to the floor in pain unable to move! A paramedic came out and got an on-call doctor to come to me ASAP to prescribe some stronger painkillers.

I went to the Osteo the next day and she said that everything she has adjusted before has been undone in that one turn.

Anyway, a few months of treatment and she recommended that I get an x-ray because she was worried something is still slipping. My Sciatica has gone from one leg to both. I have had a lot of muscle pain and pins & needles/burning in my lower limbs.

So I went to my General Practitioner who straight away felt the step in my spine. She referred me for an x-ray and she provisionally diagnosed me with Spondylolisthesis. I told my Dad, who told me that my Nan has Spondylosis, and her Dad had spine issues as well.

I had my x-ray and got the results after 1 ½ weeks! Nothing shown – no further action. GUTTED!

So I went back to my GP and said well, I have been told the x-ray should have been done with me both standing and maybe bending forwards, in order to show it better. I also said it should have been from an oblique angle. The doctor said she didn’t want to give me another x-ray, but will refer me to a consultant. I was happy with that!

While waiting for an appointment I saw a Chiropodist. He who told me I have "flexible flatfoot," so I got some shoe soles to help with them. My legs were in a lot of pain afterwards, but I guess that’s from building up the muscles that haven’t been working due to the rolling in feet.

I then saw the Consultant Orthopaedic Surgeon. He did the usual examination and was worried that it may too be slipping, and that I may have something pinching the Sciatic Nerve as well. He referred me for an MRI. Hurrah, I may get some answers!

In the meantime, I spoke to a doctor and told them I have been in pain when I go out and don’t know what to do, they said that I need to sit down as soon as it hurts. I explained that this can be very difficult because: 1. What if there are no seats? 2. What if the seats are hard with no back support (which hurts a lot!)? 3. What if it’s raining?! and 4. How do I get home from there if I am in too much pain to walk?! They then realized my concerns and suggested a wheelchair for when it starts to hurt. Which is what I have now done – and it has helped! I am now eating better because of it and still going out – not as much as before, but its' better than nothing!

So … when I had my MRI the lady put a wedge under my knees and my legs rolled outwards when she did it, but she didn’t move them straight, so I thought this was okay. I then got my results last week and they have said I have Lumbar Scoliosis and a herniated disk between the L5 and S1 vertebras. I, of course, was SO shocked by this! This has never ever been mentioned; not even the Orthopedic Surgeon Consultant noticed any type of Scoliosis. They have advised pain management!

So I went to my Osteo very frustrated and confused. She could not believe it was Scoliosis or a herniated disk. She got a colleague, who is also a trained Osteopath, to have a look. She felt the step in my spine and looked at my spine and said it’s perfectly straight, it’s just that step. She then did an examination, and there was no pain where there really should have been if I had a herniated disk or something. She tested things on my back asking when it hurts, etc. They both said it completely points to Spondylolisthesis.

She did a lot of massaging on my right hamstring, which has been very tight lately, and did the usual maintenance (on my pelvis, Sciatic Nerve and Psoas). She advised that I get a second opinion, because if I accept treatment for Scoliosis it would not be the right one for me, especially if they inject my disk with steroids when its not needed! She said it may have looked like Scoliosis on the MRI because of the unstable vertebra, or because of the way I laid (I laid straight on my x-ray and nothing showed on that?!).

Then I was at the London Marathon for my work on Sunday, and we have these fabulous Physiotherapists. I asked if they could quickly rub down my left calf, as it was VERY tight (I felt bad as I wasn’t a runner but they didn’t mind!). She explained how it was in a mess. There was a lot of tightness and some inflammation, which prevented her from getting all of the spots of muscle problems (I think they were in spasms or something of some sort). I explained everything that I am going through at the moment and she said she definitely thinks there is more going on. She said it sounds like Spondylolisthesis and can’t believe they have diagnosed Scoliosis.

I have also been advised by a few people to look up Fibromyalgia, as it hurts to scratch or poke my skin in most places! So perhaps it could be a combination?

Basically, for the past 7 months I have suffered with chronic pain that all started when I bent down to pick something up. It has led to a lot of muscles problems and Sciatica. Also, like I said, it has also meant that I have had to hire a wheelchair, which is causing me a lot of mental issues – which yes, may be depression, but it’s because of the pain and lack of answers!!

I also work full time, so that it causing me a lot of problems which I am unsure that I can cope with for much longer. It's a lot with all the back & forth to the doctors, etc., in my search for answers/diagnosis, so that at the very least I can do some correct exercises that will benefit me!

I recently called my Osteopath, who is going to write a letter (hopefully by my doctor’s appointment on Saturday morning) to suggest a second diagnosis.

This is obviously a difficult time for me, as well as for my Husband. It has caused a great deal of upset.

Work is very difficult and I am in a very difficult situation. I almost feel like I don’t ever want to come back in, as I just want to give up trying to fight the pain and feeling like I’m not a concern.

Oh, and I also have an appointment with an Orthodontist to look at getting a mouth guard, as I have a lower bite and cross bite. I’m hoping this will help with my jaw alignment, and ultimately help with my body alignment (like the shoe insoles!).

I think I have covered everything!

Any help is greatly appreciated!!! 

- Nikki

Spondylolisthesis Story #9: Justin & Natalie (Grade 4)

• Justin & Natalie - Spondylolisthesis Story (Grade 4)

  
  

  My son Justin was diagnosed with grade 4 Degenerative Spondylolisthesis. He is 11 years old. L5 slipped forward 98%. He had his first surgery in Sept 2011. Their plan was to pull the L5 back as far as they could without causing any nerve damage. I believe they were able to pull it back 75%. They then wanted to place a cage in-between L4 & L5 to replace the deteriorated disc. When they did that the nerves completely shut down. So they made the decision to take it back out. They nerves responded, but very weak. They tried to build it up with bone fragments. They placed a rod and some screws in to ultimately fuse L4, L5 and S1, and anchored it to his pelvis. It ended up being a 9 1/2 hour surgery. Pure torture! He looked absolutely horrible when he came out of surgery and was on a ventilator for almost a week.

  
  

  Due to complications Justin was in the hospital for 2 and 1/2 weeks then rehab for another 2 1/2. He had extreme burning pain in his legs. He had major nerve pain that slowed down his recovery process. They released him from rehab still in tremendous pain and barely walking, but they said they have done all they can now the nerves would just have to heal. He was getting the shooting nerve pain starting at the bottom of his foot. Mostly his left foot. And his right foot was weak and numb. They had him on Neurontin, Prednosone, Oxycontin and Oxycodone. We went back for our followup after rehab, and the CT scan is showing the screws are shifting and the disc that they tried to build up is now pushing against his nerves. But thankfully, after they gave him the back brace, higher dose of Neurontin and some steroids, the burning stopped. Started getting stronger and walking on his own by late Nov. early Dec., and in our visit in Dec. the x-rays did not show any change in the shifting. So we thought we were good and on our way to recovery.

  
  

  So my son is 4 months post op, thought it was getting better ... now PT is saying that he is regressing instead of progressing, and his legs have been giving out every once in a while. It's not an everyday thing, but they are concerned. Next step: Neurologists. :(

  
  

  He's 11! Way to young for all of this!! It's taken a toll on all of us!! The doctors at HSS have been great! Whenever I need them they answer within minutes! Take him same day! Very supportive. Just wish they could figure out what's going on quicker. Heading back tomorrow for EMG. Hope Justin will be able to handle it and get some kind of answers!!

  
  

  My son is only 4 months out and not 100 percent fused yet, so I am not sure if removing all the hardware would be a good idea?! But they have mentioned removing the 2 top screws because of the shifting that has occurred and what they believe to be causing his legs to give out. His doctor's are based at The Hospital for Special Surgery in NYC. At this point we are waiting for neurological testing to determine his weakness and regression. He still goes to PT 3x a week, but like I said, over the past 2 weeks they are saying he is regressing. So I guess we wait and see what neuro says ...

  
  

  We have already been to the surgeon. They are the ones recommending the neuro tests. He does have the foot drop, which was getting better, but for some reason has become weaker again. They are unsure if what's causing the legs giving out is muscular or the nerves. Yes this is all very frustrating!! Mostly started the first time his legs gave out, but they did x-rays and everything looked to be ok. Just said hardware was jarred which is causing the pain. This time his legs gave out, but thankfully, he didn't get hurt. He still has pain on a daily basis but it's not anything how it was or that he can't handle. Also stopped the Neurontin 3 weeks ago, so not sure if that has an effect on things. Hopefully the test results will give us more info.

  
  

  I was thinking the same with the Neurontin, but the surgeon does not seem to think so. Yes, there was some shifting of the top 2 screws back in November and they have been monitoring it. There has not been anymore shifting since even with the jarring. Their guess is that it could be possible for a certain movement from the shifting. They did talk about corrective surgery as well but they want to see the test results first. Find out Monday when we will go to see neurologist. Knew this was going to be a long recovery but thought we were coming to the end.

  
  

  EMG did not show anything they didn't know already. So they have now requested a cat scan. Legs have been giving out more often.

  
  

  Can't catch a break!! Cat scan didn't look good. L5 and S1 fused, but L4 is dangling. 2 screws are coming out, and there is no bone mass there. Certain movements push against his nerves which causes his leg to give out. So they want to go in and do corrective surgery on March 9th. Not sure what needs to be done until they get in there. They have 3 options. Trying to fix L4 alone if possible, but they may need to anchor to L3 as well. Another thing they may want to try is to put the cage in again, but this time go in from the side and through the muscle to avoid the nerves.

  
  

  Justin had his 2nd Surgery March 9th. A walk in the park compared to the first surgery. Only 6 days in the hospital this time, thank God. The moment they went in the top 2 screws in L4 just fell out. So the are pretty sure that was causing all the problems. It was a 6 hour surgery. They took bone graph from the hip to build up around L4, and put 2 new screws into L4. When they were going in, they tore the dural liner, so they had to repair that so he had to lie flat for 24 hours to be sure the tear heals. The side effects he has had from that were headaches and fever. From the surgery itself he had very little uncontrollable pain. He said the numbness in his right foot seemed to be a little better but it is still there, and from this surgery, he has numbness in his left leg as well. The Dr. say it should go away with time.

  
  

  So we are a month out of surgery and Justin is doing pretty good. Still has numbness in his left leg and right foot. He has also had some shocking pain in his back that has come and gone. He is still pretty weak. He had aqua therapy first time the other day and he couldn't get out of the pool. They needed two guys to go in there and get him. I am hoping all these little thing will go away, and when we go back on the 16th they tell us we are on our way to full recovery. Fingers crossed!!

  
  

  - Natalie & Justin (Justin is Natalie's Son. He is the Spondylolisthesis patient.)

Spondylolisthesis Story #8: Kristin (Multiple Slips)

Kristin - Spondylolisthesis Story (Multiple Slips)

For as long as I can remember I've had back and neck pain. When I was little my mom worked at a rehabilitation center and from time to time during the summer I would go to work with her and help do filing, or run little errands so that she could get her major work finished. One day, one of the therapists came to me and massaged my shoulder for a little and commented that my shoulder was, "too tight for being so young."  I was probably eight or so at the time. That was the first time I can really remember noticing it (the pain & symptoms associated with the Spondylolisthesis).

A couple of years later, when I was playing softball, I woke up with virtually no range of motion in my neck. Needless to say I went and played in my game that day. I loved softball, so nothing was going to keep me from playing.

In school I had been teased for the way I walked to the point where I went to the doctor. He told me I had flat feet, was going through a growth spurt, and told me to wear different shoes. In the meantime, I'm hearing it from my family about my poor posture. I kept telling them it hurt too much to stand up straight. Naturally that fell upon deaf ears. It was "growing pains."

A few years ago, after I moved to Tennessee, I had lifted something I shouldn't have at work, and felt a "pop" in my spine right between the shoulders. It's something that bothers me to this day.

Come last year, my back was so unbearable that I finally decided to go get it checked out. There were seven vertebral slippages: Two cervical, three thoracic, and two lumbar. My doctor also found that my L3, L4, and L5 are missing the transverse processes (what he called a "genetic malformation"), and there is no disc between the L5 and S1. The lower lumbar are also fused to my pelvis on the left side; later diagnosed as Ankylosing Spondylitis. I don't have the grade of slippage because, to be honest, I was getting hit with all this all at once, and along with everything else going on, I didn't get all the information. Also from that meeting with my doctor, he told me that if I planned on having children I could put myself in some danger. The pressure on the pelvis could cause I possible fracture. GREAT.

I'm not getting treatment for any of this for a few reasons. Right now I don't have insurance, and don't qualify for the lax Medicaid in Tennessee. After seeing my dad suffer with cancer and having to get bi-weekly infusions, I have reservations.

I don't know what the future holds right now; I only know what's going on in the present. And in the present, I'm having a lot of pain. I have days when my back feels like it's on fire. My spine is tender to the touch in certain places, and from time to time I have trouble walking because my feet feel like dead weights.

- Kristin 

Kristin's Pre-Op X-Ray with Multiple Spondyo Slips

Spondylolisthesis Story #7: Anna-Marie (Grade 2)

Anna-Marie - Spondylolisthesis Story (Grade 2) 


I just recently found out that I have grade 2 Spondylolisthesis with a slightly dehydrated/degenerated disc at L5-S1.  I'm only 19, so this whole experience has been just as emotional as it has physical.

It's REALLY good to know that I'm not the only person out there that has Spondylolisthesis. I am thankful they found it so early and that the slip isn't worse. But, when they did discovered it, it was quite a shock. See, I've had health problems since I was born and these last three years have been particularily difficult. Turns out that this is something I was born with and just didn't know it. I've always had back problems/pain, but we all just assumed it was growing pains of some kind. During last Summer, I started noticing some severe numbness in my toes when I bent over for more than a second. I put off going to see my Orthopedic doctor because I was currently in intense Physical Therapy for a ACL Reconstructive Surgery that went wrong. I didn't actually see my doctor until mid-November. When he told me about what they'd found, everything kind of stopped. I didn't really understand the full reality of the situation until they started talking about the "spinal guy," about eventually having back surgery, and how this was something I'd have to deal with my whole life. I was thankfully able to hold it together until I was out of the office. Right now, I'm just trying to take it day-by-day and be thankful for the times when I'm not in incredible pain. 


The severe pain and numbness started in December when I started Physical Therapy for my back. The pain got so bad that I couldn't get out of bed some mornings. They did an MRI and found the dehydrated(leaking)/degenerative disc. I stopped doing the PT because it was irritating the nerves so much. I was referred to the spinal surgeon, but he doesn't want to do surgery or anything because I'm so young (not that I want to have surgery), so he referred me to the best Chiropractor in the state. I'm going to be honest, when I was told to go to a Chiropractor, I was incredibly wary because I knew anything dealing with an unstable spine was tricky and this is my life. I went to the Chiropractor and he is very attentive to my pain and how he does things. I've gotten a new, more firm mattress, and it's really helped. I'm still hurting a good deal, but the pain has dropped significantly, though I still have my moments.

I do have tingling and shooting pains. Generally, the shooting pains go through my right hip, behind my knee, and to the bottom of my foot. I haven't really kept up with the patterns or anything, but I guess I should start doing that. I notice the numbness mostly when I've been sitting a lot, or if the pain levels are really high. I'll be honest, the numbness has been showing up much more often these last few weeks, though I kinda didn't realize until now ...

The spinal surgeon doesn't want to do surgery on my back because I'm 19. I think they want me to wait until I'm much, much older. I'll be honest, I am slightly concerned about it due to the fact my slippage is "unstable" (not that I want surgery, I just want to do the right thing for my spine).

Spondylolisthesis & Pregnancy Story #1 - Dena

Giving Birth Before and After Spinal Fusion

First of all, before I travel down this memory lane of giving birth, I just want you to know that I would do it all over again to have my 3 boys, whom are all so precious to me! It brings tears to my eyes as I type just thinking about not having each of them. I have literally had a "so-called friend" say to me: “How could you put your life and your child’s life in danger by getting pregnant again after your spinal fusion?" Because for one, I was told there would be no problems, go ahead get pregnant. The love for another child I wanted to give was indescribable! After fearing for the future before surgery and going through an entire year until I was strong enough, and I was pain free enough to get off the pain medications, I asked the question to my back doctors: “Can I have another child?” We weren't done having children, you know? When I was told yes, you can, I was beside myself excited! Scared? Of course! My previous two labors had been long and hard, but nothing like what was going to take place with my 3rd child! My husband and I had also talked about adopting. We had two sons, and would like to have a daughter, but would be happy with a third son. When I found out I could get pregnant again, we decided to give it one more try. Within a week after going off the pill I became pregnant. Being Pregnant has never been a problem for me - I always loved it! There is nothing in this world more amazing than feeling your child kick or move around inside your belly!

I am glad that I didn't know about my Spondylolisthesis before having my first two children. I was totally unaware. My only clues through life were if I laid on the floor my back would hurt instantly, and it would be hard for me to do the simple exercise of bending your legs with feet on floor and then lifting your buttocks. I remember once not being able to do this at all. Another memory I have is not being able to get off the couch for an entire day, but the pain went away. I say it’s from being young and naïve, and not thinking anything could be wrong with me! When I married I remember my husband telling me the first time he ran his hand down my back that something isn't right, your bone shouldn't be poking out your lower back like that. I remember telling him ... that’s been like that, I can't remember how long it’s been like that, but I’m sure its nothing; it’s not a tumor or anything, I think I’m just built weird. And, that was that! I had my first son in 1996. The cord was wrapped around his neck and he was stuck in the birth-canal for so long (I was in labor 22 hours I think) that he seriously looked like one of the Cone Heads from Saturday Night Live!! But his head quickly went back to regular shape after a few weeks. He weighed 8.5 lbs. But no problems or any concerns from any doctors.

My second son was the easiest birth. He was born in 1999. He weighed 10.5 lbs. The doctor joked about me sleeping with some football player to my husband ... and I can remember being irritated at the joke as I’m trying to push him out!! LOL. The only problem was that he was 10 days late and my water had to be broken and labor induced. Plus, the Epidural needle broke off in my back and they didn't know it. I remember saying, “the pain is coming back.” So, they would go to shoot more of the Epidural liquid in the tube that was attached to my back (it was taped to my back and they couldn't see it). Since it broke off, this liquid was bubbling up under the skin of my back and I could painfully feel it doing so! Finally they peeled the tape off to see what the problem was! Good Lord!! Thank goodness they got that fixed; the birth was fine! Easiest out of all three!

Oh yeah ... another symptom I remember having before I had children, but right after I was married, was my sciatic nerve pain. It would come on suddenly and I would literally have to drive with my butt cheek lifted up so that I wouldn’t have pain shooting down my leg while driving. This would only happen while sitting. This pain began to disappear as soon as I became pregnant with my first child, and was totally gone after I had him!

Okay, so I was symptom-free after having 2 children. Life is going along just fine ... No problems. I am one to always do for myself; very impatient, and will do heavy lifting or move things myself instead of asking a man's help at work, and even at home. The summer before I found out I had Spondylolisthesis, I remember finding a huge rock pile in our woods. I decided to get a wagon, fill it up numerous times, 

and proceed to put these rocks around flowerbeds! I would also carry 50 lbs of dog food in from the store ... whatever. If I could manage, I would do it! Then came that final “life-changing” day at work. Instead of waiting for a man to pick up and move this heavy box for me, I decided to do it myself. I felt my back that day instantly, like I pulled a muscle or strained it badly. So about a month goes by, and every day is getting worse and worse! I can't go shopping without sitting and resting, and grocery shopping for a weeks worth of groceries was undoable!  At this point I had my two boys, and they were 6 and 4 when I had my spinal fusion. Fast-forward to the day I give birth to my 3rd son (who is just turned 7 last month – 2/2012).  My oldest turned 15 in December, and my 2nd child turned 13 last month as well.

Keep in mind that when I got pregnant I knew that a C-section seemed like the smartest option.  If I could do it over and know what I know now - "That sometimes some doctors have no idea what the hell they are talking about!!" - I would have left that doctors office and went somewhere else!! But, I asked every time I would go in for a pregnancy check up if I could please be considered for a C-section. I was so happy when I found out that he was breech and I would get my wishes!! Well, sure enough, that little stinker decided to turn around in those last weeks and the doctors exact words were: "You already had to large babies and if this was your first then we would think of giving you a c-section, but you will have no problems even though you had a spinal fusion that will have nothing to do with it.” Did it??? They say no ... I SAY YES!!!!!!!!

Okay ... So I go to the hospital to have my labor induced – it’s a week past my due date - and it was up to me to wait it out or go to the hospital. I choose to have him on March 2nd. 2005. About 15 minutes after getting the Epidural I am beginning to have the slightest pain again, and then more intense pain coming back shortly thereafter. I kept saying the epidural isn't working right (I’m on my 3rd child and I am an expert as far as I am concerned!)!  They keep dosing me up with it and it works for a little bit then starts wearing off as quick as can be!! They’d never seen anything like it they said! Oh Great, I think ... Here we go again!  So it’s not working at all ... And at this point I am begging please just give me a C-Section - This isn't good!! The metal in my back is blocking the epidural from working!!! And then they decided to give me a Spinal!!! Which is supposed to numb you from the waist down ... Unbelievable! It doesn't work either!!!! By this time, he is coming and I am screaming like a lunatic cause he won't come out. I know it has been a loooonnng time with me pushing and nothing was happening!!! At this point I am getting so exhausted, as well as panicking knowing that I need an emergency C-section. It was mentioned, but apparently too late because it was at the point that this baby had to come out now! The doctor and nurses are panic stricken now. The doctor yelled at one of them that the baby has to come out now and a nurse jumped up on the bed and straddled my stomach. She pushed down as hard as she possibly could while the doctor pulled on my son's head and tried to get him out. He was stuck under my pelvic bone, I was later told. My son was seconds from dying that day. I guess you can look at it as that the doctor & nurses saved his life. But, I was angry for many years after about the whole ordeal, and felt if I would have been listened to, and had a C-section, that none of this would have happened!

That day when they yanked my son out he was limp, lifeless and blue. I wasn't allowed to hold him of course as he was rushed out of the room. I didn't know what an Apgar score was at that time, but his score was a 3. I later went to the Special Care Nursery where they were preparing to take an x-ray of his skull. No one had told me anything. I think they were trying to keep things “hush-hush,” so to speak. Anyways, I asked, “what they are doing and why?” They stated that there might be a possible skull fracture because of the indention to the head from the trauma caused by getting him out. He didn't have a fracture, but he was kept in Special Care because of head trauma and respiratory distress. He had red rings around his pupils. I forget what this was called, but was a result of the trauma. He cried a lot at first and was cranky from headaches they thought he must have. I will never forget the Pediatrician that came there to check him out telling me that it will be just a wait and see thing to know if there is any physical or mental damage done to my child.  To be continued ......

Continuation of Giving Birth Before and After Spinal Fusion (My Experience)

Last night when I signed off, I got to thinking about that night I gave birth to my 3rd son. Let me back up a bit. I would like to tell you a little more of that evening I forgot to share. Now mind you, IF YOU GET SQUIMISH OR OFFENDED BY DETAILS, AND THINK THAT I SHOULDN'T SHARE SO MUCH ABOUT MYSELF OR MY EXPERIENCE, THEN PLEASE, STOP READING NOW! ...

I think a lot of things are not talked about for embarrassment reasons, or people thinking differently of someone. I wish someone would had told me things, maybe warnings from doctors, or even listening to experiences from other women giving birth. So if by me telling you some things I went through might help you, or if you ever experience them you will know someone that has had the same thing happen. There is a huge comfort in knowing you are not alone. I welcome any questions and I am a very open person, as I am sure you will begin to realize as you read along.

First of all, let me say with my first child (I believe) I cracked my tailbone. It was over a year before I could sit on the floor without a donut pillow under my rear! With my 2nd child ... he was the 10.5 lb. vaginal birth, and my 2nd large baby. No one told me that a possibility was for your bladder or your uterus to drop. I guess doctors don’t want to worry or scare you, or maybe they just don't care enough. Anyways, after birth, when my periods got back on track, I proceeded to wear a tampon. This however, was a problem for me. It kept coming back out. I proceeded to get a mirror and give a ‘look-see’ at that area while sitting on a toilet (Never feel embarrassed to look at yourself ladies, it's not a dirty thing or something we shouldn't do...it's a part of our body). What I saw, but didn't know at the time, turned out to be my bladder protruding. It looked like someone was trying to blow a pink bazooka bubblegum bubble out my "coochie.” LOL ... that was suppose to be funny! Hope you are smiling at least, and I haven't grossed you out yet :). Fast-forward ... I went to my GYN and she told me what I was seeing, and with Kegel exercises, and over time, that my Bladder would shrink back up to where I would no longer see or feel it (I could also feel a "heavy" feeling down low in my belly if I sat on a hard surface). Well, sure enough that is what exactly happened. All good, no problems, but it took about 6 to 9 months, I would say, for everything to get back to normal.

Ok ... Fast-forward to after having my 3rd son 7 years ago. Since he was pulled out; yanked, torn, ripped, out of my body, this did terrible damage to me. Not only did my bladder and uterus fall some, but the visible outside damage was mortifying to say the least! I remember immediately after giving birth the doctor was attempting to sew the tearing that took place and I could actually feel this happening … as remember, the Epidural and Spinal never took it’s full effect and wore off within minutes after administrating. My Vaginal area was soooo swollen I remember saying it looked like a Bamboo's ASS! It was horribly swollen, and I also had a massive Hematoma there as well. It’s amazing all disappeared over I'd say about a week. I had a Vaginal Cystocele, Rectocele, and a Vaginal Prolapse starting too. All of this “corrected” it's self over the course of a year, I would say. Very slowly going back to normal. I think I was really lucky not to have to have surgery or any lasting problems from it. My OBGYN did tell me that when I got older my bladder or uterus will possible fall again, and have to have surgery to tack it all back up. Not surprising. Those were the least of my problems though! I didn't focus on myself; I had a little boy that need my care and lots of it in the days and years to come!

*Continued in my next document. Or by the time I am done...my book or Horror, Happiness and Hope!

Traumatic Birth ... Now What??

I was sent home from that hospital with so many questions, concerns, worries, and fears in my head. I had two little boys at home waiting to see their new baby brother. The “wait and see” approach by the pediatrician was insensitive I thought, and I did change practices and went to a more caring practice for my children. No one checked up on my son or gave me information about what was available out there if there were any physical or mental problems that should arise. I think the doctor and hospital was hoping to keep everything “hush-hush” in hopes that nothing bad would happen out of it all. I forgot to tell you that there were also forceps and a vacuum used on my son's head and neither worked. The vacuum flew off and spayed blood everywhere all over the room. My husband, mother, and mother-in-law, can tell their own horror stories of watching what went on that night they were in the delivery room. The bruising, lacerations and indention on my son's right temple were all a concern (caused by forceps), as a head ultrasound was done to see if there was any bleeding on the brain and an x-ray given. Then they also did a test called “Capillary Blood Gas.” This was done to see if there was any evidence of damage from being deprived of oxygen. All these tests came back normal, thank God!!! They were also monitoring him because of some rhythmic seizure activity which they noticed right after he was born. His leg, hand, and mouth, were making these movements at the same time. I found a lot of these things out AFTER I requested all of his medical records from the hospital.

             

 After arriving home with my son, over the days and months we watched him like a hawk of course! Wondering if every little thing was something to worry about or caused by the traumatic birth he had. Some things were it’s result, and some were just my obsessive worrying about him! He presented the following:

1) He had this stiffness about him. When I held him I instantly noticed that he didn't lay his head on my shoulder, as my other two sons had done.

2) When laying him on a blanket on the floor he would arch his back.

3) Then we started noticing that he couldn't lift his head for very long, and his head would lay over to the side on his shoulder (I know now it's because it hurt and he couldn’t' move normally).

Well, come to find out he had what was called "Torticollis" from torn ligaments in his neck. He was slow at rolling over and crawling, and from all of this he got behind in his overall physical development.

His pediatrician told me about a service called "FIRST STEPS” that would send Therapists to your home if you qualified for the service. It had nothing to do with your income, only with what your child needed! It costs a minimal amount compared to taking a child to a therapist somewhere. This service would last until a child was 3 years old. My son had Physical Therapy, Speech Therapy and Occupational Therapy.  We found out when he was 2 years old, with my persistence to get him a hearing test that the reason he was having speech problems and talking late, was because of fluid in his ears!! Nothing was developmentally wrong with my child! HE just couldn't hear us!! They told me what he was hearing was a muffled sound. Once this was taken care of everything speeded up and he caught up to where when was suppose to be. It took 2 days a week with the Physical Therapist, and a Speech Therapist came 2 days a week for 2 years, before his neck was corrected. He also had some sensory issues, and I don't know if it was related to the traumatic birth or not. But, his taste buds were off a bit; sour things weren't sour to him and he couldn't stand having anything sticky on his hands … still, to this day, he can’t stand it.  He hated things touching his bare feet, so this is where the Occupational Therapy came in to play. Once he was 3, no more problems and all was great!!!!

Anyways ... one more very alarming thing happened: He had 2 seizures. This was in

late September when he was 5 years old, and 3 weeks later it happened again, but it hasn't happened since then! Nothing on his brain scan showed up!  The Neurologist told me that since there is not evident reason why this happened - nothing wrong with the brain on the scan – that this was the least serious of seizure type and should go away. And, since it only happened those 2 times this positive outcome was more likely. Seizures have been known to happen after a head trauma, even years later ... and since my son's brain is growing, he said it was just like healing itself and “shorted out” for a second. If a child goes a year without having another, then the likelihood of it happening again is slim to none. IT’S BEEN TWO and 1/2 years!! But yes, I will always worry and always watch my child closely, and fiercely be his advocate!  Thank you for reading my long story. If it didn't help anyone or relate to anyone’s experiences, it at least helped me to write it. Thank you for letting me do that.

             

Also … one more thing ... I will never forget his Physical Therapist saying this about my son. It was the truest and closest thing anyone ever told me. That from my son's brain trauma, the brain got scattered and was like a hard drive on a computer that lost all of its memory and has to be reprogrammed! We had to show our son at that early age how to crawl and do certain things, sign language, clap ... he never sang songs ...but then he would catch on. He was VERY, VERY lucky not to have Cerebral Palsy or another sort of brain damage from this ordeal or permanent physical damage. All of that could have been avoided if someone would have said: “Hey, since you have Spondylolisthesis and had a very extensive Spinal fusion, you should have a C-Section, NOT a Vaginal Birth.” In my case, I should have been able to decide, not them!!

             

My son is a healthy, bright child with no side effects as of today. He is 7 and his name is TRENT. I thank God everyday for letting me keep him!

- Dena :)