About Spondylolisthesis Stories ...

Welcome! Spondylolisthesis Stories is a compilation of personal stories involving individual's diagnoses, experiences, surgeries, and life with Spondylolisthesis.


My hope is that this site may offer a voice and platform for those with the spine condition to share their personal stories with the medical community, fellow Spondyo patients, and the world as a whole. Spondylolisthesis Stories also provides a wide array of information, personal knowledge, support and ideas for those with Spondylolisthesis. Whether you were recently diagnosed, learning to live with the condition, making difficult decisions regarding surgical interventions, in the early phase of recovery following an operation, or further into your journey, this site covers it all!


In addition to general stories about this spine condition, personal stories which focus on the subject of Spondylolisthesis & Pregnancy may also be found. These shared experiences detail the matter of labor and delivery, and include women with both unfused slips and those whom have had surgery prior to pregnancy. It has been my experience that this topic is one which is shrouded in some mystery. By sharing these stories I hope we may be able to shed some light on the subject; offering guidance and ideas to those females with Spondyo who would like to become pregnant but fear the unknowns which this condition can create.


I am always seeking new stories and would love to hear yours! Let your story and voice be heard! Please contact me (Brenna), at spondyostories@gmail.com, in order to share your story here. If you are seeking additional help and support from others with Spondyo, please ask to join the "Spondylolisthesis and Retrolisthesis Support Group" on Facebook. *This group is closed, and therefore, offers a higher level of privacy and comfort for all members to share openly and without fear of judgement. It is open to anyone with Spondylolisthesis (or a family members of those with Spondylolisthesis) to join.


Below the Spondylolisthesis stories you will find several survey questions. If you have Spondylolisthesis, please take a moment to review these questions and select your answer(s). You are also encouraged to join in and participate by interacting in the "Community Answers" board, located at the bottom of the page. Feel free to post questions and comments, share stories, answer the questions already presented, and ask your own questions! I greatly appreciate your participation and look forward to reading your answers and comments!

Spondylolisthesis Stories ...

Sunday, April 1, 2012

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 na├»ve, 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 :)

1 comment:

  1. you are surely blessed Dena.
    I had spinal fusion in 2003 and i am pregnant with my first child. your story helped me decide the mode of delivery. Thanks. Thanks alot.

    ReplyDelete

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