Just diagnosed with Pars Defect after 10 years of pain (long)
Hi all! I'm new here and hoping for some advice. About 10 years ago, I was preg. with my 1st child and started having back pain. It got pretty bad, but the docs all told me it was "normal pregnancy back pain." They told me it was due to the normal separation of the pubis symphysis during pregnancy and that it would go away after delivery. I had a vaginal delivery with an epidural that failed to work. My back pain improved some, but I still struggled, especially with caring for an infant. During my 2nd pregnancy, my back pain was even worse. I was trying to care for a young toddler with some special needs (minor) and had to crawl around to take care of her all day long. I used a cane much of the time. I went to PT but only a few times, as it was impossible to find childcare and affording the co-pays was a problem as well. My husband helped some with household chores, but I was on my own most of the time. When my 2nd child was born, she was face up, and again I had issues with the epidural. She weighed 8 lbs. When I pushed her out, I thought my tailbone was going to explode. I actually feared for my life during delivery.
After my 2nd child, the pain did not improve much. The docs kept telling me it was just the "typical" pelvic separation from pregnancy. I really thought I must be a whimp if a "typical" pain was giving me so much trouble.
We've always struggled with infertility (meds, treatments, testing, surgeries, IUIs, etc.), so I had a lot on my mind during all these years. We were shocked when we were able to conceive a 3rd time and I was VERY concerned because my back was in such bad shape. But the docs kept assuring me I'd be fine. Around 22 weeks gestation, our baby girl was diagnosed with complex congenital heart defects and Down syndrome. It was a very chaotic pregnancy after that, and my back pain was not even on our list of concerns. I just managed by using my cane and a wheelchair when going anywhere that required walking. I struggled to care for my children each day, but I learned to ignore the pain and keep it to myself. My daughter was transverse and the placenta failed at 36 weeks, leaving me with almost ZERO amniotic fluid. They had to do an urgent c-section. I struggled to care for her, as she had lots of therapy and doctor appointments. I went to an orthopedic doc when my baby girl was just a couple of months old. I had a MRI that I was supposed to have years earlier (never had the time or the money). The doc told me I had degenerative disk disease and "some arthritis." My baby girl had open-heart surgery at age 4 months. Rare complications developed and she passed away (in my arms) two days later.
My DH and I had planned on being done with having children, but losing our daughter changed a lot of things. Amazingly, we were able to conceive again only 5 months after our daughter passed away. My back pain had improved a little, so I thought I'd be fine. I was wrong. Around 20 weeks along, I had to use my cane, a walker, and a wheelchair at times. I was miserable, but I had no help (other than when my husband was home). So I had get through it. The docs told me to go to PT, but I had no way of getting there (was not able to drive) and nobody to keep my children. At 36 weeks along, I slid forward in my bathtub and felt and heard a loud pop/crack in my tailbone area. Apparently, I broke it. I was home alone and had to drag myself out of the tub and to the bed. For two days, I was totally unable to walk. Then for the next few weeks, I walked with severe pain and with assistance. I went to see my OB for a regular appointment and told him how much pain I was in. He simply told me, again, to go to PT. He just didn't understand or he didn't believe me. At 39 weeks, my baby boy was frank breech (sitting in my pelvis), so a VBAC was out of the question. I had to have another c-section. My back pain did not improve in the few months after having my son. I finally was able to go to an orthopedic doc in a small town, nearby (we live in a rural area). He did some x-rays and told me my pelvis was permanently out of alignment (symphysis pubis diastasis). It is what happens when the typical pelvic separation in pregnancy does not correct itself. He said PT would not help and that the surgery to fix it was not usually very successful. I left feeling very defeated, as I knew how much trouble I was having every day, trying to care for a young infant and 2 children with some minor special needs.
Finally, I told my DH that I HAD to get another opinion. My DH kept our baby at his office while I visited an orthopedist in the city (an hour away). He did some x-rays and what he told me was a bit shocking. I have a Pars Defect (spondylolysis) fracture on the L5 vertebra. It was easily visible on x-ray. The doc told me mine has to be congenital because it was too significant to be from trauma. He said, "You would have had to be hit by a train to get a fracture like this." From what he said, I think I also have some slippage of the vertebra. He said I also have SI joint dysfunction and lots of arthritis throughout my back. He went on to tell me I have another congenital spinal malformation. My tailbone apparently never formed correctly. It does not curve at all - just goes straight down. So I'm pretty much sitting on the end of my spine all the time with a somewhat sharp point poking into the nerve-filled tissues below. That's why I was able to break my tailbone so easily just by scooting in the tub when I was pregnant.
The doc thought I had just started having pain and he was a little freaked out when I told him I'd been dealing with the pain for 10 years. He didn't quite know what to say and asked how I'd managed to have four babies and take care of all of them every day. I told him I've become a master of hiding pain. He said early treatment is so crucial with Pars Defects and didn't seem hopeful that my case will have a happy ending. He said I will need surgery, but I told him there is NO WAY I can be immobile for even a day. There is NOBODY to take over with my kiddos. Two of them have to have weekly therapy for their special needs and grief counseling over losing their sister. The doc wanted me to do some "spinal rest" for a while, but it just isn't possible. He said we'd try PT twice per week and then some injections (one x-ray guided). I don't even know how I will be able to go to PT. There is nobody to keep my baby boy or pick up my girls after school. I've asked for help from my church and got turned down (I think it is due to my girls' special needs...even though they are minor). Also, it is $40 per visit to the PT. We cannot afford that.
I also have fibromyalgia (was dx about 13 years ago), PTSD over losing my daugther, OCD, anxiety/panic disorder, severe depression, adult ADD, asthma and several other health issues.
Somehow, I've managed to carry and deliver 4 children...breastfeed all 4 of them despite all of their issues and mine....lift them every day...clean the house...and all the other duties of motherhood....all with a broken back that has caused me pain for 10 years. My new little guy is 7 months old and weighs 19 lbs. I carry him off and on all day...changing diapers...getting him in and out of his car seat, etc. How will my back ever get better??? I'm just not sure what to do. Nothing I've found online mentions going 10 years without treatment. Everything seems to indicate that people go in within weeks or months of having pain for the first time.
If you've read all this, thank you. If you have any advice, I'd appreciate it.
Re: Just diagnosed with Pars Defect after 10 years of pain (long)
Welcome to the board. You have certainly had more than your share of problems and I can imagine the spine specialist was shocked when you told him you'd been coping for over ten years.
I'm afraid I don't have any good suggestions that will help you out, but I wanted to make a couple comments. I imagine there are other things going on with your lumbar spine that may be at least as significant as the pars defect, if not more so.
I'm not quite sure why your surgeon told you a pars defect needs immediate attention. A pars defect in and of itself is not necessarily something that requires treatment, nor does it always cause pain. Often people are not even aware they have a pars defect at L5-S1 until they have a MRI for other purposes, and it is noted on the radiology report. (If the defect is congenital, people live with it for their entire life -- mine didn't bother me for about 48 years, and then a bit later, it did. I still waited about five years before doing anything.)
When it becomes problematic is if there is "slippage" and the spine becomes unstable. If it has slipped by more than 50%, it is usually a bigger problem, and often requires a fusion surgery to stabilize that spinal segment.
With spinal arthritis, you probably also have issues with the facet joints in the same area, and disc degeneration. These combined issues can cause instability and can cause spinal nerve compression, resulting in pain that radiates out to the limbs, usually legs in the case of lumbar problems.
If you cannot have surgery, you are left with pain management. I cannot see how PT will help you...and injections may or may not have some temporary effect. Even if they provide some pain relief, it will be temporary, lasting anywhere from a few days to many months.
You ask how will your back ever get better....with a spondylolisthesis, it doesn't really ever get better. Sometimes it won't get any worse...but the only way to insure that is by having a fusion surgery. Of course all the lifting babies, etc. will not help the situation...but degenerative disc disease and arthritis are conditions that don't magically go away either. Sometimes with DDD, it becomes less painful as the patient ages, as the vertebrae can fuse together by the 6th or 7th decade.
Did your doctor have any suggestions for you other than to have surgery?
I'm very sorry you are having these painful issues. They are bad enough when you don't have kids to take care of. I can't imagine dealing with it on top of taking care of small children. I hope you're able to find some solutions and some relief from your pain soon.
Re: Just diagnosed with Pars Defect after 10 years of pain (long)
Thanks for the comments. I really appreciate it!
I think the doc figured immed. attention was needed because I am having so much trouble walking and have to care for 3 young children every day. Lifting a 19 lb. baby throughout the day, getting up and down out of the floor, etc....is very physially demanding. If my Pars Defect was not symptomatic (which it wasn't for the first 24 years of my life), I guess he would have just sent me home and told me to take some Tylenol. I have 3 other human beings depending on me for their meals, clean clothes, and so many other needs. I have to be able to walk, lift, bend, etc. And of course, I'm sure the doc wanted to prevent things from getting worse.
I see all these articles about people having spinal issues and resting or going on pain meds for relief. I cannot rest. I cannot take any pain meds that cause drowsiness. I have Vicodin left over from my c-section back in Jan. I've taken one a few evenings when the pain was really bad. The next day, I struggled to function. Those meds knock me out, and I don't have the luxury of being knocked out when caring for a family. I want to get better, if that is possible at this point, but I don't now how to do it. Pain relief would be great, even if the fracture will not heal. I just don't know how to get relief when I am continually putting stress on my back throughout the day, every single day.
Last edited by Mother2FOUR; 08-28-2011 at 09:45 PM.