I’m sorry I can’t leave you with a happier, more exciting post for the weekend. I was originally just going to write a quick “have a good weekend” with some lovely photos and be on my way. But once I got typing (blogging from iPhone since I can’t sit at my computer) I couldn’t stop. And I figured, why should I? It’s important for me to get this out.
So here you have it, the story of a girl with spatulated transverse process (also known as Bertolotti’s Syndrome).
Ridiculous name isn’t it?
The pain started when I was 10. At first people had a hard time believing such a young girl was having any back pain that was not caused by a fall or accident. I still remember girls laughing and making fun of me as I sat in my desk crying from the pain I was in. Unfortunately it still haunts me a little, and that may be why I downplay how I’m actually feeling. But let me let you in on a little secret:
Most days I can ignore it. It’s just a little ant crawling around the base of my spine reminding me to take it easy. Other days, like today, it’s a swarm of angry wasps ready to sting me repeatedly if I dare move the wrong way.
So how did I get this way?
This fate unknowingly threatened me since birth, but it took a long time to find out.
After 12 years of bouncing from doctor to physio to chiropractor to massage therapist and around again, my new family doctor had the sense to get x-rays taken which showed I had scoliosis, a curved spine. Yet he was confused. Scoliosis is common and by itself rarely causes such pain. The puzzle deepened as I never had pain travel down my leg and, as an MRI taken years later would confirm, there was no nerve damage.
I went to a back specialist and spent thousands of dollars on treatments, only to have one small incident involving my spine being stretched and a big sneeze, undo it all. Replace that little ant with the largest swarm of wasps I had encountered to date.
I swore off all medical professionals.
I continued to do my back exercises at home and go about my days feeling fine. Then one day, 5 years after the sneezing incident and 17 years after that day I sat crying in my desk, I woke up to those wasps, only this time they wouldn’t let me move an inch.
Acupuncture. A new massage therapist. A new chiropractor.
This new chiropractor got a hold of my X-rays and noticed something the back specialists did not. At the base of my spine, where those “wings” that stick out of each spine are, the one on the right side didn’t stop where it was supposed to but continued to grow downward. It is either fused with or grinding against my right pelvic bone.
And it took 17 years to figure that out.
There’s no simple treatment. I could get surgery and cut that piece of bone, but it’s rarely performed now as it’s considered quite invasive. There’s steroid shots to relieve the pain but I’d rather take preventative measures than reactive. I just have to continue with my nightly back exercises (which I’ll admit I’ve slacked on), occasionally visit the RMT and try to prevent (or be ready for) episodes like this one, where I am confined to the couch with careful movement and slow, often hunched over walking around the house.
It’s easier now that I finally know why I have this pain. I’m able to attach a description and a reason to it. I feel people take it more seriously opposed to when all I could say was “I’ve had back problems since I was 10” and just hope people would believe me.
And it’s the years of going through this and not knowing what was going on that I doubted if people believed me. I doubted myself even. I would ignore the pain and push my body and back harder then I really should have. Now that I understand, I feel like I can talk about it and explain it, and I suppose that’s why I wanted to write this post. I wanted to tell everyone that this is what I’ve dealt with for 18 years now. It’s real and it’s been the most difficult part of my life. But I can deal.
I won’t stop dancing or running, but I will be smarter about how I move. Most of all, I will listen to my body. I will take the time off to let it recover even though I’d rather be dancing or teaching. My body knows best, and I have to stop fighting against it.
Yes. I am in pain every day. And some days the pain will win. But for all those other days, I will embrace that quiet little ant who reminds me to take it easy, stay strong, and enjoy life the way I can.
Skeletal picture credit: The Journal of Joint and Bone Surgery
Hey! I’m still confused about what causes the actual pain? Is it just pressure or is it from irritation from contact? Is this something that avoiding nightshade veggies might help alleviate, much like it helps arthritis?
It’s a whole other long topic and I felt the post was long enough so I posted the link, but it’s pretty jargon heavy so here’s a jargon free explanation as best as I could deliver.
Everyone moves from that bottom disc (L5) in their spine. It’s where you bend and rotate from. But because mine is fused to or grinding against the pelvic bone (not confirmed which) I can only move until a certain point with that base disc until the disc above that (L4) takes over. For example, when you bend down to touch your toes, you are doing so from the disc right above your pelvic bone. When I do it, that last disc does not move. I can only move so far before I physically feel my spine transfer the weight to the disc above it which bends and takes on the pressure of the rest of the spine and body. Since it’s not meant to do this, it puts a lot of pressure on that area. That hum of pain I always feel is that area being mildly irritated at being overworked. When I have an episode like now it’s the muscles spasming and the discs bulging from being overworked. (Spinal disc herniation(bulge) – http://en.wikipedia.org/wiki/Spinal_disc_herniation)
Does that makes sense?
Yes! And OUCH!!!! 🙁
Tan,
I realize that this is an old post, but I’m HOPING you’ll still receive this comment. My daughter was also diagnosed with Bettolotti’s Syndrome at age 10. She is now 14 and suffers from chronic lower back pain and sciatic nerve pain down her leg. She ‘s also been given a scoliosis diagnosis that’ll we’ll learn more about at an upcoming appointment. I didn’t tealize the two conditions were related.
We tried a chiropractor and though some of the treatment felt good, her back started hurting more. That scared me so we stopped after about a month and a half. Like you, she quietly endures pain on most days from sitting on chairs or stools at school that don’t provide proper support to carrying a heavy backpack. Her friends can’t comprehend her condition and she diesn’t want to make it a big deal. My heart breaks for her knowing that there isn’t a magic fix for this condition.
What has worked best for you over the years? Do you also suffer from sciatic nerve pain down your leg sometimes?
I’m still in disbelief after finding your post…I could relate to everything that you’ve been through. My daughter isn’t the only one…no, we’re not imagining this. It’s real…
Thanks a million…I hope you receive my reply.
Alba
I can’t believe it took them so long to discover that! They’re all guilty, but especially the back specialist. Did he even look at the X-rays? My guess is he just wrote it off as scoliosis and didn’t look for anything else. Drives me nuts! I could tell you so many stories of this. It’s ridiculous! Enough ranting though, I’m glad you finally have an answer to what the cause of your pain is. Hold on to hope that they’ll discover a non-invasive surgery to correct the problem, new techniques and technological advancements are happening every day :o)
Oh I know. I’ve heard since from practitioners that this place didn’t have the best practices and weren’t very thorough. Yup.
I will remain hopeful! Thanks for the optimism boost 😀
My goodness. What a saga…I can’t imagine what that feels like to be so familiar with physical pain daily. I blog a about a family situation that’s been a constant issue in my life for the last 15 years. Emotional pain can often be ignored; physical pain, not so much. I’m constatnly having to fight the urge not to envy other people’s “care-free” lives. I love how you said to “stay strong, and enjoy life the way I can.” This is so true.
Emotional pain can be just as heavy though can’t it? In a way it’s maybe harder because it can be ignored.
I know what you mean about envying others’ lives. When I’m having a really bad day and someone is jumping, running, or especially dancing since it’s a passion of mine, I get so angry and resentful that they can do these things but don’t even realize how special it is and how lucky they are. But then I also step back and realize I don’t know every detail of their life. Everybody has something they’re working through, or have or will one day, because life isn’t flawless. It’s hard to remember sometimes but all we can do is focus on bettering our own lives when things get tough. So yes! Regardless of the form of pain, stay strong and enjoy life the way you can!
*hugs*
Tan,
I just fund out that I have Bertolotti Diesease/Syndrome (my diagnostic refers to it as a “disease”). My head is spinning. It explains so much, and so little, all at the same time. I have problems all up and down the vertebrae, but ii NEVER expected something like this. I had surgery last year (minor, outpatient) and that simple act turned into an ordeal-being diagnosed with Complex Regional Pain Syndrome, and in an attempt to address and treat that-this was discovered.
Your comment above struck home with me, as I too see people walking, running, dancing and I think to myself “Do they realize how lucky they are?” I would give anything to be able to do these things (I am walking again-just so much slower than I ever have before). It is kind of like wanting to feel sorry for oneself, but in the end-what good does that do?
Oh my I am really sorry that you have to go through such pain and to have had to live with it since you were a girl that’s so sad and horrid. I really feel bad for you so many people just take health for granted. Your a strong woman.
Hi Tan,
Thanks ever so for your note regarding the spatulated VTP… I have just arrived home from my Chiropractor…. she took a couple of x-rays today and spotted the same problem as you. Like you, I have had this since 10 years old and endured the everlasting ache for 42 years. Until recently, I haven’t used exercise, but relied on stretching my spine to relieve the pain and constant discomfort. Everyday bicycle and motorcycle riding has helped enormously. In fact,the discomfort has only recently intruded since I stopped motorcycling two years ago.
One more thing, I recently changed my mattress for an Ergoflex memory foam mattress and it is pure bliss for my back 🙂
Hope your life improves.
Best,
Neil
I sat down today to research Bertolotti’s syndrome 2 hours after my son aged 14 was diagnosed for it. I think we were lucky that within 10 minutes of the x-ray being taken the diagnosis was made by a very sharp doctor.As they say your health is as good as your doctor, if he had missed it we would be ignorant.
My son is lanky and slim and plays a lot of football and in the last 6 months has experienced back pain that forces him to stop playing within 5-10 minutes.
I don’t know what the future holds- what will be the solution, but I feel a sense of calm that we know what we are dealing with. I would be very grateful if you would email me any details you could share as we are still discovering this condition.
I too have scoliosis, and didn’t find out until I was pregnant! The extra weight I carried, combined with the crazy stretching of ligaments, caused excrutiating back pain. Child birth came with major complications because my pubic bone was also misaligned. X-rays after my daughter was born confirmed my chiropractor’s suspicions and also revealed that my spine is not just curved, but rotated too.Had major complications during Delivery. I had never heard of you condition until today! Thank you for sharing!
I have Bertolotti’s as well as degenerative disc disease (likely related to the Bertolotti’s). I have lost an inch or more in height already! No one ever knows what this is and how to deal with it. I always had back pain and everyone thought it was from having a large chest (3rd grade on) or sleeping weird, etc. I was relieved to have a chiro who did x-rays and really wanted to help me out. Things really changed during and after my two pregnancies. I have a lot more sciatic nerve pain now and the pain switches sides sometimes (usually after strenuous or abnormal activity). I will be following your story! I am 28 also and it pains me to be like this.
One more thought–are you pretty “short-waisted” by chance? I am and now wonder if it’s related to the Bertolotti’s and/or degenerative disc disease!
I was playing football about 8 years ago, and all of a sudden, couldn’t stand up straight anymore (but I could run…weird) – then couldn’t stand at all – then had to crawl for a few days, but there wasn’t any pain until the next day. Since then, I’ve had this feeling – it’s like a rubber band in my body is caught on a surface and needs to be pulled off for relief. It’s in the right lower side of the back. I wonder if this could be Bertolotti’s?
I have the same thing! Mine first gave me problems when I was pregnant with twins. Several years later I had a hysterectomy and ever since have had a lot of pain. I also have degenerative disc disease. I am 63 years old and have lived with this for more than 30 years. Good luck with your pain management. I will try to follow your story also.
Hey everyone just a heads up I will respond to any comments by e-mail 🙂
I don’t normally reach out to strangers but your page was so down to earth and inviting. I believe I have been suffering the same pain you endure on a daily bases. It started after I had my little girl in 2010 , the doctors said unfortunately a small percentage develop an unfixable problem due to the laxity in giving birth. After X-rays I learned my l5 was connected to my S1 on my right side. The doctors said that couldn’t be the source of my pain so they started in with the injections and told me I had developed si joint dysfunction. Soon I would have the nerves burnt in my si but that didn’t last long. Now they say I have developed arthritis in the joint and I am going in for more injections. Like you I wake up with a jolt of pain, that only adjust itself to my movements throughout the day. I want give up the hope that one day a doctor, probably female, will know exactly whats going on and she will deserve a Nobel prize until then we will suffer in silent. For me my suffering will be more about the moments I missed with my little girl because mommy couldn’t run around with her or play dollies on the floor. I hope it wasn’t too weird, that I shared all this, I just felt like someone finally understood because I too have that tiny fire ant in my low back just waiting to bite.
Sent from my iPad
Hello Tan, I was reading your story and thought I should reach out. I was having pain on my left side, I could feel a knot that was sore all the time. after visiting a few doctors and pain management I discovered through one of my x-rays my left transverse was riding and/or rubbing my hip. In Sept. 2013 I had a neurosurgen remove it. After 6-weeks I went back to work and no more pain!!! Good Luck!
Who was the doctor or surgeon that removed the issue for you? That would be a great resource to know about!
Hi, I have been searching for a Doctor who does the resection for over 5 years now; can you please share the Drs information. It would be greatly appreciated very happy to read you message.
Please let me know the surgeons name who performed the resection, I live with chronic pain and I am willing to travel anywhere to resolve this. Thanks in advance
Hi Nathan,
I wasn’t wondering where you got this sorted?
Is all still okay now?
Many thanks
Ria
Hi, who was the neurosurgeon that performed the resection? And where? I have been dealing with this chronic pain .
Thanks
Hi there, I feel your pain, desperation and disbelief. I also suffer from Bertolottis syndrome and the Doctors dont really know how to treat it, resection of the enlarged transverse process ir rarely done and I have searched in the states for 5 years now and cant find a Doctor who recognizes the problem, like you I have chronic pain , its mechanical pain. What has helped the is walking everyday at least half hour. I also will try to find joy within the agony, take care.
I know this is an old post, but I’m wondering what stretches you do that have helped you? I was finally diagnosed after 6 years of excruciating lower back pain with “unremarkable” MRI diagnosis’. Talk about irritating! I have bilateral spatulated traverse processes on my L5 and the reason for all of the pain are the nerves that are being suffocated (pretty much) by the abnormally small space between my L5 and S1. I had MAJOR SUCCESS with radio-frequency ablation (RFA) where they go in and fry off those nerves, but it’s considered an anesthetic and really hard to have done by anyone. It’s painful, but I was COMPLETLY without pain for almost a year and a half! Now, the pain is back, and the Dr who did my RFA was a military doctor so now that I’m out the VA tells me to stretch… like I haven’t tried that! So I’m trying to find everyone and anyone who have found success in stretching to figure out how to help myself out of this debilitating situation.
I know this was posted back in 2012 but I think that I can finally put a name with the pain! I was diagnosed with a spatulated disc back in 2014 but the chiropractor I was seeing but didn’t do any research about it since I figured it was just something I needed adjusted occasionally and would be good, no other treatment. Now from what I’ve read it seems like there’s actually a name and after giving birth 4 months ago it has flared up like never before. What are the stretches you do to relieve the pain? I am hoping to find a good chiropractor to help soon as the last one I saw was not good at all. You mentioned you still run and dance? I am a runner and so discouraged since running seems to have made it worse… how do you run through it? Thanks for any info!
I loved this post! My name isn’t Skylar, I’m 19, and I’ve sucfered from back pain since I was 13. I used to have trouble relaxing into bed when I’d sleep. By my senior year, my friends would have to help me walk off the lacrosse field after a game. And only this year did the new doctor I see notice my condition. I too suffer from bertollottis syndrome. For years my mother echoed the doctors words “core strengthen.” I felt for a long time, that my pain was due to my lack of core strength, or that I had just gone mad. This year I saw a surgeon who told me no amount of crunches would fix my condition as it is structural. I felt like no one believed my pain for so long; here was this docotor, believing me, acknowledging my pain, and taking it seriously. Luckily, there is a new minimally invasive operation in which the remove the transverse process. At this age, spinal fusion (the other surgical treatment) isn’t an option, as it limits mobility entirely; and not therapeutic steroid injections are more painful than relieving. I’m still waiting for my plan of treatment from the doctors but reading your article made my heart warm, knowing I’m not the only one. You are not alone sister! I hope you’re healing:)
Hi Skylar,
Good to read that you too finally have a name to put on your long-suffering pain too. I hope you can find a treatment that helps! I’m interested to learn more about the minimally invasive operation that you’ve mentioned, prefer minimally invasive and conservative treatments for now. Would you be able to tell me a bit more about it? My pain is bearable although it’s limiting my activities, I assume it will get worse. So If there’s a good way to help or treat it without major surgery then I’d like to know more!
I’m not sure where you all live, but there is a neurosurgeon at Cleveland Clinic in Ohio researching this syndrome and has performed minimally invasive surgery for the right candidates and had a lot of success. Look up Dr. Steinmetz. There is also someone in NY- Dr. Jenkins. If you are on Facebook at all, please look for the Bertolotti’s Syndrome (usa) page and there is wealth of information!
A great post to which I can totally relate to as well. Being able to finally put a name to the pain and condition allows you to be able to move forward with plans to treat or maintain it properly. Knowing a name also allows those suffering to be able to come together in a forum to talk about it with others.
I too have only recently been diagnosed with Bertollottis syndrome (after 12 or so years of only being treated for scoliosis with various doctors, chiropractors, and physiotherapists). Adjustments do help and probably good to have it to maintain spinal health and mobility. But now that I know the exact cause I can be more mindful and be in control of my own movements and exercises, and not just blindly hope the adjustments will cure it one day.
It seems like there are many people on here who also had to wait a long time to have their symptoms taken seriously or to have further examinations performed, which could have lead to the diagnosis sooner. Different spinal practitioners have varying degrees of awareness to look for sacralisation I suppose. It was an Osteopath who noticed the slightly more-white shading connecting the left side of my L5 to my pelvic bone on my x-rays (which were also sighted by other practitioners but not picked up on). He also happened to have had another patient a few weeks earlier with the same condition which contributed to him looking for it with me after I described to him what I was experiencing.
So the lesson from my personal experience here is that it could pay to seek professional opinions from different practitioners and have tests and exams done early on, for any persistent condition or problem, not just Bertollottis. The current problem could only be a symptom of another undiscovered cause.
I’m also a keen runner and hiker when I’m not in pain, but I recently figured out that too much of it aggravates it more and outweighs the benefit of helping to keep your core and muscles strong. I used to run 8-10km alright but now even 2-3km aggravates it. But, seem to be less aggravated when I run outside as opposed to on a treadmill.
Currently wanting to see if certain types of running shoes can help. Considering factors like how my feet lands and pronates, as well as different types of soles (air, gel) or different flexibility (thin soles more flex than thick soles), could help. If anyone has any information I would love to hear from you. I’ll post if I find something that helps.
I have Bertolotti’s as well. Otherwise a healthy 30 year old..You mentioned you do nightly exercises for it. What nightly exercises do you do? I’d like to strengthen and stretch the area before going for more invasive measures.
Ohhhh honestly I can’t remember. I wrote this post 7 years ago and don’t do the exercises anymore. eek! I’ve gotten to the post where monthly chiro keeps things stable (except for the last couple weeks….) I know they nearly all had to do with strengthening the core though. Hope that helps!
I have just had x Ray results for Transverse Process L5 and googling it brings me to Bertolotti syndrome I’m waiting to see the orthopaedic team. I had a car accident the end of March and since the pain has been awful, I’m not able to do hardly anything at the moment, i have horses and normally ride etc and can’t due to the pain even just walking the pain is quite something. My xrays from 20 years ago show nothing I wonder if this is a Bertolotti diagnosis or from the car crash any advice whilst waiting for my appointment would be so helpful
Many thanks
I’m so sorry to hear about your accident and difficulties. Wishing you a speedy recovery!
Interesting nothing showed up 2 years ago. As far as I know, Bertolotti’s syndrome is congenital so it should have showed up in your x-ray. However, since you weren’t exhibiting signs, it’s possible they missed it? Do you still have access to the x-ray’s? It may be worth asking a doctor to look again.
I turn 60 this week and didn’t know until only 18 years ago, (at42yesrs old!) That I had a spatulated TP. Have been in pain since I was 12. Was Never told what to do about it. Never told it was going to become a Real problem. Never told the condition even had a name!. Now, all these years later I am living in misery. Because of the continued change in gate ( walking/running pattern) I will need a new hip asap. I’m not around anymore, I have trouble gardening, six months ago I had to stop bike riding and suddenly a few weeks ago I’m even having trouble walking. If only some Dr. had stepped up and told me what was happening I could have taken steps Then to have addressed this. Thank you for your post. I don’t feel so alone.
First off, apologies for the horribly late reply. And I’m so sorry to hear your condition went undiagnosed for so long! It’s so infuriating when you know something is wrong but there isn’t an answer. I hope you’re able to find a bit of comfort now that you know.
Hi, i have bertolottis syndrome, i was diagnosed with it at the age of 20 after suffering since i was 18. I had an x ray and an MRI and i have been told that the bulge is all the way across the bottom of my lumbar so u get pain in my back and down both of my legs. I use heat and codine for the pain except now i am pregnant i am unable to use painkillers. I was given exercises to do for the rest of my life to strengthen my core however sometimes im in so much pain i can’t do the exercises. I was told by specialists that surgery will not be an option unless i lose control of my bowel and bladder and even then i don’t know if i would risk the surgery.
Hi Sarah, thank you for sharing your story, and I’m so sorry to hear the pain is so intense. Have you found anything that works for you? Physio, chiro, yoga?
I have bertolottis and only found out ofter my 5th chiro finally took xrays of my back and I saw the spot and immediately went OH THANK GOD, I FINALLY know why I have pain in that exact spot. He then proceeded to tell me that that wasn’t the reason for my pain and I needed to continue to see him, and he was doing treatments all the other chiros and PT’s had done with me to no relief. I relate to almost every post here. I have tried everything, PT, Chiro, weight loss, core strengthening, yoga, accupuncture, massage you name it. I was miserable not knowing why I had this pain that had no rhyme or reason. I googled spatulated transverse process and bertolottis syndrome came up and everything I read about that pain was SPOT ON. It is a relief to at least know why I was having this untreatable pain. Until last year I was trying to just live with the pain and try not to aggravate it. I hated being thirty and thinking I would never run again without pain for three days after, I couldn’t sit during car rides too long or walk to long. I was tired of crying some nights because of this pain. I saw a physiatrist who gave me injections, first an epidural injection, then when that didn’t work, we did steroid injections around the transverse process. Still no success, so he has referred me to a surgeon that is willing to go ahead with resectioning. I am scared, I feel lie I’m at the end of my rope and I’ve tried so many things, but it’s also back surgery in my thirties. My other worry is there are so few doctors that even know what bertolottis is let alone have treated a patient with it. I don’t want to go through with surgery and still have the pain afterwards. I have another appointment this wednesday to discuss my concerns, but I wanted to post in solidarity with everyone and say, I feel your pain, or at least something like it. I hope you all find relief.
Thank you Jen. There is definitely some comfort in knowing you’re not the only one isn’t there? Wishing you strength and courage (and amazing results!) as you go through the surgery process!
Hi Jenn,
My experience s the past 17 years ounds like yours only I’m 40 now. Did you have the surgery? I’m to the point of wanting it done, if I can find the right person to perform it. I’d love to follow up on any success you’ve had.
I’m emotional after reading this. The feelings and fears and motions you went through were almost identifiable to mine. I’ve had back pain since I was a young girl and was told it was my posture over and over. As an adult I went to a chiropractor who X-rayed my spine and finally pointed out the abnormality. Knowing I might feel this way forever was hard to accept (even surgery can’t fix it sometimes) but finding out an answer and knowing it wasn’t in my head or because I wasn’t trying to sit up straight hard enough was such a relief. Such validation. I’m a recovering alcoholic so I’m avoiding the pain med route. I’ve found yoga helps some. I also found out heat makes my pain worse while cold helps get through fits. Have you found anything else that helps? Some days it’s hard to breathe it hurts so much.
Thank you so much for writing this and sharing your experience. It means so much to me.
It’s wild how often ailments get dismissed as something the patient is doing wrong. I’m so glad you found a chiropractor who uncovered the mystery for you!
Yoga is great. Honestly the most important thing for me in addition to yoga/massage/chiro is listening to my body. As soon as I get an inkling that my back is hurting, I stop what I’m doing and rest. It took me nearly twenty years to come to terms with the fact that I can’t just push through the pain!
Thank you so much for writing this blog post. There are so many of us Bertolotti’s Warriors out there.
I suffer every day, coming to terms with the fact that I need to find my body’s own way to deal with the pain. It’s so hard.
Thank you for bringing more awareness to this untreatable condition. Hopefully one day we can all be educated more about it.
Tan I would love to speak to you. I have the spatulated transverse process also and low back pain my whole life. I am having so many other issues and would love to talk to someone with this to see if it’s all related. I have been to Dr after Dr and still no diagnosis but maybe my other issues of muscle and joint pain come from this? I also have uneven leg length not sure if that ties into this too.