r/BertolottiSyndrome

Hey guys, I (19F) just got diagnosed with Bertilottis syndrome and after a few months finally have an appointment with an orthopedic surgeon for a consult this week. I was wondering if anyone had any experience or advice on the best ways to discuss this with the doctors so that I won't be dismissed as being overdramatic or anxious, which has happened before. Any advice to hopefully help me be taken seriously?

hola! al parecer hay todo un club debido a esta condición haha yo me uno a ustedes a mis 32 años sobrevivi al cancer de cervix así que descubrir esto un año después de mis quimios y cirugía fue bastante complicado de asimilar.

hace 5 meses empecé con el dolor más fuerte de cadera que no se iba, decidí ir a fisioterapia me pidieron una radiografía y cuando iba a realzármela me operaron de emergencia para quitarme la vesícula.

mi dolor se detuvo algunas semanas pero volvió con más fuerza y me realicé mi radiografía mi doctor me recetó algunos aines para el dolor pero la realidad es que ya pasó mi tratamiento y aún me duele. mi dolor es incapacitante afortunadamente soy ama de casa y puedo estar en casa

lo malo es que el dolor en las noches es horrible no me deja dormir. ahorita son las 1:42 am y estoy escribiendo esto con dolor.

tengo fisio hasta dentro de 4 días :( para ver ahora si mi dolor como BertoloTti.

mi pregunta es, como sobreviven a los episodios de dolor? tienen medicamentos controlados? solo tomo ketoprofeno y paracetamol deseando que no me salga una úlcera porque ya sería el colmo de aquí a que vea a mi fisio y espero me recete algo porque es insoportable:( si alguien tiene algún medicamento que pueda decirme les agradezco

Hello I(M17) have been suffering from bertolotti for a while now and since I live in pakistan here having a medical issue is a huge taboo. Especially one most ppl dont get. To start from the start around 4 months ago I start getting excessive pain in my left leg during my finals(what a freaking bad time that was) and for a month or so my parents brushed it off as just a muscle issue or something. So I just got some visits to the er (3 times to be exact). And I got painkiller injections and muscle relaxants. The painkillers helped but when they wore off god I was in so much pain I felt like I was going to pass out. Anyhow I passed my exams and begged my parents to take me to get checked. At first they told me I needed to "walk it off" so I tried that to even though it hurt.

This was my father so I tried so hard to just listen thinking he might know what the problem was.

Then I had enough and basically begged them to take me and so they did. I saw an orthopaedic guy (idk what they are called) and he diagnosed me with sciatica. And so I got physio therapy for that for another month or so.

The pain however still concurred and atp I felt so depressed.

I was always on painkillers that made my head feel fuzzy and I had such bad brain fog and pain.

What made it worse was my physiotherapist believed I had another issue, Ankylosing Spondylitis. And referred me to a pain management expert. She made me get several blood reports and an mri.

Throughout this time my parents kept telling me how much they were spending on me and asking me why I wasn't "fixed" like I was doing ts on purpose.

Any how I got the mri report and showed it to the doctor and she said I didn't have Ankylosing Spondylitis rather I had bertolottis.

The mri report said: (skip if you don't wanna read)

"-No definite sclerosis, erosion or significant joint space reduction of bilateral sacroiliac joints seen.

No definite bone marrow edema seen in the region of bilateral sacroiliac joints to suggest active sacroilitis.

There is evidence of transitional vertebra at lumbosacral junction with prominent left transverse process of L5 making a pseudojoint with the left sacral ala consistent with Bertolotti's syndrome.

The additional sagittal lumbar spine films STIR sequences show disc desiccation and diffuse posterior disc bulge at the level L4-5, predominantly causing left sided nerve roots compression. -Please correlate clinically."

So yeah everybody was like he has this now. My parents still were convinced it's my fault. They blamed my posture, how I sat and how much I sat as the cause for abnormal bone growth!? I still donr understand.

I carried on physio for another month hopeful that now I'd be pain-free and I'd be able to sit in a car without pain atleast. But nothing changed. My pain kept coming back.

So my father took me to his friend who is an orthopedic surgeon and then began telling him the entire story and it felt so damn obvious my father was making it seem like I'm at fault for the pain or something like that and I was so furious but i bottled it up.

I could barely stand and stress just seemed to make the pain worse. I then told the doctor what was actually happening and showed him the entire report and mri and everything. And what he said made me more mad he began telling me how is very common and that it'll go away and then he told me to go on a 15 day bed rest and ill be all good by the end of it. He gave me multivitamins and calcium and vitamin d and painkillers and nerve relaxants. And my father used this to say "see you are alright you are just letting the reports get ti you and the pain is imaginary" and I was aboutta have a panic attack because I've been in pain every day for 4 months. I cant sleep becusse the pain comes back. I cant exercise or do anything and it's my fault!?!?.

It's been 10 days I've been taking all my medication and I've been on my bed for 10 days barely even going to the bathroom. And the pain is still here man ahhhhhh.

Is my father right?

Am I imagining the pain now?

Do I really have Bertolottis?

How do I tell my parents that it's not my fault?

Is this with all parents or just mine?

Thank you for reading this rant. I just am kinda lost and I thought talking to ppl in this community would help.

Your responses would be appreciated.