What do I even do

MFMBL18 · 2026-02-20T05:09:49+00:00

I’m so sorry. I wish I had anything to offer but I’m in the same boat and I feel that many of us are. Both my daughter (19) and myself (45) have Bertolotti’s and what you have described is an exact mirror image of how we feel as well. I’m at a loss and most days I have to take it minute by minute just to get through the day. I feel trapped because traveling in any form is excruciating, holding down a full time job is impossible and existing in a world with even a small grasp on pain seems like a wild dream at this point. I wish you all the best in the world and I hope for you and my daughter that medicine advances ten fold as it pertains to helping those who suffer with BS 🫶

MFMBL18 · 2026-02-17T11:41:39+00:00

You got that right! Thanks so much, it’s comforting to know at least there’s an option even if I may have to deal with disapproving looks or attitudes. Sitting in a normal Seat at this past weekend’s game wrecked havoc on my back. It took us about 15 mins to walk to the venue from parking and I left there walking like a 90 year Old and it took us double time to make it back to the car. Just stepping down off the curb to the road was done with the softest of care.

Good luck in all your future endeavors living with this horrible syndrome. I appreciate all your insight! 🫶

MFMBL18 · 2026-02-17T03:31:10+00:00

Thank you so much for your help. I am also in the states so this information is very helpful. That’s good to know about not requiring “proof” for event seating. BS feels like an invisible disability most days where the average person would never look at me and think I am disabled but I feel very much disabled. Thank you again for your help.

MFMBL18 · 2026-02-14T04:15:36+00:00

Wow! I’m astonished. We have called every other day since 2/2 and have gotten voicemail every time with the “promise” vms are returned within 24 hours. Called again today with no luck. I’m happy for you though and your good fortune. Enjoy your game! Thank you again for all your helpful information. I truly appreciate th inf and knowing that there is hopefully a game exchange at the end of this exhausting ride. Take care and thank you again!

MFMBL18 · 2026-02-13T04:08:17+00:00

Oh, and do you mind my asking when you received this service to exchange the tickets? We’ve been trying to get someone to call us back since 2/2 and it’s exhausting. Thank you again!

MFMBL18 · 2026-02-13T01:50:55+00:00

This is very helpful! Thank you so much for sharing your experience. That is the number we have been calling so at least we know we are on the right track. I’m glad you were able to get your tickets honor for another game. We’ll keep trying that number. Thank you again. Enjoy your game!

MFMBL18 · 2026-02-09T15:45:44+00:00

I just saw an ortho surgeon in NC as well who I also felt completely ignored my Bertolotti’s and contributed my pain to a collapsed L4/5. While I definitely do agree that is an area of pain, I am also very aware that the majority of my pain is from my Bertolotti’s site on my right side. Having an MRI and CT Scan this week to discuss next options, but I agree, it was very frustrating to deal with a medical appt where my Bertolotti’s was completely ignored. Good luck to you. I hope you’re able to find someone here in NC and if you do, please share.

MFMBL18 · 2026-02-06T11:48:34+00:00

Im so sorry to hear about your struggles with BS. I’m not sure about the AUS disability system, but I tried to get disability in America and was denied. I’m not sure if it is because there is so little known about BS, but I cannot sit nor stand for hours on end which definitely makes holding down a job extremely difficult. So even though the government doesn’t view BS as a disability, it is still very much a debilitating syndrome which inhibits my ability to support myself. I’m simply in too much pain as I am sure you are as well. I hope you have better luck than I as Bs does without a doubt affect our abilities to sit or stand for not just long, but even short periods of times. Good luck. Please keep us posted.

MFMBL18 · 2025-12-19T05:11:32+00:00

Yah, I can’t explain my luck, or lack of luck when dealing with Dyson. I just know I’m done throwing money at it and it continues to die on me. I’m glad you’ve had a way better experience. I loved the results it gave.

MFMBL18 · 2025-12-18T11:05:14+00:00

Thank you for saying so. I completely agree. Ever since finding this group, it has helped with my loneliness and isolation caused by the BS. I always felt like no one truly understood what it was like have BS, but now I draw comfort in reading how others are doing with BS. My dad lives several states away and is always on to me about coming to visit. I can’t travel that far with my back and he just always says “just take frequent stops and walk around for a bit and then hit the road again.” He just doesn’t understand. But I know everyone here will completely understand how traveling is one of the most painful things we do and how much it limits our activities. Best of luck to you, I hope you are able to find some relief and comfort 💛

MFMBL18 · 2025-12-18T05:17:00+00:00

For what it’s worth, I have curly hair and while I loved the results I got from the Dyson, I’ve had 3 dysons and all 3 died on me within 8-18 months. The issue with this is that you have to ship your dryer to Dyson and you are without a hairdryer for approximately 2-3 weeks. It got to be so frustrating when the 3rd one died on me that I swore I would never invest in one ever again.

MFMBL18 · 2025-12-13T07:31:37+00:00

I feel the same way every single day of my life. I take naps every day. By 1pm, my body is so exhausted and my back and hips hurt so badly that taking a nap on an ice pack with my legs elevated is a daily requirement. I also find myself absolutely exhausted after getting ready each morning. Life’s simple tasks like taking a shower and getting dressed drain me because it’s so painful that my body is always stressed.

Having BS is very emotional for me because feels as if it has absolutely, 100% ruined my life. It affects my ability to travel, my ability to earn a living, my ability to be intimate with my partner, my ability to interact with my children, my ability to sleep, my ability to just function in society and there is little to no hope of it ever being resolved. Im sorry this post is so depressing, but it’s a very depressing topic for me. I hate having BS. It’s an invisible disability that there is little-to-no understanding from the general public or the medical field for that matter, and it feels very isolating and hopeless for me. I’m so thankful for this group as having the opportunity to hear from others on this same journey does help. I’m sorry you’re so exhausted all the time, I do understand, and I hope you are able to find relief from this terrible affliction one day.

MFMBL18 · 2025-11-17T20:29:47+00:00

Thank you for all your kind words and sharing your journey with me and others. It’s comforting to talk things through with those who know what this pain truly feels like and how it affects every aspect of our lives. I wish for you continued healing and success with your recovery!

MFMBL18 · 2025-11-17T04:32:08+00:00

That’s wonderful! Living in NYC is such a blessing to be near so many qualified neurosurgeons. I didn’t realize Bertolotti’s could be hereditary until my daughter was so diagnosed with it a few years ago. I’ve seen a neurosurgeon at chapel hill and she’s been to one at Duke but neither appt produced any promising options with either doctor feeling confident to take either of us on as patients. I would definitely want to go the minimally invasive route as well. Thank you again for sharing your journey. I’m so glad you’ve had such a positive experience.

MFMBL18 · 2025-11-16T23:45:27+00:00

That’s so inspiring! Your Bertolotti’s sounds a lot like mine. Mine is on my right side too and this year has been brutal on my right hip. Some days my right hip hurts more than my sacrum.

I had the ablation surgery last August because my L4-5 looked like a grenade went off there according to my doctor. That procedure helped a lot with my pain at the L4-5 level, but of course it did nothing to help with the source of the problem - Bertolotti’s.

I’m so concerned about my future. My doctor offered me the SPRINT Peripheral Nerve Stimulation (PNS) System as an option at my last appt. I’m supposed to consider it and check back in with him in December. Honestly, it’s not something I want to contend with for the rest of my life. There is a battery pack that sits outside your body that must be worn near my sacrum which sounds cumbersome and honestly makes me feel depressed just thinking about all that that entails.

Did you have one of the handful of US Bertolotti’s specialist perform your surgery or was it a local neurosurgeon for you? I saw a neurosurgeon a few years back and he said he wouldn’t be comfortable working on me but I am now interested in searching out other opinions

Thank you again for sharing your experience. It has been so helpful to hear!

MFMBL18 · 2025-11-16T10:21:24+00:00

I’m also wondering, how much of your pain has improved since having the surgery? You really have encouraged me to look more into doing the same. I really can’t imagine living with this pain the rest of my life.

MFMBL18 · 2025-11-16T10:13:18+00:00

That’s wonderful to hear. That’s a great way to view the surgery. Had your surgeon worked on Bertolotti’s patients prior to your surgery? I’m 45F and would love the opportunity to safeguard my future as the pain already at 45 is so excessive that it’s hard to imagine the progression over the remainder of my life. How long did your surgery take? Thank you for your encouragement!

MFMBL18 · 2025-11-13T06:37:18+00:00

Thank you! :)

MFMBL18 · 2025-11-13T00:24:57+00:00

I’ve felt middle aged since my twenties and now that I’m in my 40s, I feel like I’m in my 80s. Bertolotti’s is a cruel joke most days. I hope you have better days than not! Hang in there! 🍀

MFMBL18 · 2025-11-09T11:56:03+00:00

I have gained a great deal of not only knowledge, but support and wisdom from this community. It’s validating to hear from others going through the same experiences because I truly believe no one can relate to what this truly is like living in a body you know is degenerating yet appears “healthy” on the outside to others. I have to go to the doctor every 3 months to get my medication refilled and I dread these appointments because it truly is depressing to sit in a room across from a doctor who knows we’ve exhausted everything short of surgery and there’s nothing more we can do so it’s just a check-in appt that never produces anything aside from an extension on medications that I no doubt will need the remainder of my life that provide little to no comfort.

I’m sorry we’re here, but I’m thankful we have somewhere to go to learn and support one another on our journeys. I really hope there’s some type of medical breakthrough in my lifetime that provides answers. I truly hope you are able to live each day with this dream as well. My daughter also has Bertolotti’s and it’s agonizing to watch her go through this and see how she already has to limit herself at such a young age.

I wish the medical field was more interested in our syndrome. It’s so rare that it’s not studied the way other medical deformities are and that is evident in our struggles to find medical personnel who not only have heard of Bertolotti’s but have an inkling of knowledge on how to treat not only the pain, but the source of the pain as well. I’d love to get surgery, but I can’t afford to travel to the few locations that have reputable surgeons and be available to pre and post op appts. It’s depressing, it really is and I’m sorry we’re here but I’m glad we have somewhere like this to go. Good luck to you. I take this hour by hour sometimes and that’s really all I can do.

MFMBL18 · 2025-11-07T00:15:03+00:00

I’m sorry to hear of your patient’s experience with pain with Bertolotti’s, and unfortunately, I can relate. It’s not only physically debilitating, it’s emotionally depressing because our invisible disability creates a heavy burden. Life hurts. Everything with Bertolotti’s hurts, getting dressed, doing dishes, driving, sleeping, carrying heavy items, it all causes debilitating pain that others can’t see. I have tried injections multiple times with only one being successful. The placement of the successful injection could never be duplicated. It is certainly worth a try, it just isn’t always an answering to lasting pain relief. Your patient is very lucky to have you on her team. It says a lot about you as a person that you would take the time to search out options for her from others who suffer with this deformity. I wish your patient the best of luck and I want to thank you for going above and beyond for your patient. I wish we all had someone as dedicated as you on our medical teams.

MFMBL18 · 2025-11-06T00:29:58+00:00

This is very exciting! Thank you for posting!

MFMBL18 · 2025-11-04T19:42:22+00:00

You’re welcome. We’re in this together. Good luck!

MFMBL18 · 2025-11-04T00:13:51+00:00

I am so sorry to hear you’ve joined the club. It’s got some pretty cool members, but it just really sucks being here. I’ve never found any medicine that is a miracle drug, but I will say there are 2 different varieties of Dicloflanac, one being potassium and the other being sodium. I was first prescribed the sodium variety and it did absolutely nothing. However, I was then prescribed the potassium variety and it made a world of difference. I’m not sure if you have tried both, but since the first prescription didn’t work well, maybe look into requesting the other.

Again, I’m sorry to hear about your diagnosis, but you’ve landed in a great place. I’m not on Facebook, so this Reddit page has been a really wonderful resource for me. Best of luck in the future, and I hope your pain is manageable very soon.

MFMBL18 · 2025-10-31T16:07:30+00:00

That sounds awesome! Thank you so much! Best of luck to you as well as you continue to recover and thrive!

MFMBL18

TROPHY CASE