Chronic Pain - Pectus excavatum with rib flare

Posted by vogonpoet @vogonpoet, Dec 17, 2023

My name is Fiona Cartwright, and I am a 40-year old female. I'm 5'1" and weigh 104 lbs.

I am just looking for some advice as to how to proceed with my issue.

I have suspected Pectus Excavatum (images attached as follows) with quite pronounced rib flare.

I have never had much problem with it cosmetically, and am not overly bothered by the look, but it's the chronic pain that bothers me, that has got significantly worse over the past year. I wake up several times a night short of breath and in pain, the pain is mostly located in the middle of my upper back, and around my entire rib cage, and my sternum. Lately I've been waking with heart palpitations and shortness of breath.

I've been to chiropractors, massage therapists, osteopaths and physiotherapists. I've been given stretches that definitely help with my hip/leg/foot pain (pinched nerve L2-L4). But he told me I have Pectus Excavatum, and that's what's causing my mid back pain and rib flare. I stretch and exercise as much as I can daily, and do all the exercises given to me by physio every day.

I also have mild thoracic and lumbar scoliosis, and hypermobility.

I've spent a long time doing abdominal exercises (as per doctor recommendation) for diastasis recti, which after five children has been sorted by the exercise. Nothing has helped with the rib flare though, and I've been trying everything for the last 11 years. I first noticed it when I was about 14 or 15 (five years prior to having children) but it wasn't much more than weird ribs and flipping ribs that could move abnormally. I understand that we have floating ribs, but the rib that moves up over my other ribs is not a floating rib.

I can't breathe when I'm relaxed, or lying on my back. It takes several pillows to prop myself upon so I can breathe whilst in bed. I'm taking 100mg SR Tramadol twice daily, but this only takes the edge off of the pain. I don't want to take any more than this, because I'm also on a low dose SSRI (20mg Paroxetine daily).

Has anyone got any suggestions as to what kind of specialists I need a referral to, so I can get my GP to refer me for further examination? I was referred to orthopedics but this really isn't their department. I've had a spinal MRI, which only showed my mild scoliosis, but from the research I've done I need a chest CT and/or MRI. I have had some advice telling me that I need to be referred to Cardiothoracic or Thoracic specialists.

Any advice as to how I should proceed would be very helpful and I would be extremely grateful. I have had discussions around PE and my rib flare many times, and she is rather dismissive that this could be my main issue.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

sue417 | @sue417 | Dec 18, 2023

Hi
It sounds like you have quite a complicated issue. It should. I would definitely push to see the cardio Thoracic Specialist. Have you been to a spine clinic? When my thoracic spine fractured, my T went to a spine clinic and had laser treatments for 8 months and it made a huge difference in my pain. And healing. There must be someone who can help you. I wish you luck in your journey.

florentina99 | @florentina99 | Dec 18, 2023

This seems a very complex issue, but I think cardiothoracic dept should be able to help since you are suffering worsening problems?
Can you not have surgery for the pectus evcavatum ,if this was corrected your symptoms might improve?
Wishing you all the best.

Sue, Volunteer Mentor | @sueinmn | Dec 18, 2023

@vogonpoet Welcome to Mayo Connect, a community of patients and caregivers who support one another in life's health journeys.
Here is information about treating Pectus Excavatum in adults.
https://www.youtube.com/watch?v=jucwvngQvI8
It is usually treated in younger people before cartilage is fully hardened, so it requires the insertion of hardware to hold the chest wall in the correct position. Have you considered consulting a Thoracic Surgeon at one of the Mayo Clinics?
http://mayocl.in/1mtmR63
Sue

pb50 | @pb50 | Dec 18, 2023

Hi. I’m not sure where you are being treated today but I learned recently that you can apply to be seen by Mayo for a second opinion. They have some regional facilities on places - I know of ones in Jacksonville FL and Phoenix AZ. I’m not sure if there are others. But I think your idea of a thoraco/cardiac consult is a good one.

Apologies - just noticed a mentor has responded regarding second opinion!

Justin McClanahan, Moderator | @JustinMcClanahan | Dec 18, 2023

Hello @vogonpoet. I'd like to add my welcome to the other members' and share that should you want to see a second opinion with Mayo Clinic, you can do so here, http://mayocl.in/1mtmR63. Mayo Clinic does have experts in treating this condition, such as, https://www.mayoclinic.org/biographies/jaroszewski-dawn-e-m-d/bio-20054813. I'd also like to invite @jdyment to this discussion as they talked about pectus excavatum on Mayo Clinic Connect in the past as well.

@vogonpoet, Is your current provider open to referring you to a specialist and helping you get connected with one?

annewoodmayo | @annewoodmayo | Dec 19, 2023

If you think that your current doctor/s is not paying enough attention to your problem-- not sending you to the correct specialist, for example-- then be sure to tell them about your difficulty breathing and your heart palpatations. While the pain may be most prominent symptom to you, the breathing and heart may get the doctors' attention more than telling them about pain symptoms will.
I think the breathing and heart will make them take immediate action, which you deserve.
I am not a medical person, just another patient with a different health problem than yours.
Best wishes to you!

lasirvent | @lasirvent | Dec 19, 2023

Because you have scoliosis, hyper mobility and pain in the rib area, I’m going to suggest you look into Mesenteric Artery Ligament Syndrome, Pots and slipping rib. I searched for years and what seemed like a million tests which only made this worse. There’s a group on Facebook called Mals Awareness which is very helpful and knowledgeable. I’m so sorry you’re going through this.

dmk | @dmk | Dec 19, 2023

I have on different occasions sent test results, pictures etc to specialists online and always received feedback from them you might research specialist and send them your pertinent info