This is Part 45 of a serial blog originally titled 'Martha Carter's Healing Journey'. Curious about the earlier posts? To start from the beginning, read Part 1.

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"Pain can only get so bad to the degree that it makes you pass out.”

This provocative quote comes from one of the participants at our last Fusion Support Group meeting. Some dark humour encouragement and support for all of us!

Their comment was part of a lively discussion about how scoliosis and fusion can affect the whole body, and how it often seems to cause other health issues as well. I have often thought of this in relation to my own health over the years, but have never really had anyone else to talk to about it all.

It’s well known to all of us that going back to the surgeon to ask for help with discomfort is not usually helpful, as they have already done their job. They are not specialists in related conditions, nor do they personally understand what it feels like to have a twisted body and/or a spinal fusion.

‘Hiatal Hernia’
Image from *Mayo Clinic*

As an 18-year-old—four years post-surgery—while living away at university, I started to experience terrible stomach cramps and acid reflux. I had no idea what was happening to me, but it felt awful. After every meal, I would struggle with regurgitation and wondered if it was because I was stressed and nervous in a new environment? Homesick? But then again, my roommates were ok. Maybe it was the dormitory food? I even wondered if perhaps I had a terrible illness?

The doctor at the campus medical clinic sent me to a specialist who told me that I had a hiatal hernia, meaning that the valve at the bottom of the esophagus that usually keeps the food down in the stomach after swallowing was compromised. He said that this likely developed during the long bed stay following my surgery. It makes sense that the esophagus could be severely impacted by a thoracic scoliosis curve and twist, based on the fact that the esophagus follows almost the full length of the thoracic spine (C6 to T11). I didn't really understand any of that at the time—nor did I want to—and the doctor sent me away with an over-the-counter antacid, which became my constant companion for many years to come.

Over time, I learned I had to be very careful with spicy foods and other irritants, like alcohol, but I also learned that the antacids worked well to calm my digestion when required. Of course they were just a bandaid, but since I was embarrassed to talk about it, or to request specific foods, I suffered in silence for many years. Like most young people, I did not want to stand out as different.

I now look back and realize that I was likely the only 18-year-old in my dormitory who was relying on antacids to make it through the day. It was not ideal, but what were my choices?

I was pretty attached to those antacids. And when I forgot them or ran out of my supply, I found myself having to resort to all kinds of desperate measures to calm the acidity. Ironically this often meant eating something—anything—to try to keep things ‘down’. Unfortunately, this usually only provided temporary relief. Later, while traveling in Europe, where it was harder for me to find my usual antacids, well-meaning folks gave me strong ‘digestif’ drinks — ancient herbal concoctions filled with alcohol and sugar, such as Fernet Branca or Jagermeister, which are meant to aid digestion. They usually just made me more acidic, but at least they caused me to care less as I got rather tipsy!

Over the years, I learned that the best thing (when available) was to eat fresh green vegetables such as celery, cucumbers, and lettuce as they are full of alkaline enzymes that naturally aid with digestion - without the heavy sugar and alcohol that is found in digestifs. I also learned that on really bad nights, it helped to use gravity to keep the reflux at bay by elevating my pillow or sitting up in bed to sleep. Not very comfortable, but sometimes necessary.

In my mid-30s, my husband at the time and I decided to go to a 10-day fasting clinic where they provided nutritional education, reflexology, colonics, and more… but no food, of course! It felt funny to choose to go to a place where food was not included, but off we went, because it was recommended as the ultimate detox and the best possible re-set for the whole body. After a few days of feeling hungry, my partner had so much energy that he literally started dancing in the streets. Meanwhile, I was miserable as I felt nauseous and started vomiting, and ultimately they said that my body was too acidic for fasting. To stabilize things, they had me drink some watered-down celery juice. Thankfully the enzymes in the juice helped as I had already discovered on my own. But what did they mean that I was too acidic? Did I do something wrong? They never properly explained what was happening to me and, in fact, they made me feel lesser for not being able to fast ‘properly’! That definitely did not make me feel any better.

In my mid-40s, I changed cities and my new doctor insisted I see a gastroenterologist. During our brief 10 minute meeting, he did not ask me a single thing about my lifestyle, nor surgery, nor diet. He ordered an Upper GI endoscopy where a thin, flexible tube with a camera and light was sent down my throat to examine the esophagus and stomach. He then prescribed medication telling me, “Take this for the rest of your life and you can eat and drink anything you want!”. He also casually mentioned that this medication would likely cause osteoporosis, however, he felt that it was better than getting esophageal cancer!!! What?

I left that meeting very unhappy, scared, and confused. My doctor told me to take it for a month or two to let things calm down, and to wait and see about the test. If the results were ok and my symptoms abated, she said I could stop the drugs. The test was rather uncomfortable, but gratefully the results were considered quite normal—except for the darn hernia. So I stopped the medication, and went back to my usual: ignoring it when possible and taking antacids when necessary. In my mind, that made more sense than risking osteoporosis.

Fast forward a few years and a friend recommended a miraculous ‘healer’ who was mostly a massage therapist who also worked with intuitive healing modalities. I didn't really know what any of that meant, but I was and always am willing to try something new. After a couple of sessions with her, she excitedly announced that she had "released the bile duct in my gallbladder”. She explained that it seemed stuck inside my curves and thus was not releasing enough bile (which is alkaline) to counteract the acidity of my stomach.

Was it possible that this was my problem all along? Rather than having too much acidity, perhaps I did not have enough alkalinity? That seemed logical compared to a lot of the other things that I had been told. And after that my digestion improved immensely - mind BLOWN!

Then again, in that same session, she also felt that my recent, rather difficult ‘ex’ still had a hold on me and that she needed to rid me of his ‘genital tentacles’. Hahaha, try to say that three times fast!! It’s true that I was very stressed from that breakup and my digestion was as bad as ever. So who knows? Maybe getting his tentacles out of my body was as big a contributor to my better digestion as the release of my bile duct? No matter what, I felt relieved and rejuvenated by it all.

And saying ‘genital tentacles’ three times fast makes me laugh every time.

Recently, when I was having some respiratory issues following a bout of Covid, a different doctor ordered a chest x-ray to make sure that my heart and lungs were ok. He was very surprised and seemed very concerned when he saw the hiatal hernia. He asked all kinds of questions and suggested I see a thoracic surgeon immediately for a possible corrective surgery. I explained that I have had it for many years and that mostly it was under control, so I didn’t feel a need for concern.

Nevertheless, he immediately ordered various tests including another endoscopy which is really not something to look forward to. On the other hand, it was interesting to me that he was so worried for me. In the past, it has always been treated rather casually by other doctors, so perhaps not ignoring it and having it checked again is a good idea.

Since then, I have been doing some research around hiatal hernias. One of my Yoga for Scoliosis colleagues was surprised that I did not know that this is a VERY common condition for people with thoracic curves. It had never come up in our many conversations before (another reason to not ignore things).

Just looking at anatomical drawings of the very close proximity between the spine, the esophagus, the stomach, and the diaphragm explains why this condition is so common for scoliotics, and even more so for ‘fusioneers’. Everything is very close together, and although organs are meant to be able to move around in the torso with fluidity, it’s easy to imagine how a curve, a twist, some fusion and compression may seriously compromise that flow.

I can hardly believe that it has taken me so long to really think about this; it has caused a lot of discomfort for me over the years. I often talk about my back, but I almost NEVER talk about my hernia. And that is exactly why it is important to have discussions like these in Support Group meetings (either the Fusion Support Group or the Twisty Scoliosis Support Group—or both!).

As more people join the support groups, there is more sharing of stories, issues, perspectives, philosophies, healing treatments, exercises, and helpful lifestyle changes. And in general, it is very comforting to be able to connect to an understanding and compassionate community who truly recognize the challenges from their own personal experiences of living with this confounding condition.

With this in mind, along with my new ‘coming out’ about my hernia, I decided to compile a list of fusion-associated health issues that were shared by the 10 people who attended the recent Fusion meeting. It's quite astounding to see them all written down… and I wonder how many other issues people experience?

HEALTH ISSUES (that seem strongly linked to having Scoliosis Fusion Surgery!)

PTSD from treatments - ongoing pre- and post-surgery prodding and poking as a mostly female teenager mostly done by male doctors; fusion surgery (sometimes more than one), casting, bracing, traction, Stryker frame, broken or failed rods, infection, missing school, social isolation, self-esteem issues, high anxiety, nervous system disorders, depression, suicidal thoughts.

Issues due to x-rays - increase in breast cancers and thyroid conditions due to radiation - especially in the past?

Digestive system difficulties due to antibiotics, anaesthesia, pain killers and other medications.

Hiatal hernias (bulge between esophagus and stomach that can cause acid reflux) - mostly seen in folks with thoracic curves.

Kidney pain - more persistent than usual, especially when sick - possibly due to disorganization of ribs?

Problems due to hardware - infection, broken rods, chronic tightness, stiffness, and compression in body which can easily lead to even more PTSD.

Chronic fatigue and other autoimmune issues - including psoriasis, food intolerances, IBS.

Immune responses compromised - making people more susceptible to illness and flare-ups of other chronic conditions like Lyme disease.

Other issues with vertebrae and discs - Osteoporosis, Spondylolisthesis, Adjacent Segment Degeneration, Arthritis.

Issues with other joints due to asymmetry - jaw, shoulder, neck, hip, knee, ankle and feet problems: limited and asymmetrical function; misalignment leading to pain and arthritis

Nerve issues - tingling in hands and feet, drop foot, change of blood flow in limbs, twitchy eyes or other nervous tics.

We are very interested to hear from you - what issues have you experienced post-fusion surgery? Email us here and we’ll update this blog and/or share in our monthly newsletter!

Fusion Resources:

Read the Blog from the beginning to learn about Martha’s fusion journey, starting with Part 1.

The Unexpected Impacts of Scoliosis Spinal Fusion

HEALTH ISSUES (that seem strongly linked to having Scoliosis Fusion Surgery!)

Fusion Resources:

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