How To Do Your Own Medical Research: A Cautionary Tale

The law of the instrument, otherwise known as Maslow’s Hammer, whereby he states that I suppose it is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail. Likewise, if the only tool you have is a scalpel, I also suppose it is tempting to treat everyone as a surgical candidate. A few years ago, I had a procedure recommended to me, and when I asked the doctor to justify why I should receive it, he stated, “anyone in my profession would recommended it.” In other words, “because I said so!” I did my own research and had the procedure.

But recently, A surgeon took one look at my MRI and concluded I needed surgery right away. He never bothered to ask my thoughts on the matter. I am now involved in a process cultivating me for the knife. In the meanwhile, I have been doing my homework. I am not surprised that the procedures they recommend have similar outcomes to non-surgical approaches. This post is designed to teach you how to do your own research, how to receive REAL informed consent (not the rushed one they offer a foot from the operating table), and decide for yourself what is best for YOU.

How to Find the Information You Need

Suppose you take away nothing else from this post. In that case, you should at least know that The National Center for Biotechnology Information, or NCBI, contains an extensive library of medical and scientific papers, including PubMed. So, if you need information from google on a subject, type NCBI before your query. For instance, type NCBI asthma, and you will get to the scientific literature on asthma directly. So now you know my little secret. NCBI helps me find most of my information to write my posts.

Additionally, most diseases have dedicated websites. Beware that the first few search results will be ads. It is best to avoid them because they are likely selling you something. For instance, when I type in "osteoporosis," the first displayed site is named "treatmyosteoporosis.com." Below the URL, it says, Osteoporosis Treatment-Official Website." But when you follow the link, it takes you to the website for the medication called Prolia.

Listed below the paid-for sites are better ones, but beware they are all mainstream sites like WebMD. I usually read one or more of them to get a good idea of the basics. After that, I type in NCBI followed by the most popular treatment mentioned.

For instance, on the Mayo Clinic site for osteoporosis, the first treatment listed is for Bisphosphonates, which are medications meant to strengthen bones. So, typing in NCBI bisphosphonates, I get ten solid scientific papers on the topic with zero ads. From there, I am off and running.

Scientific papers are usually daunting. Don't worry; it gets easier to read them with practice. Additionally, the first few paragraphs summarize the data to get their opinions early in your research.

Finally, there are many trustworthy websites out there produced for mass consumption of unadulterated knowledge. Hopefully, you may consider mine one of them.

Informed Consent

The state determines the required standard for informed consent. The three acceptable legal approaches to adequate informed consent are (1) Subjective standard: What would this patient need to know and understand to make an informed decision? (2) Reasonable patient standard: What would the average patient need to know to be an informed participant in the decision? (3) Reasonable physician standard: What would a typical physician say about this procedure?

Many states use the "reasonable patient standard" because it focuses on what a typical patient would need to know to understand the decision at hand. However, it is the sole obligation of the provider to determine which approach is appropriate for a given situation. 1 

I have concluded that informed consent is a fuzzy thing at best. How much information is enough? I don't think there is a good answer. I can only speak for myself; I want tons of information. 

So, a surgeon recently informed me that I need spinal surgery. The conversation was brief. It went something like this: "If you don't have it, things will continue to deteriorate, so best not to wait. You will be sore after the operation, but you should do well in the end." The true informed consent will be a huge document I must sign minutes before the surgery stating they could paralyze or kill me. This technique is the norm and seems like a little too much, a little too late to comprehend. True informed consent should take place weeks or months ahead. 

My Situation

On March 22nd of last year, I posted about the pain I experienced in my shoulder that went away after three days and has not returned. The symptoms in my shoulder coincided with stomach bloating, which in retrospect was more than likely exacerbating the shoulder symptoms. I will talk more about this later. 

However, I did continue to have vague numbness between my deltoid (shoulder) muscle and neck, so I had it checked out at an orthopedic practice. The staff took an x-ray of my neck (cervical spine) and the doctor said it looked arthritic. He then recommended physical therapy. The facility was near my office, so I went a few times per week at lunch for about four months. 

The treatments were pleasant and were mostly massage, traction, electrical stimulation, and chiropractic adjustments. I returned to the orthopedic surgeon and reported that I felt fine, but I still felt slightly numb, but it was so slight it was hard to tell if I really was or not. 

They took an MRI and told me that I needed disc replacement or spinal fusion surgery! My image can be seen below. The spinal cord should appear straight. I have marked off the worst area. I should add that I underwent an extensive functional medicine work-up to assess my overall health; more on this later. 

My Diagnosis

The doctor told me I had degenerative disc disease bulging into my spinal cord, causing it to become pinched and inflamed. The medical term for this condition is stenosis, which means narrowing a tube or opening. Normally, our vertebrae are separated by soft discs that sometimes can compress and bulge into the spinal cord, which one of mine had. This condition is also called a herniated disc. 

Some nerves exit between the vertebrae that can become compressed because the spaces between the vertebrae shrink as the disc is compressed, causing neurological deficits, such as numbness, altered reflexes, or weakness, which may radiate anywhere from the neck into the shoulder, arm, hand, or fingers. pins-and-needles tingling and/or pain, which can range from achy to shock-like or burning, may also radiate down into the arm and/or hand. The technical name for this kind of pinched nerve is called radiculopathy. In addition, the vertebrae had grown bony protrusions that can limit movement and indicate arthritis; this condition is called spondylosis. Around the same time, my functional medicine doctor determined that my stomach symptoms stemmed from a common infection by a germ called H. Pylori.

The Gold Standard of Treatment

When an intervertebral disc is badly damaged, it can be removed, and the vertebrae fused with bone or metal after being separated back into place. This surgery is called spinal fusion. The result is that the bulge from the bad disc is removed, curing the spinal stenosis, and the distance between the vertebrae is increased, reducing the radiculopathy. Alternatively, the disc can be replaced with metal, allowing movement to continue. The name of this surgery is disc replacement, and it is becoming more popular. Surgery for cervical radiculopathy from a herniated disc should only be considered in those cases when 6 to 12 months of non-surgical treatment fails to relieve neurological deficits in the arm, such as pain, numbness, and/or weakness. 2

Meet The Surgeon

My orthopedic doctor does not do spinal surgery, so he referred me to his partner, who happened to be involved in the clinical trials for disc replacement approval in America. When I met with the spinal surgeon, he said I would need a CAT scan to ensure my vertebral bones did not have too much arthritis for the disc replacement; otherwise, he would have to do a fusion. However, he did not ask whether I wanted the surgery. I have done the CAT scan but the follow-up with the surgeon is pending. It is clear form his statements that he wants to do surgery.

 My H. Pylori Treatment

H. Pylori irritates the stomach and can lead to ulcers and cancer. I wanted to treat it correctly, so I also had an endoscopy and colonoscopy to confirm the diagnosis. The treatment takes some time, but I am now cured. It was a combination of antibiotics and stomach acid-lowering medication. My health and feeling of well-being are much improved.

The CRP test is a general test for overall inflammation. My CRP reading was low at the time of my H. Pylori diagnosis, but not for me, indicating that I had increased systemic inflammation. This reading alone can explain why the shoulder pain happened when it did.

The Truth About Spinal Surgery

Sadly, there have been no studies comparing spinal fusion to a placebo procedure. Most research to date compares one fusion technique to another technique or a form of non-surgical treatment, so we still don't know whether spinal fusion is effective against placebo, which is considered the gold standard in medicine. 3

Three years ago, this landmark study compared spinal fusion and non-operative treatment in patients with chronic low back pain: an average 11-year follow-up study found that patients with chronic low back pain and disc degeneration that elected to have spinal fusion surgery did no better than those who elected non-surgical care. 4

Studies show that spine surgery is rarely as effective as patients believe. For example, the Ohio Bureau of Worker's Compensation study showed that of 1,450 patients suffering from disc degeneration, disc herniation, and/or nerve disease, almost 50% underwent spinal fusion surgery while the rest did not. Two years later, only 26% of patients who underwent surgery recovered enough to go back to work. However, 67% of patients who did not undergo surgery could return to work. 

In addition, a study published in the New England Journal of Medicine showed that adding a fusion to lumbar spine surgery for spinal stenosis did not result in better outcomes at two years and five years. In this randomized controlled trial of almost 300 patients, the authors compared outcomes for a group of patients with spinal stenosis who underwent spinal surgery with no fusion against another group of patients who underwent spinal fusion. The authors found no benefits from fusion for spinal stenosis.

Interestingly, this study also found a large failure rate in both groups, with 20-25% of patients undergoing a second surgery within five years. Sadly, an editorial in the same issue of the journal concluded that the addition of fusion to surgery in treating lumbar spinal stenosis does not create any additional value and might be considered an unnecessary treatment. That is a big deal, an editorial opinion from the most influential medical journal in the world calling spinal fusion for lumbar spinal stenosis an unnecessary treatment. 5

The Aging Spine

In cervical spine radiographs from 200 asymptomatic subjects aged 60–65 years, Gore et al. found degenerative changes at one or more intervertebral levels in 95 % of the males and 70 % of the females. They also found that degenerative changes in cervical intervertebral discs were more frequent in older populations. 6 Boden et al. consider that abnormal MRI findings in asymptomatic subjects are false-positive results since it is difficult to distinguish between aging discs and pathologically degenerated discs, which cause symptoms. Therefore, it is important to know the frequency of degenerative changes on MRI in an asymptomatic population. Finding disc degeneration on MRI examinations depends more on age-related biochemical change than structural deterioration. Such changes may not have pathological consequences, particularly in older adults.

My Own Informed Consent

Here is the information I used to make my decision:

  1. Aging spines look bad over 90% of the time for males.

  2. Surgery is no better than non-surgical approaches.

  3. H. Pylori was not helping my situation.

  4. I had no pain or loss of strength.

  5. Surgery is risky.

  6. Surgery should not be considered until a concerted effort of 6 to 12 months of non-surgical treatments has been made. 7 It has not been one year yet.

  7. The New England Journal of Medicine thinks spinal fusion might be unnecessary.

At this time, judging from the information I read in the medical literature, I won't be having surgery any time soon. The next section details what I did instead.

Rolfing Structural Integration to the Rescue

https://www.rolf.org/rolfing.php

When I started physical therapy last February, I also started sessions for structural integration, a form of bodywork that reorganizes the connective tissues, called fascia, that permeate the entire body. Ida Rolf pioneered the system; hence, many call it Rolfing. Rolfing Structural Integration works on this web-like complex of connective tissues to release, realign and balance the whole body, thus potentially resolving discomfort, reducing compensations, and alleviating pain. In addition, Rolfing aims to restore flexibility, revitalize your energy and leave you feeling more comfortable in your body. Essentially, the Rolfing process enables the body to regain the natural integrity of its form, thus enhancing postural efficiency and freedom of movement. Rolfing Structural Integration can alter a person's posture and structure dramatically. Rolfing can potentially resolve discomfort, release tension and alleviate pain. One study showed that Rolfing significantly reduces the spinal curvature of subjects with lordosis (swayback); it also showed that Rolfing enhances neurological functioning. 

The structural integration sessions uncovered some problems with my abdominal region that, once addressed, allowed my posture to correct. This cure changed my neck posture. We also discovered that my uppermost vertebra (the atlas) was locked, causing the other vertebrae in my neck to overcompensate. Once it began moving, the other vertebrae in my neck were relieved of their extra duty. Time will tell if these corrections keep me away from pain and surgery.

The Bottom Line

95% of males 60 to 65 have spines that appear to be degenerating on MRI examination. Usually, spinal pain improves with time as the natural aging process leads the disc space to have less motion. Because with continued degeneration, bony growth around the disc will capture the excess motion. Therefore, continuing non-surgical treatments is always an option.

Unlike many other types of surgery, with spinal fusion surgery, only the patient can decide if the pain and inability to complete one's normal daily activities are bad enough to warrant spinal fusion or any other type of surgery. The best way for a patient to make an informed decision about whether or not to have spinal fusion is to fully understand the trade-offs between spinal fusion and other non-surgical and surgical treatment options. 8 Unfortunately, many surgeons make the surgery they are recommending sound like a miracle when it may offer no benefits in the long run. So, it is behooving of us to gather vital information to make the correct decision. Hopefully, you have learned a little about how to do the research. Lastly, Make sure you are practicing a healthy lifestyle; it is your best defense against chronic disease.