Comparing Surgical Outcomes

Surgical Success, or Failure? By Beth Cooper

This was written as a response to a commonly asked question in the support groups online. I couldn’t have explained it better, so I received permission to post it here on my blog.

I’ve been asked to post a comment I made to one of our most asked questions where members are looking for others with similar symptoms or cyst locations in hopes of being able to predict possible outcomes. This particular post asked if others felt their surgery was a success or failure. In my almost six years here, most of it as an admin, and as a member in ten others worldwide, this answer remains the same for everyone, everywhere, in every aspect. 🦋

There are people on both sides of that question. One critical thing that everyone needs to remember when trying to “compare” is that there are dozens upon dozens of variables to each persons story. 

Those variables such as age, overall health, comorbid diseases or conditions, how long is/was it between onset of symptoms and surgery, were symptoms pre surgery manageable or chronic and debilitating, how many cysts were treated and were they open or closed neck, are there cysts in other levels of the spine, what is everyday life like - do they work - what kind of job and responsibilities, is there a good support system in place before and after surgery for as long as it is needed, young moms have babies or toddlers while others may care for children with special needs or parents, or teens who are usually not as willing to help to the extent needed, is home single story or have lots of stairs, do they have insurance, what are hobbies or interests outside of the home - truly, every single aspect of each of our lives affects our journey. 

Some have had complications and new, debilitating complications from traditional tests and treatments used by uneducated doctors worldwide causing conditions that can affect surgical outcomes. 

A 50 yr old, physically fit  man who moved to surgery fairly quickly with a specialist, surgery went well, the man was doing great and adhering to post op protocols as they applied to him, then he got over confident and impatient, went mountain biking and had new cysts form along the same, weakened nerve line as the treated cysts. 

A woman who practically “trained” for her surgery - another case where treatment was within a year to 18 months, followed strict diet, supplements, exercise routine, had super successful surgery, went back to work, lifted a patient and caused new cysts to form - as in the case of the man. Both would have said their surgery was successful - I’m not sure what they would say today. 

Ours is a disease affecting connective tissue. Some have other diseases and conditions that make theirs weaker, so are more susceptible to more cysts forming and-or becoming symptomatic. Then others return to life and never have more form. 

Many here have been symptomatic for a very long time - as in 5 to 20+ years and have incontinence, are bed bound, or have many limitations as far as abilities - who will say through post op pain that they’re glad they had the surgery to stop progression, and that perception will change at 6, 12, 24, 36 months.

Even some who have permanent nerve damage and will always have some level of pain say they are glad they had the surgery before they lost more abilities and function. 

A ton has to do with full knowledge of the disease, the delicate surgery, and that recovery can take many months to years.  Pain can come and go, even in new places not felt before as nerves regenerate and heal. There are members who have noticed changes happening as far out as 6 years. Those are usually something they used to do daily but had stopped doing then realized they were doing it without thinking twice. 

Many are the primary source of income for their families, others have no support system or help - we have members who have been disowned by family and friends - we become that here for them, some have physically strenuous hobbies such as weightlifting, skiing, ATV riding, running marathons or triathlons. We have a former Olympian and a College basketball coach.  Even teenagers and young adults. 

Our primary objectives are knowledge and support. We want people to share the good and the bad. Each one of us is totally unique in every way that affects surgical outcomes and perceptions of them. 

Nerves take a very long time to heal. Unlike joint replacement or surgery on muscles, tendons, cartilage, gall bladder, hysterectomy, etc - there is no definitive evidence that can help to predict outcomes.  We can roughly gauge it from experiences reported, but again, those variables can change over time, affecting healing. 

Absolutely keep reading and asking questions. We must make decisions based on as much knowledge as we can gather, how each single one relates to us and our individual life/needs with realistic expectations.”🦋