Life As A Bobble Head – Neurosurgery and The Hypermobile Patient

Life as a bobble head – neurosurgery and the hypermobile patient

“Surgery should be considered as a last resort. Most patients with EDS will not need neurosurgery.” – Dr. Henderson

I spoke to my PT about this today.  I stated that I wish we could do a study on hypermobile patients (patients with hypermobility syndrome/Ehlers-Danlos Syndromes) who do an intensive, proper PT program, one that has foundations in natural movement principles and biomechanics of the body, versus those who have surgery without an intensive PT program first.  First, let me say that I do not believe that anyone opts for surgery if they do not feel it is necessary.  However, I do look at myself as an example.  FullSizeRender-24I had all proper testing done and was found to have CCI (Craniocervical Instability), that I needed a shunt to drain the excess cerebrospinal fluid (I have too much in my head) and possibly needed a discectomy.  Oh and I have more than a bazillion signs and symptoms of tethered chord, so that surgery too.  Chiari was discussed and suspected, but it was not visible on the MRI.  I opted not to have surgery (any of them) and to manage my issues and symptoms as best as I could, through proper exercise, diet and stress control.  I could have chosen to have surgery – multiple to be exact, because testing showed that it was warranted and my neurosurgeon felt that surgery could ease a lot of my long-term symptoms.  Do I still have issues and symptoms? Yes and some are worse than before, but I can function.  I also knew that my body would not do well recovering from such serious surgery, and have three young children at home, I was not willing to risk anything unless my life depended on it.  While surgery might have relieved some symptoms, I shudder to think of what issues I could have ended up with.  What’s interesting is how my husband and both interpreted my appointments.  He thought I was headed for surgery for sure, based on test results and what the surgeon said and I said, “oh hell no!”  And that was four years ago.  IMG_0392
People like me are the ones who I wonder about. The ones who have issues, but can function, even if impaired.  Having surgery is not an emergency and it is not a life threatening situation for someone in a situation similar to mine.  There are those who are in life threatening situations.  I get that.  Still, I cannot help but notice how many people go in for a surgery that is not necessarily an emergency or life threatening and end up having several surgeries.  It also seems that the more surgeries a person has, the harder recovery is. FullSizeRender-28
What would happen if instead of surgery (again, non emergency or life threatening situations), people did consistent and proper PT, focused on nutritional deficiencies and worked to decrease other issues that are exacerbating neurological symptoms? FullSizeRender-22
What if a PT program is designed properly to not only help strengthen the entire body, but it specifically focuses on neck and spine stability for those with hypermobility, much like the one I’m doing at present?  A program like the one I am doing and talk about often when I work with patients or speak during seminars, teaches people to move properly and move more throughout the day – how much difference would that make in the lives of so many people?  Even in the video (link below) posted by EDS Today on their FB page, Dr.Henderson states that “a great deal can be done by managing mast cell activation syndrome, fibromyalgia-like pain and really good physical therapy.”
FullSizeRender-2Unfortunately, the more we learn about EDS, the more we find out that the very things we were told not to do years ago (i.e. gentle yoga and other forms of regular exercise), as well as  the things that have become routine for hypermobile patients (i.e. various types of surgeries) to correct or stabilize our bodies, are in fact a few of the things that contribute to the downward spiral.  That does not mean that there are not necessary surgeries and also ones that have clinical findings to support doing them — there are.  There are also life threatening situations where surgery is necessary, in fact it is imperative for the patient to survive.  The question is, when a pathological issue is found with a hypermobile patient, what is the best thing to do especially if the situation is not an emergency?  Each patient together with his/her physician, has to weigh the pros and cons of surgery.  You have to consider the quite possible and detrimental risks to quality of life, versus present symptoms and the very real possibility that surgery in general can bring up more issues than it will solve.  FullSizeRender-1Many patients will have to have more surgeries and the trauma to the body is enormous, as is the deconditiong that it can cause.  It is well-known now that orthopedic surgery and TMJ surgery are not regularly recommended for hypermobile patients, and it seems that neurosurgery is going the same way.  I believe 2015-2016 will be a very interesting and informative time for our community, to say the least.
When you are dealing with a condition that has no cure, most of us have to accept living with varying levels of chronic pain for the rest of our lives.  We also have to deal with the fact that we are now realizing that some of the information that we have been told, medications that we have taken and the treatments that we’ve had done, are the very things that have proven to propel the downward spiral.  What a humbling thought.
However, what I do not understand is why so many patients seem more scared of going to PT, or of trying to be slightly more active, than of having a major surgical procedure, especially when there is no guarantee that surgery will help relieve their most troublesome symptoms.
Despite what is recommended, wouldn’t the risk of what could go wrong be far greater with a major surgery, than with trying a different physical therapist?  Maybe try calling a few and asking if they work with hypermobile patients.  If they say yes, ask to speak with him/her directly and give them a quick quiz.  That’s what I did… on the first time I decided to go see a PT.  Or, what about the overall risk of trying to move a bit more each day?  I bring this up, because deconditioning has been proven to be one of the largest contributors to the downward spiral (or, The EDS Spiral as I call it).  Deconditioning usually stems from the fear of movement, fear of pain from movement and muscle atrophy that happens as a result.
FullSizeRender-26As a patient, I’ve had to make decisions to accept that the risk of what could go wrong with surgery, is far too great than what symptoms it could improve.  Too often, the things that go wrong or get worse, are the ones that are not on our radar possibilities.  Why?  Because connective tissue is everywhere and we, you and me, are the complicated, rare, “that’s not what usually happens” patients.
I’ve had to accept that I will live with chronic, often debilitating pain, chronic headaches (of various types) and chronic fatigue at the very least, for the rest of my life. But … I can function. IMG_0410IMG_0395
I’ve had to accept that even though I am blessed to see some of the best EDS specialists, many times even they do not have all of the answers or another option for me to try.  And it’s not their fault.
I’ve had to accept that I will have to work harder and more often than others to keep my body strong.  I made peace with that a long time ago and do what I can to keep motivated.  Moving around as much as possible during the day and remaining active even when I really do not feel like it, are all nonnegotiables for me (see my “just 5 minutes” rule).  What if I’m too tired or in too much pain?  I have learned to cope through certain exercises or activities for whatever I am feeling.  No, it’s not 100%, but it keeps me from laying in my bed all day long. IMG_0399
I’ve had to accept that the very medications that help with one thing, often cause more issues for others.  So, that means I take very little medications. My pity party is over and I learned to cope other ways fairly successfully.
I’ve had to accept that surgery is not an easy “fix” for things when you are hypermobile.  More often than not, having surgery is far from an easy fix  — i.e. having something simple removed at the dermatologist.  Let’s just say, thank God I sell surgical glue for a living.
I’ve had to accept that this is life with EDS.  Life with Ehlers-Danlos Syndrome means that my body is built a bit off-kilter from the norm and that there are things that will help, but a ton that can make life as I know it more difficult — even if five million other people state otherwise.  I’m not like 5 million other people, so why keep trying to force my body to act like it? FullSizeRender-25
I’ve had to accept that the more I mess with my body, either through poor lifestyle choices or “too much” healthcare interventions (i.e. non-emergency surgeries, medications, etc.), the more off-kilter my body will become.  If I push it too off-kilter, I will go to the land of no return and I have no plans of going there – or through my own choices propelling me there.
I’ve had to accept the fact that it is what it is and that is humbling.
I’ve decided to focus on what I can do versus what I can’t.
I’ve decided that in order to live with and survive with EDS, my life has to be surrounded by things that help me, not hurt me.  My health is my full-time job and it should be for everyone, not only if you have EDS.  I do not solely go to PT and expect that to be enough for my body.  I workout every day at home, on my own, including shelping my weights and workout videos too on vacations or when traveling.  And I’ve done that for years.  PT usually has a beginning and an end.  There’s no beginning and end when you have EDS, you are in PT for life and that can get very expensive.  It’s best just to figure out how to do it on your own and at home safely.  Check-in regularly with your PT for tune-ups, new issues and to see how you are progressing.
I’ve decided to live and keep living, as if everyone in the world has the same issues, faces the same obstacles and is hypermobile like me – doesn’t it seem like everyone has some form of hypermobility anyway? 🙂
Below are a ton of resources on physical therapy and EDS, as well as links to several presentations and webinars on spine, neck, head and jaw issues and EDS.  Specifically, a new book on physical therapy for EDS just was released.  I have not read it, but I’ve heard good things.  Personally, I speak on natural movement principles and restorative exercise, both of which have similar principles to pilates.  Isobel Knight is a medical writer, who has been writing about hypermobility for years.  Her books are great also.  However, I encourage everyone to read as much as possible and listen to the webinars.  While there are may approaches that someone can follow, there is not one answer for everyone.  We all have to find what works best for our own personal cases of Ehlers-Danlos Syndrome.

“Happiness is a choice. Suffering is an option.” – HT

Dr. Henderson’s presentation at the ILC Foundation Meeting – Video reposted from EDS Today‘s FB page.
Additional Resources:
– Alignment Matters by Katy Bowman
– Move Your DNA by Katy Bowman
Our Stories of Strength – Living with Ehlers-Danlos Syndrome – anthology of stories from those living with EDS and who have found ways to persevere
– Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS – new book on physical therapy for Ehlers-Danlos Syndrome just released
 The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief
Thera Cane Self Massager 
Body Back Buddy Self Massager
Trigger Point Performance Total Body Self-Myofascial Release and Deep Tissue Massage Kit
Pilates by Lisa – Online pilates matt and barre videos for varying fitness levels
A Guide to Living with Ehlers-Danlos Syndrome: Bending not Breaking by Isobel Knight
– A Multi-Disciplinary Approach to Managing Ehlers-danlos (Type Iii) – Hypermobility Syndrome: Working With the Chronic Complex Patient by Isobel Knight
Hypermobility, Fibromyalgia and Chronic Pain  by Dr. Hakim
Dental Issues & EDS (including TMJ)
– EDS UK’s One Day Conference – Dr Fraser Henderson: The neuropathology of lax ligaments – the spine, neck and head in EDS
– EDS UK’s One Day Conference – Dr. Mitakides: The Jaw & Headaches in EDS 
EDS Awareness webinar – Dr. Mitakides: Musculoskeletal Headaches and EDS
EDS Awareness recording: Chiari Conference
– EDNF’s 2014 Physician’s Conference – Dr. Henderson: Neurosurgical management of hereditary connective tissue disorders
EDNF’s 2014 Learning Conference Presentations (including Dr. Mitakides on TMJ & Dr. Henderson on Neurological Issues with EDS)
TCAPP 2013 Dr. Henderson Presentation on Neurological issues and EDS
Update on the best ways to manage Ehlers-Danlos Syndrome Hypermobility Type 
Please read disclaimer here.  The intention of this post is not to state that those who have had surgery, should not have done so.  Similarly, I am not stating that those who are going to have surgery should not. I’m solely stating my personal decision thus far in my journey, what has worked for me and providing commentary on what EDS research is showing.  Everyone is responsible for their own health and well-being. Any decisions should be made through consultation with your healthcare provider. 

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