Rolfing Sessions 3, 4, & 5

My last three sessions focused on what is called the "center line."  This is the imaginary line from the skull to the ground.  I have come to think of it as a plumb line; if I drop a weight on a string from my head this line would be where my spine should be.  It is side to side and front to back.

Much of the work has been through deep muscle triggering/massage and at times becomes a bit painful.  Luckily, she backs off when I signal, usually through body signals before I think to say something! 

After my third session I found I no longer have to fight to stand up straighter.  This is a wonderful experience, allowing me to see the world from higher up and look in front of me as I walk, instead of at my feet so I won't trip and fall and inward to remind myself to continue pulling up, wagging tail, etc.

My fourth and fifth sessions continued from this, with focus more on the legs and hips, but continuing in the spinal areas.  It has been 3 days since my last session and I am still a bit sore, but in new ways (mostly where the pressure became too much and my EDS bruising tendencies kicked in).

I love how my body is changing!  I feel stronger, have more energy, am standing taller, and have not fallen in months.  I also have not experienced a full hip or shoulder dislocation since starting.  Subluxations still occur, but seem less severe.  I have not had this much success  from anything else I have tried, and am, yet again, looking forward to my next rolfing session.

Second Rolfing Session - Walking

Yesterday's big event was my second Rolfing session, and I am still loving it!

This appointment's focus was on how I walk. 

We started by evaluating how well my newly lifted shoes level my hips.  Not only are my hips more level than when I walked in for my first appointment, but she told me I am moving more normally than 3 weeks ago.  Then we moved to my feet.

Looks like, in this situation, EDS is a benefit.  The joints between the carpals, the small bones in the foot, are very flexible.  She was able to easily get them moving, which was a little scary at first since I have slipped some of these joints before.  We worked with what it feels like to move the foot properly as if walking, then she moved on to my legs and hips.

One of my legs likes to turn out.  Through deep tissue massage she turned it in and helped me to feel how it should face forward.  This also involved the hips and teaching my coccyx, or tail, that it is separate from the hips.

Then, I got up and walked.

It is strange that I now understand what I've been told for years about, "walk on the outside of your foot."  It involves a lot of rolling of the foot, bending of the knees, movement in the hips.  And, I didn't fall!

As I've aged I've become more scared of falling.  In my defense, falling has resulted in much bruising, subluxations, and dislocations.  It hurts a lot!  The body's natural reaction is to defend against this, but it does it by limiting or eliminating natural movement.  This, in turn, causes more instability and can actually cause more falls.  A vicious cycle. 

I would not have believed anyone if I was told that to minimize pain I had to learn to walk again.

Alternatives to Surgery

My last update was about the immediate need for surgery. 

Hasn't happened.

I consulted with an adult scoliosis expert at the same hospital as my EDS specialist.  His conclusions:  I'm too scary to operate on.  I would be in more physical pain with more physical limitations after surgery.  I am flexible enough that there would be a near total curve reduction (as evidenced by a push-pull x-ray series), but the odds are for a lower quality of life. 

My orthopedic specialist thinks the surgeon is too comfortable in his tenured teaching position and wants another opinion.  Me?  If one of the best of the best says, "Eek!" I want to try non-conventional alternatives first.  I won the argument.

At this time I am working with a new orthotic/prosthetic specialist who reevaluated my short leg and changed my shoe situation.  I am spending the next two months, the warmest and my least painful, walking in and adapting to the changes before we determine if this is best.  After a few hours in my new sneakers I already decided I like it if for no other reason than I am  very stable.

I also am seeing a physical therapist who specializes in a technique called Rolfing.  So far I like the results and have even gained about 2 inches of height!  Granted, I shrank almost an inch between the first and second session, but I have experienced minimal back pain (though my back muscles are very tired at the end of the day even if I skip my exercises!).

So, I'm heading into the summer with no surgical scars, new physical therapy technique, new shoe lifts, and a positive attitude.  Let's see where this road takes me!

Orthopediatic Outlook - Stormy Skies Ahead

I am still processing the results of my latest orthopedic appointment emotionally but mentally know what has to happen. The little kid inside me, however, swings back and forth between, "this needs to happen," and, "NO!" I'm about to send my emotional self to her room to finish out the tantrum.

The latest appointment was to go over the findings of a series of x-rays. There is a little osteoarthritis setting into my shoulder; not surprised. My short leg is 14mm shorter than my long leg; hasn't changed. My spine has become unstable. WHAT?!? Yes, unstable. After over 2 decades of stability it is collapsing. Gravity is no longer my friend. I am an adult staring into the abyss of corrective spinal surgery. I hated hearing the words Harrington Rods spoken aloud after so many years of believing I escaped their cold surgical steel clutches.

But. mentally, I knew this was coming. I could feel it in the increasing pain and unidentified anxiety. The strange "you are too young for this" diagnosis of bursitis just 3 weeks ago that prompted me to demand a new spinal evaluation. The knowledge that gravity works and it was only a matter of time before the curves increased. The nurse who laughingly refused to remeasure my height last year when it was 1/2 inch shorter than I knew it should be. I knew. But I refused to accept.

Now, I have no choice. My curvatures are each over 60 degrees. This is no longer a case of avoiding surgery but needing to embrace it before my spine kills me. Some of my internal organs are in danger of being damaged. There is a potential I will break a rib on my hip bone - good thing I have strong bones! Straightening my spine will also eliminate pain, correct problems with my hips and shoulder, and on the petty side I'll be MUCH taller (at least 3 inches) and no longer be 5 pounds overweight for my height. Hey, I have to find a ray of sunshine in this somewhere :)

Pain Management Program

This spring, at my specialist's recommendation, I enrolled in a pain management program through my local hospital's wellness center. My requirements were that it would be non-invasive and limited pharmaceuticals - I admit I was very surprised to find that at a traditional hospital!

The program was supposed to start with an informational meeting, but due to time constraints and because I want to keep working and not threaten my employment status with frequent absenteeism I started with an orthopedic evaluation and physical therapy. The evaluation found bursitis in one hip which was causing a new onset of pain and weakness and, when my shoulder was moved the way he wanted, limited mobility in my previously "worked on" shoulder. Of course, if allowed to move the shoulder "my" way it has hypermobility. PT has focused on these two and not, as I wanted, all-over body strengthening to help manage the constant discomfort.

I still haven't had the informational meeting with the head of the program, but found out last week that was due to a hiking disaster she experienced and the program is slowly changing hands. Thus, I am fighting for my needs with the feeling of little support other than my family.

I pushed and was sent to a second orthopedist who is re-evaluating my short leg and scoliosis. If these have changed at all (which is likely, it has been about a decade since last evaluated but at that point both had been stable for about 15 years) then they could be the cause of the bursitis, limited shoulder mobility, and possibly other areas of pain. Won't know more about this until early September.

My goal with all of this is to reduce the amount of daily pain and numerous subluxations/dislocations I experience. I want to be able to keep on top of it and not be constantly surprised by new problems. I love my career, but know EDS is slowly making it difficult to work everyday and be effective at what I do. My hope was for the pain management program to help me organize it all and figure out who and what would help the best, but so far it is, yet again, me figuring it all out with almost no knowledgeable help from the medical community. This is extremely frustrating and I sometimes want to just give up, but I am still too stuburn to admit I am disabled.

Summer is My Favorite Season

I always look forward to summer. The flowers are blooming, trees fully leaved, and the days nice and warm. Perhaps it is the warmth I look forward to the most.

Heat helps my joints feel better. The lack of shivering also gives my muscles a chance to heal from the damage of winter. I can exercise more because I feel better, which, in turn, makes me feel even better.

I haven't had a major joint episode since my elbow last year, though my left shoulder gave me a scare about a month ago. Luckily, since it is getting warmer, I can exercise the joint more and strengthen it before I have a full dislocation.

I'm looking forward to my next visit with my EDS specialist. I have several new oddities that I want to discus with him to find out if they are EDS related. One is an occasional extreme headache, not a migraine but seriously painful, that is occurring about once every 2 months. The other is a bizarre hive-like rash that will occasionally appear and disappear a few hours later. I am wondering if my skin allergies are related to EDS (since my skin is very much a result of EDS) and if there is anything I can do besides live in a hypoallergenic bubble :)

Now, to go enjoy exercising in the warming weather and get these joints of mine ready for next winter!

Elbow Dislocation

Ouch!

I've dislocated ankles, wrists and even a hip before. My mom even referred to one shoulder as "permanently dislocated." But this is the first time it has ever hurt THIS much!!

Looks like what happened is I weakened the elbow doing yard work, such is the nature of spring. Then I made the mistake of reaching for something on the table and was hit with an amazing wave of pain! I iced it, rested it, checked it out and knew it had dislocated and managed to reset it a day later, but the pain wouldn't go away.

After another day I called my Dr, and he sent me to an orthopedist. The ortho found that I had reset the elbow but managed to seriously pull the muscles and tendons around it until the elbow was so weak it keeps slipping - hence the continual pain.

He wrapped it and had me measured for yet another brace. This time it is a compression brace, from the same company that makes the shoulder brace I have had wonderful luck with. I'll wear the brace (once it arrives) for several weeks so the elbow can start healing, then begin yet another set of strengthening exercises. At least it wasn't too serious (I was afraid I was finally facing surgery and pins - pushed that one off a while longer :-) )