What the 'Neck' is Going on?

Cherry Blossom: Impermanence. The beauty and transience of life. 

--from The Language of Flowers by Vanessa Diffenbaugh--

Cherry Blossoms

Our cherry blossom tree has always been my favorite tree, and I've grown increasingly attached to it throughout my illness. As I was listening to The Language of Flowers, I learned the meaning of a cherry blossom. Perhaps there is a reason I've been so drawn to this tree all of these years? For some reason the meaning of the cherry blossom felt perfect in the midst of our search for a new answers and new diagnosis, while I also work to focus on and create beauty in my life.

As promised, here is a continuation of the medical journey as of late from the post Out of Dissonance Comes Discovery.

First I want to comment on the outpouring of support and comments I received in regards to that post. Wow! I'm continuously amazed by your generosity of time and love. I will also try to answer some of the questions that arose. I agree with all of you that I have AMAZING doctors on my team, and have now for many years. Having Dr. ANS as my 'point guard' for the past eight years has been an invaluable, incredible and humbling blessing.

Our beloved weeping cherry tree.

I'd like to take a step back in time before going directly to the most recent testing. Since I first saw Dr. ANS in 2004, he has been incredibly tuned in to the neck issues. Over the years we've done brain  MRIs as well as MRIs of my cervical, thoracic, and lumbar spine. We have enough data from these to see that no obvious anatomical abnormalities exist. We also can identify that no significant changes have occurred over the years. Dr. ANS works with many patients whose ANS issues are caused by either cervical stenosis or something called Chiari malformation. He works closely with a surgeon on these cases and my MRIs have been reviewed by that surgeon in the past. He found nothing of note. Originally, when we first looked at my MRIs in 2004 Dr. ANS suspected that my spinal column was slightly narrow, but further investigation revealed this not to be the case. Dr. ANS is one of the pioneers in connecting cervical stenosis and Chiari malformation to POTS.

Blooming.

Over the years we really expected to find evidence of cervical stenosis, given my incredibly strong family history of this. As you all know by now, my mom has severe spinal stenosis in both her cervical and lumbar spine, both of which she has had surgery for. My mother's only sibling, my uncle, has also had surgery for cervical and lumbar stenosis in the same vertebrae as Mom. Lastly, my grandmother had surgeries in the same locations. Even though my symptom presentation differs from that of my family, we truly thought we would find something. Guess what? My MRIs look PERFECT in this department. We would expect by my age I would start to show some evidence of stenosis, since my mom and uncle both noticed symptoms, such as sciatic pain at young ages. 

Love this tree!

When my MRIs all came back negative for stenosis and Chiari malformation, Dr. ANS started searching for alternative answers to the neck issues as well as the ANS dysfunction. Because I had been unresponsive to all of his 'tricks' to improve my health--medications, PT, etc. we pursued the possibility of an infectious base for my problems, such as Lyme disease and its associated co-infections. As you all know, I've been on the Lyme journey now since November of 2005. After 7 years of treatment for Lyme disease (under the care of two different Lyme doctors), and very little if any progress, we decided to step back and see what else might be going on. To be honest, I've never felt sure about the Lyme diagnosis--but because it is a disease that is so nebulous, manifesting itself differently in each person and having no reliable testing--it is hard to feel sure about it. It is important to note here that over the 14 years I have been sick, I have been tested for hundreds of other conditions before we made the decision to treat me for Lyme disease. This testing and search for alternative answers did not stop during the Lyme treatment.

We've had to come at the neck pain using medications for symptom management to decrease the pain, but not solve the problem. I've had significant improvements from using Lyrica, Lidoderm patches, the LDN, Klonopin, etc. In another post, I will explain more about what this neck pain has felt like over the years. We had hoped that treating me for a systemic infection and inflammation would have significantly reduced the neck pain and gotten to the root cause of it. I do think the antibiotics may have helped some, but I also think a lot of the improvement I have had is due in large part to the medications aimed at symptom management.

Canopy of Blooms.

What I do know is that over the years, I increasingly found myself 'not fitting in' with anyone else on the forums for Dysautonomia/ANS Dysfunction or Lyme Disease. I couldn't find a single person like me. Dr. ANS and Dr. Complex have both told me that they do not have another patient like me and have never had someone present the symptom profile the way that I do. This is unbelievable considering that Dr. Complex has been practicing medicine for 50 years now with and deals with incredibly challenging cases and that Dr. ANS has seen thousands of patients with CFS, FMS and ANS dysfunction.  This is what has made solving my case so incredibly challenging to them. We are really having to dig deep for more and more unusual causes of my symptoms. 

At our appointment in February, Dr. ANS told us a story about a young boy who was very sick, but no other doctors were taking him seriously. Certain that something was not right, Dr. ANS kept looking for possible causes of this patient's unusual presentation of symptoms. He finally placed him in a seated MRI with flexion and extension where he found that the small bone at the base of the skull was pressing on the base of the boy's brain stem when he was in extension and he had very little space at all even when his head was positioned normally. Dr. ANS is remarkable in many ways, including his ability to remember each of his very unique clinical experiences and apply them to other patients. He will often say to me: I have one patient who has had success with such and such. And we'll give it a shot. Every detail of his treatment is individualized. 

What I know is that from the time I first became sick in 1998 I kept saying: something is wrong with my neck. How can something not be wrong with my neck? I feel a bit as if we have come full circle in re-focusing our energies on my neck.

To be continued...:)

Blessings,

Emily