Seriously though, I just watched the movie version of RENT, and that message, of this moment, this here and now IS compelling and true and… everything. To hear you say the same thing just slays me (not literally like running a mile with you). Thank you.

PS I’m sitting in a cafe and I swear I’ve heard 6 cover songs— kind of like devil Muzak w/ singing. Is this how the endtimes play out? Please don’t tell me it is.

I forgot you and that I don’t know you well isn’t a reason.

I’m glad I found you again today. I saw Susan Skilling had a “status” note with your name against it on fb.

What can I give to you? What gift to I have that will help you on your way? My hand. My heart. I’m not going to forget again.

love
Sheila

A good reminder for me … I’ve embarked on an experiment, a course of therapeutic massage. It’s changing my world. The hope is a terrible thing, but I’m climbing back inside my body — while sternly fighting the constant urge to overuse it. Doesn’t leave me much, but the little I have is a lot more than I had. The emotional journey is strange beyond words.

Unfortunately, I have no easy answers, your bullet points — thus far based on my experience — are fairly accurate. Reading them thusly only seems to reinforce the trickiness of this whole thing. So much is not known about this condition we call syringomyelia.

As you’ve probably gathered, like yourself, I’m an athlete, and maybe, in some ways — though I don’t know for sure — that makes this whole thing seem more challenging. It seems to exaggerate the changes that are slowly taking place simply because we tend to be very in tune with our bodies in terms of charting our progress through workouts and athletic goals. Going backwards — on this “superficial” level — is not what we’re looking for over the short or long run.

But truthfully, athlete or not, these kinds of changes are difficult no matter what — nobody wants to deal with a degenerative condition — but where I want to shine some light, and in doing so reinforce the positive, is to say that because you’re an athlete your strength and ability to recover will be tremendous assets from here on out. It’s been true for me, even despite the apparent difficulties.

As far as any specific tips, I’d say this first and foremost; find a good neurosurgeon who is experienced with this sort of thing and don’t settle for one opinion on treatment — they do vary, even if slightly. Otherwise, I’m kind of winging it. I’m exercising as much as my body will allow — sometimes it’s painful, sometimes not as much — as I feel it’s important to keep my conditioning up. Is this the right thing to do? I don’t know, but it feels right. Pain-wise, well, I don’t really take pain medication — save some over-the-counter pain reliever from time to time — as I don’t like the side effects and don’t feel they really work.

I know you’re worried about your syrinx getting worse if you exercise, and as far as I’ve come to understand — from my research and speaking with doctors — there is no definitive answer on this one. As you read, I continued to ski and work out long after my diagnosis. Did it have an affect? Who knows? So go with your gut on this one, and pay close attention to how you feel. I’m definitely not an expert.

As you also read, at my December postsurgical follow-up, my syrinx is subtly smaller. That’s good. I have another MRI and follow-up in March, and the doctors said things are usually significantly better at that point. We’ll see. Either way, I don’t regret having surgery. It was tough, to be sure, but based on all I knew about my condition and what would likely happen in the future, I felt comfortable rolling the dice and going for it.

I hope whatever you decide to do — surgery or no — you feel comfortable with it and stay positive and strong. The journey and fight can be tough but it can be transcended.

And, please, don’t hesitate to contact me with any specific questions you might have… I’m more than happy to help where I can. Peace.

So this SyringoM thing is a bummer, please correct me if I’m wrong?
1. No cure
2. No way of knowing where it will go next
3. A life of pain meds
3. The loss of mobility (with of without surgery)?

This is just what I read on the internet, but I am lucky I have very few syptoms, I am a cylclist and I run and swim and have just stated with triathlons.

So now while we still don’t know what to do I mannage the pain and I don’t excercise for fear of straining this syrinx.

You on the other hand souns like you were much braver than I a now? Any tips?

The syringomyaelia was cause by a 18 year old back injury flaring up now because of all the excercise.

I would like to understand this thing so that I can fight it.

Thanx for your cnadid insights

In South Africa SM is rare amnd I have n=beem to one neurosrgn who is very good but has not given me any prognosis or treatment plan yet.

I am a mother of three and a cyclist and jogger. I just did a triathlon in Deecember. So for me this SM was aggrivated by exercise and straining. I do hear that swimming is ok. So when the pain is a n=bit better that is what I will do,

I realise every case is different and I appreciate your candid story. I obviously hope not to lose any mobility and my only symptom is numbness of my chest area and neck and back pain.

I also google’d it and also found too much info and too little info at the same time.
My dr said : you will have pain for the next 40 years so live with it”. I’m not accepting that.

Do I’m am lookin g for great NSurgeons in South Africa, have found 3. Will in the next few weeks get some opinions.

I someties feel so fragile with this thing in my spine as if any slight movement can just be the wrong oe and the I remind myself that I have mountainbiked on rought terrain and I am Still here.

Thanx for you blog

Will checkback in sometime

Tried to post a comment a few days ago. Don’t think it went through.

Not going offer any platitudes here. I do remember something Suzuki-roshi once said, that life is like getting on a boat that is going to sail out to sea and sink.

This of course is horrifying to most Americans, and that surely includes moi.

But lately I’ve been having this experience where I’m suddenly stopped in my day-to-day and realize, I’m going to die.

The voice is always friendly (unlike other voices which I won’t talk about), and almost—nonchalant. And real.

And I think how I have reality flipped around, where what I think is real is going to pass, and what I’m frightened of and think will never happen is actually what/who I am.

The Tibetans believe each time we die we have another chance to merge with what is real. Most of us are too scared and eventually fall back to earth. The trick is to work toward that merging while we’re still alive.

The voice also tells me I got about 30 years. Not forty or fifty. I guess I’m not a vampire, or Tom Cruise in Vanilla Sky.

And then I get another chance— at reality.

Be well, bro.