Saturday, September 12, 2009

I must apologize for not posting here in so long. I know I have many followers here who check often to see what is going on, and when I do not post, they think the worst. I appreciate that!

This will be short. I wrote a long blog update on Microsoft Works, intending to use "copy paste" to put it all here. However, in the last few days, and several times tonight, something is wrong with my system or something. When I hit "paste"...internet explorer shuts down.

So, briefly, I'm here.....we went to Alaska and had an incredible time. Even had a close encounter (safe kind) with a grizzly bear! I hope to write more about it later.

I am not going to Bethesda, MD, as it turns out. When I got home from AK, I checked my messages and there was one from the Bethesda doctor telling me, a week before my trip, to cancel my trip, he doesn't see anything on my imaging that shows anything he can surgically do for me.

I cried hard that night. I was so shocked. I had made the appt six weeks before! A dear friend in Maine had purchased tickets for herself and her husband to be there to help me get around. I felt hopeless, and lost all faith in the medical system. I was angry too. And yes, I asked God, "Why?" Why have me make these appointments only to be let down like this?

I questioned, to myself, why did this happen, why did the surgeon say he saw something in my imaging that made him want to see me, only to, a week before my trip, call and tell me he was cancelling my appt? I could only believe that something happened that had nothing to do with my imaging or what could be done for me...something happened to where he did not want me for a patient.

So, I know many of you are writing to me, wishing me well on my trip, but it happens I'm not going. At this point, I'm without a doctor in terms of a neurosurgeon. And mentally, I'm at the point where I'm going to just live with what I have, if it all continues to decline, I have to accept that this is my lot in life.

Of course, I might change my mind later, I might decide I need to see a surgeon, but in order to carry on, to pick myself up and dust myself off, I need to think that I'm just going to stay home and deal with what I have the best way I can. That there just isn't a "fix" for me. Short of a miracle.

So, good night and I hope I can get back on here soon. I think often of posts I want to make, of beautiful things I get to enjoy out the window. I want to share about Alaska, it is completely "as advertised!"

If I owe you an email, I'm sorry. I think of each of you all the time, truly I do. But answering emails seems continue to be difficult. But I'll try.

love to you
"By His Grace"


One Sick Mother said...

Oh no! ohnoohnoohnonononononono!

I can't beleive this! I;m sorry to have a tantrum all over your comments but it is wrong, wrong WRONG to leave you without help!

I had such hope for this last guys (what changed, I wonder?)

I really hope that the underlying reason for this -whatever it is- is revealed soon and there is more hope on the horizon for you,


Lurker Mom said...

The last thing I would ever want to do is encourage false hopes, since afterall they are exactly the cause of your current distress.
BUT. I will tell you this same NS initially told us he could not offer a surgical solution. He continued to review the case and 2 months later he called to say he had reconsidered. My understanding is he meets with the geneticist monthly. Perhaps she would be willing to advocate for you, or at the very least, obtain a clearer understanding of his thinking.
You've been at this longer than I, so it's likely you already know about Dr Menezes in Iowa. But if not, that would seem a worthwhile consult.
Best wishes on healing your spirit as you resume your pursuit of options.

By His Grace said...

Lurker Mom, thank you for your comments.I have a friend who just came back from her appt with this doctor. She had her appt planned to occur right after mine, same day. And it went very well for her. She liked him a lot and got a good evaluation and will be having a few surgeries with him soon.

You know, I figure God didn't want me to have surgery at this time. It's all I can think of to get me through. I'm stopping thinking about surgery and in a way, that feels good. I just had the "surgery track" for so long, it was hard to abandon. But I also have heard good things about Dr. Menezes and esp. with craniocervical instability.

have you had surgery with Dr. H? How are you doing?

take care and be well

Lurker Mom said...

My son had the filum untethering 3 days ago. No complications thankfully, but no symptom relief either (so far). It's been a 5 year struggle all told, but only severely disabling and life changing for the last 2. That's a drop in the bucket to most of the folks I read and follow. You have all been key to me keeping my own perspective and my faith. I take a lot from the forums and blogs, but rarely feel as if I can contribute. This was one of those instances. Having weathered abandonment by physicians on more than one occasion, I recognized that defeated exhaustion in the tone of your post. We too have needed and taken respites from the unending pursuit of a doctor willing to commit for the duration.
I wish you peace.

By His Grace said...

Lurker Mom, your writing is profound. It hits my "nerve," that's for sure.

The "weathered abandonment" and "defeated exhaustion," talk about putting feelings into words!

How is your son doing NOw? How old is he?

The SFT is a VERY rough surgery to recover from. I have a friend who has had 11 of these surgeries and she says the SFT was the worst by far. I am 5.5 years out from mine and I still have just as much pain and weakness "below the waist" BUT big difference is, I was 56 when I had the SFT, and I still have all the bad instability problems. Dr. B told me a year ago that I still have the pain below the waist because I still am so unstable at the skull base (and because I ain't no spring chicken, ha)...

Prayers for your son, LM! And I do feel bolstered by your words, and understanding of how sometimes, taking a break from the "quest" is the only thing to do.

God bless you

Lurker Mom said...


My son is 19. At 9 days post SFT, he'll be counted as a raging success from the surgeon's standpoint. Except to treat a single spinal headache the day of surgery, he has not required pain meds. The incision is around 2 inches in length and is healing perfectly. Operative report says the filum was thick, had blood vessels, and briskly recoiled after being cut.
All signs it was indeed tethered/tight.
And yet.... no symptom improvement. Rather, my son is inching his way back to his pre-surgery baseline (especially with respect to his POTS which is actually a little worse).
One empirical change that's generating optimism is his
"straight leg raise" measurement has doubled since surgery. (A value which had remained stubbornly low despite 5 years of Physical Therapy)
The basis for my son's initial NS consult was to R/O cranial settling from EDS. He has the congenitally underdeveloped clivus and retroflexed odontoid, but no frank brainstem/cord compression on dynamic mris. In any case, we are not home free in terms of correcting abnormal anatomy.

Beware. Compliment my writing, get a book next time. The truth is kinship naturally floods until it oozes from me. Guess I was at a brimming point when I read your Sept 12 post.
I know your movements are still weighted by grief, but I look forward to reading someday that you've re-energized for the good fight. As for Dr. B saying you are no spring chicken....that seems a poultry excuse to me.
Sorry couldn't resist.
Blessings and hugs, BHG.

By His Grace said...

Lurker Mom, how is your son doing? I've been wondering and don't know how to get in touch with you! If you read this, perhaps I can post my email here for you to write to me privately. But I have been thinking of you and your son and praying for things to turn back around. I do know that feeling of feeling so great post op and then it all comes rushing back. A few days after my surgery and I could take the stairs two at a time...then...well, it's back to what it was now. I pray tho, it is different for a young man!!