Monday, October 26, 2009

Update on Lyrica and new doctor

The Lyrica is working very well! I am taking only 100 mg, at bedtime, and am sleeping great. No bad dreams, and I don't feel too "druggy" when I wake up. It seems to help the oxycodone to be more effective...somehow.

The other thing that I noticed is that the Lyrica seems to have the most effect on the tethered cord symptoms (below the waist). It is very helpful for that. I am still very weak, and if I start to walk or "do" much, I feel the TC pain. But just sitting, resting, lying down, the TC pain seems alot more controlled.

I still have to take the 5 or 6 doses of 5 mg oxycodone throughout the day, however, for the continued pain at the back of my head. (I am going to get an appt. this week, I think, to ask my primary to up my dosage on the Lyrica since I am still below the recommended starting-dose).

That back-of-the-head pain, in fact, seems to have amped up. I do not know exactly what that pain is from. I think I've written that the pain is higher than the occipital pain (under the bottom of the skull in back) that I also have. There is a strong pain that is higher, middle of the skull but just to the right of center, that haunts my days and cause me to spend hours each day with ice paks under my head.

It seems to fade in, get strong for a few seconds, then fade out...coming and going, a slow "pulse." I don't know what this pain is. I know from my MRIs that one of my cerebellar tonsils is pressing right up against the brainstem and that is on the right side (of course, posterior or "in back" of the brainstem). So, I don't know if this pain is from that pressing...or the blockage of CSF flow that that tonsil causes...I just don't know. I DO know it is too high to be the C1.

The pain I feel "sub-occipitally" IS from the C1, I think. I always have a very tender spot right in the center. You know...if you feel the back of your neck/head and you can feel those two tendons going up to the back of your skull and you can feel a deeper spot right in the middle. THAT is "sub occipital" which also is right where the back of the C1 is.

I remember when I broke my neck, I never thought that the neck, or cervical spine, went way "up there." I thought of my neck as just being what I saw from the front, under my jaw down to my shoulders. It never had dawned on me that the c-spine actually extends way up to the back of the skull!

I was lying in the hospital bed and my lackadaisical neurosurgeon (and my concerned husband) were at my bedside. My NS was telling me that it would take a long time, but I'd "be fine." I did not need surgery, he told me. In my drug-induced cloud of a mind, I was surely happy that I did not need a surgery (so I was told) nor a halo. That I could go home in the little collar he'd given me and in a month, I'd be "fine."

Right at that time, I told the NS that I hurting so badly at the back of my head that I was sure I was bleeding there. He scoffed at that. "No, you are not bleeding back there!" he said.

I demanded he put his finger back there and see if there was blood, it was hurting so badly. He did, and when his finger just touched that "spot" that I just described as being that deeper "hole" under the skull that you feel when you touch that area, I YOWLED with pain and yelled at him to take his finger away! Just that light touch was incredibly painful.

He didn't explain why it was hurting nor what it was, but later, through research online, I learned that that is the area you find the C1.

And today, 5.5 years later, I still have tenderness in that spot. It can be very tender, or just mildly so. Perhaps it is affected by times when my central nervous system is riled up. When the higher-up pain is slowly pulsing, that is when that deep spot is the most tender. If I touch it, I "feel" it. If I were to scrape it a bit with my finger nail (which I really avoid doing), I would YOWL with pain again just like I did right after my injury. Why it is so painful still is something I'd love to know...but one never, ever goes in to see a neurosurgeon and has enough time to ask such trivial questions.

I have an appointment with the new NS.

After being brushed off as being "spontaneously healed" by my NS of 3 years in NY, AND after being told there was nothing he could do for me by Dr. Henderson in MD (he said this on a phone message a week before I was to fly there for a consult. He'd never actually seen me when he offered this opinion, for whatever reason), I was rendered "neurosurgeonless."

My psyche was so jaded that I said I'd never go see a NS again. I expected to live with this the rest of my life, perhaps 30 more years.

BUT, my primary felt I needed to have someone "in charge of my neck." And then my work comp medical examiner also felt that it was strange I didn't have a NS to manage my care. So, my primary sent a request for a NS to the OHSU (Oregon Health and Sciences University) neurosurgical division.

How it works, I learned, is that the OHSU NS dept. (forgive my abbreviations, my hands and neck and brain are tiring) has many NS's there. They receive the initial request from my primary, they look it over and delegate it to one of their doctors.

I don't believe they received very much of my file. I believe it is a simple form that is filled out on my primary's part. There are 2 "skull base" experts in this department, and I expected I would be assigned to one of them. But I was not.

I have an appointment with Dr. Brian Ragal on Nov. 18. From his brief resume online, I do not really see any expertise in the area I am having problems with. But, I firmly feel God is in control of all of this, and who I see is up to Him.

I also am not going there with any expectations or Hope at all. I have seen the LORD allow me to go 3000 miles away, have a tethered spinal cord surgery, have nothing done for the instability of my skull base area, I've cried really hard many times over disappointment, including the cancellation of my appt. in Bethesda in September (such deep and painful disappointment to be cancelled without even being seen), that I am not going to allow myself to go to the place of Hope ever again.

I'm not going to build up Hope about being understood, being "fixed," or anything at this time. I hate the idea of going there and having to talk so much about my situation and what has happened and what I am experiencing, etc. I'm tired of talking about it, and talking causes me pain in the throat. seems God has set this all up, it's not anything I have perhaps that IS the idea, isn't it. That God works when we give up and let Him do the "doing." I don't know.

I'll let you know.


Anonymous said...


I wrote you an email (finally) today -2 emails actually. One I started a month or two ago but hadn't edited (I meant to delete it when I sent the new email - there is some repetition and I was exhuasted when I wrote the first email) but I'm still fatigued, and managed to send both emails to you.

Perhaps you can see my emails as God's intervention? I cannot imagine how disappointing it must have been to have had the dr. in Bethesda cancel on you on your answering machine shortly before your trip. I wonder how these doctors sleep at night sometimes.

As I have heard many times, there ARE good doctors out there, but you have to keep searching. I know that sending your no doubt huge medical file out to a couple more doctors would be a pain - perhaps there is a way to do it without engendering any "hope" at all? Expect the worst, and perhaps something better than the worst will come along? I pushed so hard to find a good Neuro - and no, I still don't want to go back to one every again, but I have some names of some very good neurosurgeons. It's ridiculous that they didn't assign you to a skull base surgeon @ Oregon. Of course, it's really not that surprising. My first two, three?? neuros weren't skull base ns's - I didn't even know that skull base neuros existed then.

You've done too much work to give up now. I meant this to be a gentle, warm push but feel like I'm pushing too hard. I have not endured the disappointments you have - other disappointments but not as tough as the ones you have faced. So, really, I have no place in trying to encourage you to try again. That does not seem to have stopped my mother from pushing me - if I don't do what she advises, she simply repeats herself until I do what she recommends so that I don't have to listen to her advice yet another time! Of course, I'm not your mother and don't have that power.

I hope to hear from you when you get a chance.


By His Grace said...

Hi D,

Thanks so much for your post. It IS encouraging to read or hear a "push" now and then. And to know someone is listening!

I am feeling better about my upcoming NSG appt because someone told me, online, that he goes to a teaching hospital and one NSG does the consult, then he/she brings this case before all the NSGs and they put their heads together, and decide what should be done. So, I feel a lot better about it.

No longer jaded!!

thanks again, sweetie!