Saturday, January 3, 2009

New Appointments

Well, my dear Dr. Fu felt quite badly about my bones being so much worse after 18 months of pamidronate IV treatments.

An online friend who lives on the other side of Portland, OR, told me about her endocrinologist at OHSU, a Dr. Madison. She said that she went to him after she'd undergone 2 years of a treatment and her bones were worse...

Dr. M put her on daily Forteo shots (at home) and in six months, scanned her forearm (bone density scans always scan lumbar region and hip bone), pronounced her fit for the extraction fusion done at TCI, he even conversed with Dr. B on the phone about the case. Dr. B did proceed with her fusion, so her bones must have been acceptable to all sounds like a possibility for me.

I still want the fusion. I'm not afraid of the halo anymore. I'm afraid of NOT getting the surgery, and I know the 4 months of halo are part of that. I'm back on the white horse and joining the cavalry.

My online friend told me it takes months to get in to see the great Dr. M.

I told Dr. Fu about Dr. M, and he said he wanted to get me in to OHSU, and he'd talk to Dr. M.

He must have done so, because the other day, I received a call and I have an appointment in Portland at OHSU with Dr. M for Jan. 15. This should be interesting.

Dr. Fu also wants me to see a local neurosurgeon for a 2nd opinion on my skull/neck. He put in to work comp for authorization and they approved it.

I'm so conflicted now. I don't want to see another surgeon. I like the surgeon I have, except he is 3000 miles away. But, this surgeon is from a spinal cord injury center, and I've never been evaluated by such a specialist (except Dr. B, of course)...maybe this is something good. Maybe it'd be good to have someone local who would be on board to help in the event I needed local help, post a possible surgery in NY. Another surgery in NY.

I guess I will go with the flow. I finally received approval for the Lidoderm patches after over 3 months! So, on Friday, that was our main reason to drive the 35 miles to town, to get the patches.

And deja vu all over again, the gal at the pharmacy drive through window says, "Your Lidoderm patches are permanently denied." I said, "No, I got word they are authorized." Well, in the work comp computer, they are still "permanently denied," and those words humiliate me and make me feel like a criminal. 70 miles round trip and I don't get the patches which do help me so much! I was so mad, really I was. What kind of game is this?

I will call work comp on Monday and they will make the notes in the computer and my husband can make the trip to town to get the patches...sigh...

On the other hand, what fun today watching the birds coming to our little feeder tray on the outside railing: Stellar jays and blue jays and several little birds I don't know the name of. And one big female woodpecker.


Chuck Martin said...


Sounds like great news and we'll pray for the guildence & skills of the new doctors. We're glad you're back on that horse.You and P are always in our prayers.

Love & Blessings,

L & C

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By His Grace said...

Friends Chuck and Laurene, your friendship to me means so much. THANK you for your prayers...they mean a lot.

new friend Lisa in Alaska, I am so humbled by your words. As I type exactly what I am going through, I always wonder, am I doing this right? People don't want to read day after day about these things.

Then I hear from someone like you who says I help to describe your pain and your life, and it really gives me the nudge to keep going. I know many like you read this blog...I've been so blessed to meet people like you all over the world who are suffering with Chiari and related disorders, and I even got to meet a young woman who suffered a Jefferson fRacture like me, the only one I've found so far!

Lisa, you are not alone! If you want to have a tight knit support group online, people who will pray with you and whom you can help uplift and pray for, about all aspects of life lived with these conditions, please join me at Healing Friends! This is extended to anyone reading this. We have a loving group of Christian ladies (and one great guy!) and always wish for more members.

Check out the site at

And Lisa, thank you so much for taking the time to tell your story. It is tragic and I am so sorry for all that you suffer. I'm so glad you have that good husband by your side. Please keep visiting here and keep on commenting.

hugs, new friend and old!