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Joined: Jan 2008
Posts: 21,346
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Sue22 Offline OP
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Thanks Donna and Possi,

I made an appointment with the neurosurgeon that my chiropractor wants me to see.

With the other neurosurgeon's attitude, i really couldn't tell what was what:

"I wouldn't call the compression severe and thus I don't think the surgery will help much, but if you want it, its up to you."

I'm not sure what kind of answer that is. Well, it is an honest one.

But mostly I just want someone then to explain to me why since january I've been able to sit at my desk to work maybe 1 month out of the last 6 months; though I sit in a chair with a back with my legs up, it is slowing me down at work. And several of the months this year, I couldn't even do that, had to stand for about a month or two straight, then another few weeks again.

Can't drive anywhere without ice packs. Can't drive anywhere even with ice packs for more than about 45 minutes or so, when things are "good". When things are flared, all driving makes matters worse.

And for the last 15 years, can't sit in most chairs, most cars, most forms of transportations.

And currently can't even lay in the bed to sleep, even with my thin feather pillow, neck in neutral, etc.

For last 15 years, its been ice and heat, PT and chiro, ultrasound and antiinflammatories.

And for the last two years, facet joint steroid injections.

I do smile a bit when I fill out the forms asking which of the following (where you check off boxes) you've tried (in the last 2 years). I've "tried" just about every one of their nonsurgical suggestions. Some work at keeping the symptoms to a minimum or at least bringing them down to a minimum, and some were fails.

The chiro and interventionalist and rheumatologist do have the muscles a lot less in spasm, but still, sitting is becoming more and more of a problem.

I guess I'm just frustrated with that.

Though the Humira is helping everything else so much, so hoping once the nerves recover from the last flare, maybe they'll stay settled. Hoping, I guess, that the inflammation was doing more of the compression and that it was the combo of not too bad bone spurs plus bad inflammation.

Well, regardless, looking forward to the opinion of the next doctor. I have a lot of faith in him, my chiropractor recommends good people. I've been seeing him for almost 3 years now, twice a week; as much a friend as a doctor, so I trust his opinion.

Whatever is causing the nerve compression, that's what causes the kinds of muscle spasms and inability to sit that I've been dealing with, so says both the chiropractor and interventionalist.

Thanks again, especially for allowing me to think out loud and get feed back on my thoughts.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Nov 2002
Posts: 6,928
Likes: 3
Addicted_to_AS_Kickin
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I am glad you are seeing another dr. Do you have to wait long for your appointment? All of those years of pain and no way to get comfortable gets old doesn't it?
Ever since my surgery, my knees have been giving me fits. I think it was from laying on my stomach head down for 4+ hours but what do I know? :o) I got Synvisc in the past that helped. I think I will try it again.

It's always something isn't it? I hope your compression lessens with calming of the inflammation.

Hugs.


[Linked Image]

Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

Joined: Jan 2009
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Supreme_AS_Kicker
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Didn't sound like the first doc was the one for you. If both you and your husband got a bad feel, it would suck to have to go through the pre-op, operation and all the post-op visits with her. <shudder> Dreading every step of the way....yuk. Hope the 2nd opinion gives you the answers you need in a way that gives you the comfort to make the decision. Is the 2nd opinion doc the one who wants office notes from 1st opinion? Hope not. I think the 2nd opinion should be without anything but the referring doc's notes...all equal playing field for both of them. But that's me. Good luck. Hope it's not a long wait for the 2nd opinion.


DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
Joined: Jan 2008
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Sue22 Offline OP
Very_Addicted_to_AS_Kickin
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Hi Possi,

wonder if your knees hurt more simply because now you are on your feet more now that your back is better? Just a thought.

Thanks for the thoughts and experienced recommendations.

I'll keep you posted. Appointment isn't until mid to late august, but that's ok, it gives me more time to evaluate the effects of Humira.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jan 2008
Posts: 21,346
Likes: 2
Sue22 Offline OP
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Likes: 2
Hi Rumble,

Yeh, I didn't make that clear.

The second doctor, the one that my chiro wants me to see, is not the one who wanted to see the first doctor's notes. To me that wouldn't be a second opinion.

This new doctor, the one I will be seeing in August, didn't want to see anything ahead of time. Just come with my MRI / xray disks. This gives me a better feeling.

Experience with rheumatologists make me realize, those who wanted to see all the other doctors notes never really listened to me; they had their mind made up, to the negative, before I ever walked through that door. Those who wanted to make their own decisions, those appointments always went much better.

Its kind of like any relationship. We get a bad feeling, think this time it will be different, but its always the same way. Starting out with a good feeling is a much better way to start out.

And you are so right. I wouldn't want someone with such a cavalier attitude operating on me. If she doesn't really care what I do, does she really care what she does? She has an excellent "technical" reputation, but to me that's only half of it. I want someone to care (more).

As more time goes by since that first appointment, I'm starting to feel better that things aren't as mechanically messed up as the symptoms would have suggested. So maybe, just maybe the inflammation was affecting it greatly. We'll see.....if not, then what makes sitting so darned impossible! That is the million dollar question.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Nov 2002
Posts: 6,928
Likes: 3
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928
Likes: 3
Hi Sue.

I have had those thoughts about my knees. They were hurting more in the hospital though immediately after surgery. I think maybe I was so preoccupied with back pain that I had learned to ignore the knee pain. :o) The gate that squeals the loudest.....

You are right about the time until your appt. and taking the Humira longer. I hope the Humira does calm things down. I am so thankful that you are feeling better even if the pain is still there. I would think that feeling better in general would make it a little easier dealing with the rest of it.

I am so glad you are moving on to talk to another surgeon. I had a lot of my family ask why I didn't get a 2nd opinion with another surgeon but I was completely at peace with this one plus all of the recommendations from my other drs. Having confidence in your dr. is a huge part of the battle.

I so understand the sitting problem which after a while turns in to a standing problem. Do you find that you just have to constantly change positions?

Hugs.


[Linked Image]

Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

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