Re: [Scoliosis/Re:

[Guest guest]

Loriann - Just wanted to let you know I'm the person who posted! I've known

for years...I'm one of the original Fiesties. I haven't been posting

for awhile, but I do read as many of the posts as possible - I have continue

to learn from many of you, but the best thing about this board is knowing I'm

not alone.

I wouldn't wish this condition on anybody but the word that comes to mind

when I think of all of you and regardless of mood is resilience! Through the

impact of scoliosis and surgery(ies) on lives in countless ways we build

resilience and spirit and hope and it was so much harder when I felt like I was

the

only person w/scoliosis in my part of the world (Austin, TX) in 1994. What a

difference 5 years and the internet made! By 99 I found LaGrone, holistic

physical

therapy and others who had had surgery and thrived. It made all the

difference.

I didn't mean to do more than just let you know I'm still around. I called

but somebody came in to check her " rash " (a " rash checker? " ) - no

really, I'm sure that is important to gage the progress of her allergic

reaction,

but she sounded good.

Everyone have a peaceful evening....take good care, Jennie

Brief History

-Scoliosis (diagnosed at age 13 by family dr. no brace, no surgery)

-Physical therapy and exercise when sciatica pain became a major problem and

curve worsened in early 40s

-Fusion T6 to S1, 1994, Austin, TX

-Retired early from the State of Tx/SSD due to back and depression

-Holistic physical therapy that included exercise,

hypnosis/meditation/presurgery tapes, ice therapy, counselling (this was the

most helpful P/T I've ever

had)

-Revision for break between F4 and F5, 1999

-Chronic pain since 199

* volunteer work w/elementary and hospice (helping others is a good way to

distract from pain)

-Oxycontin 10 mg, Celebrex, Neurontin 900 mg, Topomax 200 mg, Botox

injections (every -3 months (back), Lidocaine patches (5%?), Ambien (every

nite),

Wellbutrin; depression

-Walk 2-3 miles 3-6 x a week

[Guest guest]

Hi Loriann - I didn't mean to sound like I was " fussing " at you about not

calling me by name. I'm not surprised you wouldn't know who I am. I haven't

posted in quite awhile. I realized I didn't sign my post and I just wanted to

get

the info from out asap.

The break was between L4 and L5 (lumbar). Although the rods put in in my

original surgery (CD rods) were removed in the 99 surgery, new instrumentation

was

put in to around the

L4 and L5 (standard procedure, I think). I had an MRI recently w/the intent

to finally send it to be read. I haven't seen LaGrone since my one year

followup. I've changed insurance since and and White is going to give me a

hard

time for any out of network service. They are reluctant to even give

referrals within system. It recently took me two months of advocating for myself

nonstop to get a referral to a dermatologist because of hair loss - probably

aggravated by the stress of trying to get a referral!!!!

Anyway, the MRI was a disaster. They were supposed to do a dye contrast. They

put in the IV and then after what seemed like hours in the tube, they said

they couldn't do the dye because of the instrumentation - they referred to it as

rods, and once again I corrected them because my rods were taken out in 99.

All along I have told everyone about the instrumentation in my spine at the L4

and L5 level - it is in my records! which noone bothers to read apparently. So

the reading on the MRI which took so long to do and with no contrast stated

simply that there were only signs of a " few bulging discs in the thoraic " and

basically no pictures could be taken of the lumbar because of the

instrumentation. So now I had a useless MRI and I'm back to square one. From

reading recent

posts - and I think I may have missed a few critical ones - I may need a CT

and x-rays for a reading which is what I want and from a specialist before I

see a doctor. Like all of you, I don't want surgery unless I have to have it. I

just want to know how my twisted spine is doing at this point in time!

Well, I see I diverted from the questions you had asked Loriann. Last August

I was in a major car accident - I passed out for all of 2 seconds or so which

is all it takes. I found myself flying through the air - literally. My

thoughts were, " I could die... " And when I landed I was still holding on to the

steering wheel - the wheels of my 2002 Hyundai Sante Fe were folded underneath

it

w/the front caved in toward me and the right side and left caved but there I

was in my little " cockpit " very much alive. The policeman said I had made a

calulated move of about 1/2 to one inch that avoided hitting a whole bank of

cars

stopped at a stop light to the right of me - there was another bank of cars

to the left - I hit the car door of one but hurt noone - thank God! I was awake

but in shock. In the ER I told them about my back and asked for back x-rays.

The upshot is they were never done. So I have no basic back x-rays to send a

dr. that's why I requested the MRI and now I don't have that....

I have pain all the time and the level shifts from about a 3 to a 7. Over

that it is unbearable. The combination of drugs, patches, and alternative

approaches I use work pretty well for me, but I'm constantly open to new

approaches.

One of the major things I've learned is that avoiding the pain doesn't work.

For me, being aware of the pain, familiar w/it and recognizing that it will

always be with me (until a method or cure for chronic pain is discovered, that

is

- and I never give up on that!). I used to try to ignore it and by the time

I paid attention I would be in so much pain, nothing would control it. Now, I

monitor my body quickly often and ask, " What do I need to be comfortable? "

Doesn't take long and usually something works - if it's a quick self- hypnosis

(which really helps) or pain patch, or past time for meds, or a walk.....or if

I'm too uptight or angry about something...

But as the day passes my pain increases and that's why I walk toward the

evening - to give my bones a workout - then I relax w/my foam pillow in a

recliner

(that vibrates) w/the windows open to a cool breeze, read and maybe watch

something funny. My kids are grown but I remember how smaller kids was a big

challenge w/my back so I feel for those of you w/younger kids. Since the 99

surgery my muscles and nerves cause the most intractable pain. Like claws in my

back

that won't let go....and some of that stays about the same.

I've talked enough for one morning and if any of you made it this far through

this post, thank you for " listening. " I hope you are having as active a day

as you can - that seems the best medicine going...at least for me. I'm about to

head to Lowe's to pick pain colors for the den - I'm hoping to find a color

in the burgundy family that isn't too dark but isn't too pink or red....I want

the room to be comfortable, cozy and inviting, but not too small....then to

Borders to write and study up for Clinical Hypnosis training in Seattle, WA

next week. I'm going to check on this a.m. Take care everyone, Jennie

[Guest guest]

Hi again! I'd say that was a definite Freudian slip about the pain(t) colors!

Yes, the accident could have been much worse...if I had hurt anyone else, I

don't think I could have lived with that. It turned out a blood pressure

medication I was on caused the problem. My blood pressure " bottomed out. " I had

lost

30 lbs from changing the way I eat (permanently) and from having 3 doctors

over a period of a year. I think from what my mom's primary physician recently

indicated (he's leaving, too), and White is having some problems (I can't

imagine why! I just can't resist a little sarcasm here...). Basically,

although I was going into the dr. on a regular basis, I didn't have a dr. long

enough to establish a relationship before she would leave S & W. I have a new dr.

once again.

Does anybody worry about the # of x-rays and CT scans you've had over the

years.... I guess at this point, I am going to have to once again jump into the

advocate's role and ask for CT and x-rays. I'll send everything I have to Dr.

La Grone, but I also thought I send them to Dr. Rand in Boston as he seems to

be one of the top surgeons mentioned on this board. I guess for a reading as to

how my spine is doing, these are 2 of the best.

I don't have rods now - I don't think - although they technicians doing the

MRI referred to the instrumentation as rods. It is just the instrumentation

used to hold L4 and L5 while this area was healing after fusion.

Be careful how you throw yourself across the bed! Oh, to be able to throw

myself around anywhere, anytime. That's gone along w/jumping out of bed,

skipping, twisting....running.....oh, well, can't take away the dreams of doing

these

things....someone mentioned dreams of flying awhile back - I've had those -

some of the best dreams ever!

84 degrees in Central Tx...peace, Jennie

[Guest guest]

Ann, I share your concern about . I think she did know something was

wrong, but noone was listening to her at Dr. Ondra's office was my

impression. It's a good thing she advocated harder for herself in this last

visit

because to delay any further sounds like it would have been very dangerous for

her.

I agree that following our instincts is excellent advise!

When was in the hospital she was having a great deal of trouble and

I was surprised when they let her go home. She was having the allergic

reaction problem then I believe and they were concerned. is very

assertive, but even when we advocate for ourselves it is so difficult to get

doctors

and sometimes even moreso their staff to listen.

will appreciate knowing you were thinking of her. I'm sure she's

still in surgery now (8 hrs) but I'm hoping to hear from Matt some time today or

tomorrow... Jennie