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cowprintrabbit
10-15-2004, 11:17 PM
I am a 26 year old female with a 45 degree primary curve (lumbar) and a 44 degree secondary curve (thoracic).

Growing up, it was about 35 & 40 but I wasn't braced because we lived in a hot humid climate. I have been told by doctors, "Don't worry, it's not going anywhere". Well, 4 and 5 degrees in 4 years is somewhere! (Not as bad as someI've read on here, thank goodness!) I can feel it beginning to rotate (rib sticking out, kyphosis, arm & leg pain), but my primary care doc and orthopedist say I'm fine.

Finally, ortho sent me to neurologist to shut me up. He reviewed my Xrays, sat me down and advised me to have surgery. WHAT! That is such a total reversal I am still in shock 3 days later... Now I am waiting on a referral to see the spine surgery expert at University of Washington (Dr. Ted Wagner?)

I found this site, and am sooo glad to see other adults! I found a couple of boards that seemed to be more oriented toward children. I guess I'm still tying to work through all the info I've been given (or not given.)

Christine

spincon58
10-16-2004, 12:13 AM
Hi,
Welcome, to this NSF...This forum has been a godsend for me...It has helped me through all the pre and post aspects of surgery...I have met many wonderful people on board..and hopefully you will to..Read as much as possible..There are two books that I read and also had my family members read..Scoliosis Surgery by Dave Wolpert...who happens to be part of this forum and answers questions periodotically and also Scoliosis Sourcebook who was written by my doctor. Micheal Nuewirth in New York....It makes sense knowing every possible angle about your condition, being prepared when interviewing doctors, and hospitals, and the team that are responsible for your aftercare.....Spend your time reading through the archives of this forum..many question have been asked before, and you'll get different answers ...for sure....
I am now 3 1/2 months post-op and I'm doing very well...It is a HARD recovery..being 46 and taking care of 5 kids , but this surgery is something that needs to be done if your having constant pain or your curve is progressing or both...The quality of your future is at stake when making this decision...so relax, read and ask questions..I am here to answer anything...good luck....


__________________
Connie

LindaRacine
10-16-2004, 12:53 AM
Hi Christine...

There can easily be a 5 degree margin of error in measuring curves, and there can be that much difference if one x-ray was taken in the morning, and the next in the afternoon, so please don't rush into surgery. At 26, your curves aren't going to increase rapidly, and it's entirely possible that you'll be able to avoid surgery forever.

Regards,
Linda

lrmb
10-16-2004, 11:43 AM
Hi Christine,

Just wanted to echo Linda's sentiment in her post. I am in a similar position to you, I am 28 years old and my curve now measures 47 degrees as opposed to 40 ten years ago. I recently consulted with three surgeons: one recommended surgery, the other two strongly recommended against it, advising me to wait until the curve progressed to 55-60 degrees. I have mixed feelings about "waiting" for surgery, but after having two eminent surgeons advise against, I feel there must be good reasons for it. They both seemed to think that although there was some progression, my curve could remain stable and unproblematic for another decade or so.

Good luck in learning about scoliosis; there is a lot of info here, hopefully it will help you make decisions. If you would like to correspond privately, my email is lrmb24@hotmail.com.

Take care! ~Laura

cowprintrabbit
10-16-2004, 12:39 PM
As for waiting - does extreme, life-distracting pain make a difference? Not trying to be argumentative, just trying to learn as much as I can before my referral. (You know how your mind circles when you have to stall...) I no longer mind being "crooked" (I'm married - who am I trying to impress ;) ), so if it weren't for the pain I wouldn't be considering it since the curves are relatively small and balance each other out.

My chiropractor has been the first one to actually walk through my xrays with me, and even 4 years ago, my vertebrae were starting to show arthritic changes... Does everyone with scoliosis
have vertebrae that are taller on one side or the other, or does that make mine congenital as opposed to ideopathic? None of the "real doctors" has commented on this - must remember to ask them. Any other questions I need to ask?

P.S. Connie, thanks for the book reccomendations - my local library has the one by your doc in stock, I will run out and grab it when they open.

Christine

LindaRacine
10-16-2004, 09:39 PM
Hi Christine...

Pain does make a difference. Only you can tell if it's enough to warrant surgery. I will warn you, however, that the surgery itself has a good likelihood of causing new pain. Before you jump into surgery, be sure you've tried different ways to address the pain.

In structural scoliosis (which is the type that almost all of us have), the vertebrae become wedge shaped. You can see a good drawing of what they look like here:

http://www.scoliosislinks.com/AlternativesDontWork.htm

Regards,
Linda

Denise Preuss
10-17-2004, 04:58 PM
Hi Christine,

My scoliosis was diagnosed when I was twelve. I had just started my first period so the Doctor said that I would soon stop growing therefore the scoli would not worsen.

Boy was he wrong!

As I've gotten older (I'm 45), gravity is taking it's toll and literally my spine was collapsing into a tighter and tighter "S" curve. My breathing and digestion were being impaired because of the mechanics of the loss of space in my body.

I had surgery this past July 30th and I'm happy it's behind me. Recovery comes with it's own annoyances but nothing like having a 5'3" body smushed into a 4'11" one. That's right...after surgery, I gained (a bit over) 3 inches in height. The shortness of breath is slightly improved at this point and I've had no problems with reflux since surgery.

So, what I'm saying is that aging and gravity will worsen your spine. I also, somewhere along the way, developed degenerative joint disease in my lower back. (OUCH!)

Good luck with your referral. Try to interview more than one surgeon, too.

Denise

cowprintrabbit
10-18-2004, 06:32 PM
Denise - that's funny that you mention breathing and digestion, because all my life I've been told that my shortness of breath with exercise and numerous digestive problems couldn't possibly be connected to my scoliosis. I was 5'8" in High School, now if I see the doc in the AM and stretch as high as I can when they measure me, I'm 5'6 1/4".

What degrees were your curves? Mine are only 44 and 45, but I guess it's better to have it done before it gets worse and while I still have youth on my side...

I called today to check on my referral, and the neurologist's office had sent it to the wrong place within UW. I had them fax it over this time, and now have to wait till Wednesday to call and try to get an appointment. And work is breathing down my neck for me to get the appointment set so they can order the temp... deep breaths....

I don't know if I have an option to see more than one surgeon - does anyone else have experience going through Group Health Cooperative?

lrmb
10-18-2004, 07:04 PM
Hi Christine,

Just a quick post. Do try if you can to get at least one second opinion. I wasn't at all convinced of the necessity of this until I had two very different opinions... It's a big surgery and getting more than one opinion can help you feel confident in your decisions.

Have you taken a look at Dave Wolpert's book on surgery (which you can get online from this foundation)? It's really great.

Laura

Denise Preuss
10-18-2004, 07:12 PM
Hi Christine,

I think my curves were pretty extreme...80'ish and 60'ish. Funny that I don't remember those numbers.

Interviewing more than one surgeon is important. You need to find the one who works right for you. For instance, the one your insurance sends you too may not be the best...he may not even be any good(they are out there). I think you are entitled to find one best suited to you. Call you insurance co.'s customer service and find out exactly what you can do.

Once you get names...toss them onto this forum for some feedback.

Also, I'm not sure that all surgeons will charge for consults. Can't hurt to ask.

Take care,
Denise

cowprintrabbit
10-18-2004, 07:35 PM
Originally posted by lrmb
<snip> Have you taken a look at Dave Wolpert's book on surgery (which you can get online from this foundation)? It's really great.

Laura

I ordered the online version and am going to print it out tomorrow :)

cowprintrabbit
10-28-2004, 05:09 PM
Well, I got the call on my referral yesterday (a week early!) and I called and made the appointment - 12/10/04. I've been reading everything I can get my hands on, and talking to some people, too. Supposedly, this surgeon is the best around this area; and UW is supposed to have a really good hospital.

It turns out my husband is a little freaked by this whole thing, but I'm going to try and get him to go to the appointment with me. I think if we stick together, we'll be able to be there for each other a lot better...

Oh, and I think I'm going to throw in the chiropractor towel. It doesn't seem to be helping my back pain or my migraines. I'm almost ready to forget the physical therapy, too, until I see if I'm going to have the surgery or not.

Christine

LindaRacine
10-28-2004, 05:14 PM
Hi Christine...

If you can't take your husband, I'd encourage you to take someone else with you. It can be a very intimidating experience, and it's nice to have a second set of ears that aren't so overwhelmed.

Regards,
Linda

lrmb
10-28-2004, 10:22 PM
Hi Christine,

I would also advise taking somebody with you, and if possible getting your significant other to take the plunge. Dave Wolpert suggests in his book to get your important support network to read the book, and I did this with two good friends. After reading even part of the book, they felt much more involved, and began to appreciate what having this surgery meant to me and for my life (and our lives). In the case of my partner, I also felt that I had been talking on and off about the surgery for a long time, but we had never sat down and focused on it without distractions. We decided to set aside a time the night before the appointment, by which point he would have looked at the book and we could talk in detail. This strategy worked well because we both knew there was designated time to talk and that before and after the time I would try my best not to obsess about it.

The first time I saw a surgeon I was unprepared, and so I didn't think of my questions (about a hundred of them!!) until I had left the hospital. For my second opinion I spent a lot of time noting down questions in one place when they came to mind, then before the appointment I compiled them all in a long list. I sat with my partner and we went through the questions; we agreed that I would do the main part of the talking, and he would make notes and interject if I forgot anything or if he thought that something needed clarification. I've heard that people can forget a lot after they leave the appointment, so it's helpful to have somebody else there, and maybe make notes.

For my third opinion I could not have my partner there, but a friend took time off work to attend with me. When I got to the end of the appointment, and the doctor was about to wrap up, I asked her had I left anything out--and, sure enough, I had. So she got the opportunity to ask the question.

This might seem a bit obsessive on the planning, but I for one am always a bit freaked out when seeing surgeons, and it was a great morale booster to have somebody else know what was (or should be) going on.

All the very best with your appointment, and hope this helps.
~Laura

suejeryl
10-29-2004, 07:24 PM
hi, everyone! it's a good idea to have your significant other be part of initial meetings with the surgeon; it just seems fair considering how much time and effort that person will expend taking care of you during and after your hospitalization. i include my husband in all my doctor's visits; he is a very interested party! good luck with your fact finding....

cowprintrabbit
11-04-2004, 07:50 PM
He has blocked the time out on his work calendar so nobody can schedule anything that would conflict :-)

Hopefully no one minds if I whine here - The pain is so bad today I had a friend ask me if I was on drugs because I am so dazed...

I wish I were, but I don't think I can take anything and still work. Advil, Aleve, and Aspirin are all no no's because of my stomach.

:(

lrmb
11-05-2004, 06:21 PM
Great news your husband could figure out a way to make it work! And good for you for encouraging it to happen :) :) I'm sure you will both be so glad you both went when it comes to planning the next step. Did you have any luck getting a name for a 2nd opinion? Take care ~Laura

cowprintrabbit
11-05-2004, 06:43 PM
Don't have a name yet; I should probably get on that... I wish this weren't happening right at the holidays. Do I just call Group Health customer service?

lrmb
11-05-2004, 11:07 PM
Hi! Does your MD not know of anybody else? Out of interest I looked on the scoliosis research society website (www.srs.org) and your man in Seattle was indeed the only one who came up... You could try Linda Racine's list too, I can't remember the link but you could search for it on the site. I know it would be a plane ride, but I hear there are FABULOUS people in San Francisco... Anyway, try Linda's list, just in case, if you haven't already.

Sorry to hear you're still in pain, by the way. ~Laura

lrmb
11-05-2004, 11:12 PM
http://scoliosislinks.com/ScoliosisSpecialists.htm

I think I saw another one in Seattle on this. L

kathleensrose
11-06-2004, 06:01 PM
Judy had surgery Freiday, 11/4. I told her I would think about
her, and I did. I spent from 8:00am to 1;30 pm having the
pulmonary test , exrays and CT scan. She was on my mind
quite a lot. I suppose she is in her hospital room now-drowsy and out of it. Heres hoping it was all a great success.
Kathleen Hutchinson

susannajon
11-07-2004, 08:26 AM
Preston J. Phillips
http://www.sofc.com/pjp.html

Walter F. Krengel, III
http://www.swedish.org/

Both docs are in Seattle. Good luck!!!

Susanna

cowprintrabbit
12-16-2004, 04:42 PM
OK, first consult is tomorrow! I'm nervous, but also relieved and a little excited... Seems like the first step in finally getting this taken care of after I've been treading water so long.

cowprintrabbit
12-16-2004, 04:44 PM
Originally posted by kathleensrose
Judy had surgery Freiday, 11/4. I told her I would think about
her, and I did. I spent from 8:00am to 1;30 pm having the
pulmonary test , exrays and CT scan. She was on my mind
quite a lot. I suppose she is in her hospital room now-drowsy and out of it. Heres hoping it was all a great success.
Kathleen Hutchinson

Has anyone heard from Judy yet?

cowprintrabbit
12-17-2004, 01:52 PM
Saw Dr. Wagner this morning; he says that from my Xrays, I should not be in as much pain as I am.

He is sending me for a bone scan, an MRI, and a lung function test; and will decide to where to go from those results. I think I'm finally going to break down and ask my PCP for something for the pain in the meantime, though. (I can't take Advil, Aleve, etc because of a bad stomach)

Is this a pretty normal first visit?

LindaRacine
12-17-2004, 02:41 PM
At your age, and your curve measurements, pain is a relatively unusual symptom, so I suspect that the doctor is simply trying to find why you have so much pain.

--Linda

SkiAnn
12-17-2004, 08:07 PM
Chritine,
I would just like to say how positive it will be to have your significant other by your side. It will most certainly make a difference. My husband wasn't able to go to my first appointments with me. Only made the last appointment with me to meet the surgeon just before my surgery (after everything was set to roll). He had instant respect for Dr. Dzioba, which is a good thing and we had covered D. Wopert's book together. But since the actual experience of the entire surgery, hospitalization period and into the 6th week of recovery, he doesn't miss ANY OF MY APPOINTMENTS. This really is a big deal, a MAJOR surgery and he admits he wasn't as prepared as he should have been. Thank goodness for me he is a QUICK LEARNER......:>) He is also occasionly thinking of different things he thinks I should share on the forum for the caregivers, so he really jumped in headfirst.
Good Luck in the following days to come.
Regards,
Gayle

blairf83
12-18-2004, 12:30 AM
I'd say that's a pretty standard first visit to a good, concerned surgeon when you present with a not so typical case...
In non-complicated/typical scoliosis cases, lots of times they don't do much more than an x-ray.
In my first appointments with the two surgeons I saw that I considered *good* surgeons, I was sent for MRI's, and then Bone Scans... I was only 20, but I'd had 35+ degrees of progression in about a 6 month period, taking my pretty much insignificant scoliosis up to being reasonably severe for the amount it unbalanced me, plus neurological symptoms, significant degree of pain (likely caused by degeneration of discs in my lumbar spine, we soon found out)...
I personally like a surgeon who tries to get the full picture straight off rather than putzing around, or just saying "under the knife you go"

cowprintrabbit
12-28-2004, 01:53 PM
Had bone scan Monday - I have my films because I have to hand carry them to Dr. Wagner, and boy are they funny-looking! They look like little Halloween skeletons or something :-)

Does anyone know what the dark areas mean? I have to wait for 2 other tests to come in before I can go see him, but I'm curious. My spine, face and pelvis are very very dark, and the rest of me is so faint you can hardly see it.

LindaRacine
12-28-2004, 02:10 PM
Hi...

The dark spots indicate increased blood flow to bone or increased activity of the cells in the bone.

--Linda

cowprintrabbit
12-28-2004, 03:55 PM
hmmm... is that usually good, bad, or indifferent? I HATE waiting:confused:

LindaRacine
12-28-2004, 04:05 PM
I think it just means that the area is inflammed, which allows one's doctor to find problem areas which need to be further investigated.

--Linda

cowprintrabbit
01-11-2005, 07:44 PM
Got lung function test, waiting for results. They had to measure me, and I have lost the final 1/4 inch I was hanging on to. I am now officially 5'6" That's 2 inches in 10 years :confused:

RachelCB77
01-12-2005, 04:07 PM
I too suffered from reflux, and while its "gone", there are some things I still cannot tolerate. One of them being pain killers. I have found however, that if you let your doctor know, they can prescribe a nice little pill to counteract nausea. You take one everytime you take a pain killer pill. It works wonders! There are several of them out there. Let me know if you need a short list. I have taken 2 so far (one kind after wisdom tooth extraction, another following a different surgery) and they worked like a charm!

cowprintrabbit
01-25-2005, 05:32 PM
Finally have all tests done - lungs normal (yay! maybe playing the flute all those years and learning to breathe from my diaphram did some good!)

Can't get in to see Wagner until 3/8, though. Aargh, waiting drives me nuts! I drove a clunker in high school and learned to fix it myself because waiting for the mechanic drove me insane (besides, I couldn't afford even the friend-of-my-father's rate he charged me) I wish I could get in there myself and fix it - what are the success rates for fusions with duct tape and popsicle stick instrumentation? :D

I've found that a Vicodin or two after work gives me enough relief to have the energy to ride the exercise bike and do chores around the house before bed. I even cooked an honest to goodness dinner last night! I think I'll try the Back Care Yoga tape I bought but never used tonight.

cowprintrabbit
02-14-2005, 06:51 PM
OK, yoga tape baaad idea... I could barely lift my right arm for two days afterward.

I can live w/o yoga; what's killing me is not being able to lift weights - how soon has anyone started post-surgery? I don't care if it was only 5lbs :-)

Oh, and my MRI showed 3 or 4 disks going bad and two places where my spinal cord is "slightly" compressed.

Theresa
02-15-2005, 09:58 PM
I am now 91/2 months postop and only using 2 pound weights for arm exercises. I use them about 3 times a week.
The next day I usually have some swelling and tightness in the shoulder blade area. My therapist also suggested using thera bands before weights.

blairf83
02-15-2005, 10:16 PM
I started with 5 lb weights as soon as I had that weight limit restriction lifted, and then 10 lb weights at around 6 months....

My PT had me using therabands as well.

cowprintrabbit
02-16-2005, 11:23 AM
That's something to look forward to - thanks :-)

cowprintrabbit
03-08-2005, 07:30 PM
Not sure whether to be releived or scared :-)

Dr. Wagner gave the go-ahead for surgery today. It looks like it will be this August - they don't schedule that far ahead; but if I do it earlier (May) I won't be able to dive in August in Jamaica (already paid for)

Plus, we are having our Kitchen remodeled in late April/early May and I don't think that would be a good recovery environment :-)

He's talking about fusing T3 to L3 - he makes it sound really long but I notice that a lot of you have that length or longer...