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View Full Version : Hi, I am new here...I'm am considering surgery and terrified



Rach84
03-28-2008, 01:59 PM
Hello, All!

I am new here and I am considering surgery and well, I am just plain terrified.
I am 23 years old with a 55 dergree curve. I am seeing a surgeon next week and I am wondering if anyone would mind sharing their advice with me. I know he is going to tell me I need surgery. Shots alone give me the creeps, so the thought of surgery has left me with a lot of anxiety. Thank you in advance to all who respond.

Susie*Bee
03-28-2008, 02:18 PM
Hey, Rach! Welcome to the forum! There's quite a few younger gals around your age that have just gone through surgeries, so I'm sure they'll have some wisdom to share with you. Yes, the surgery is scary to think about, but please try to get some strength from the fact that so many of us have gone through it and are living testimonials. If we can do it, you can too. :) It really helps to be able to share how you feel about it with people who truly understand what you're going through. Take care.

Singer
03-28-2008, 03:00 PM
We've all been where you are. I posted a message very similar to yours well over two years ago, and now I'm 9 months post-op and so glad to have it all behind me. It took me two years to gather up the courage to have the surgery.

Wait and see what the surgeon says, and be sure to get more than one opinion.

loves to skate
03-29-2008, 09:55 AM
Welcome Rach,
I too was terrified before my surgery,(who isn't) and I didn't find out about this forum until 2 weeks ago at 3 1/2 months post-op. I am 68 years old now and doing just great, not perfect yet but much better than I expected for my age. Since I didn't have the benefit of this forum before surgery or knew anyone who had this type of surgery, all I could do was pray for peace. I also bought Peggy Huddleston's CD's for relaxation and they helped a lot. The support on this forum is really wonderful. I wish you well.
Sally

Susie*Bee
03-29-2008, 10:56 AM
Rach-- I was just thinking about you some more... one thing that helps with the fear aspect is to know more about your condition, possible treatments, surgery, etc. There are two books that I read and re-read several times before my surgery-- and many of the folks on the forum have also. One is written by a guy who had scoliosis (he's a member of this forum) and went through the surgery... it is so informative and easy to read, and it's written from the patient's perspective. It is called Scoliosis Surgery: The Definitive Patient's Reference and the author is David Wolpert. You can order it through Amazon or the National Scoliosis Foundation. If you order it through NSF, a portion goes to them. That one I toted everywhere, even taking it with me to the hospital (as if I'd actually read it then!) The other book is written by a scoli surgeon--Michael Neuwirth, and is entitled The Scoliosis Sourcebook. This one goes into other options for treating scoli, but also deals with surgery.

You'll find that everyone is different, so scoliosis, its treatments, and surgeries are not a "one size fits all" thing as far as information goes, but you'll definitely get a really good picture from these books. If you choose just one, and think that surgery is indeed what you're facing, I would recommend the Wolpert one.

Best wishes as you discover more and more about your own journey. Again, keep us posted on your progress. :)

vndy
03-29-2008, 01:08 PM
I'm 23 and almost 4 months post op (I can't believe how fast the time has gone). You don't need to worry about fear of needles - you won't know any of the graphic stuff is happening because you'll already be knocked out. If you want a detailed description, I wrote a day-by-day post in December about my hospital stay (you can search for it, or go to Threads Started by Vndy if you click on my name). I was pretty stressed out for the months between making the decision to have surgery (August) and the surgery itself (December). Being on the "other side" is almost easier than the worry preceding surgery. Please feel free to PM me if you have any specific questions - I'll do my best to help!

Aussiemum
03-29-2008, 04:11 PM
Hey Rach,

My 13 year old would scream when having a splinter removed from her finger so obvioulsy going into surgery we were all petrified as to how she would cope with the pain. She breezed through and it shocked us all as to how well she did.

The stress and anxiety BEFORE the surgery is sometimes a LOT worse than the actual thing. You will be amazed at yourself and what you can endure once it's all behind you!!!!!

Good luck and welcome to the forum!

Cheers
Del

discombobulated
03-30-2008, 03:11 AM
Hi Rach,

I'm 21 - almost 9 yrs (!!) post-op from my approx. T3-L3 fusion & almost 7 yrs post-op from my L3-pelvic extension. It's looking like I'm heading for a revision of the latter, probably about June. Please don't be freaked out by that - mostly the revisions have been needed due to other medical problems affecting the fusion.

The wise people here are right that the waiting is a shocker - make sure you take care of yourself and try not to stress too much (I know, easier said than done!). If you do need the surgery, make sure you trust your surgeon, and ask him every & any question/query/fear/etc. that you can think of during upcoming appointments - for me at least, knowledge is one of the best remedies for pre-op nerves!

Anyways, sorry to ramble! But seeing as I've "been there, done that" & am back to do it again, I just wanted to add my name to the list of "PM me if you want to talk or ask questions"-people :-)

Best wishes to you - take care :-)

Mobee211
03-31-2008, 08:49 AM
Hi there, I am 28 and am meeting a surgeon on Friday. I have had surgery before (bowel resection in 2004). I was petrified before I had surgery..Honestly, you are asleep when everything is happening...and when you are awake you are heavily medicated and relaxed...so you have no idea what is really going on. I had some moments of panic before surgery but lookinbg back..it was the best thing I have ever done for myself. I am sure you will be fine!!

Rach84
03-31-2008, 03:16 PM
Thank you, everyone for answering!

I didn't think anyone would respond. It already comforts me to know people care and also are going through the same thoughts and emotions as me. Tomorrow is my first consultation with the surgeon, I'm a little nervous....I know what he is going to say. One more question, by chance, does anyone know of a good specialist in Florida?

Thank you.
Rachel :D [COLOR=Navy]

Mobee211
03-31-2008, 03:38 PM
Check out this thread: http://www.scoliosis.org/forum/forumdisplay.php?f=115

loves to skate
03-31-2008, 04:17 PM
Hi Rach,
I would recommend you go to www.srs.org. I copied this off of their website for you.
The Scoliosis Research Society (SRS) is an international society that was founded in 1966 with 35 members. It has gained recognition as one of the world's premier spine societies. The SRS has maintained a commitment to research and education in the field of spinal deformities. Strict membership criteria ensure that the individual Fellows support that commitment. Current membership includes over 1,000 of the world's leading spine surgeons, researchers, physician assistants and orthotists who are involved in research and treatment of spinal deformities.

Hope this helps.
Sally

SummerNC
04-01-2008, 09:20 AM
Rach,

I would love to stay in touch with you....sounds like we have alot in common.... 55 degrees and considering surgery....and scared to death.... :D
Funny bc our tag in our original posts were very similar!!

Where do you live? Sounds like you mentioned Florida? I am in NC

I would love to hear what your doc says...I am getting a few other opinions and going to another doc here in Chapel Hill on Friday....I think getting as much info and feeling GOOD about the doctor is important!!

Obviously I don't want to have it now....but I know it is definitly a possibility that I will need to knock it out! Are you gathering info and getting different opinions? Let me know how your consulation goes today! Where is your curve located?? Mine is 55 Thoracic...

you can PM me if you would like as well! Good luck at your appt!

Writer
04-02-2008, 02:44 AM
To Summer and Rachel --

Before you consent to surgery, you might investigate the Schroth physiotherapeutic method. In essence a trained physiotherapist would analyze the configuration of your scoliosis and teach you exercises that can halt progression, reduce or eliminate pain, and in many cases reduce the degree of abnormalities. In other threads on this forum, particularly in the Adults/Non-Surgical, you can read the impressions of people who've tried it. Just search on Schroth. If you ask an orthopedist about physical exercises he will probably tell you they don't work. But there are nearly 90 years of history behind this treatment, it is not unproven. The main Schroth clinic in Germany is still going strong with 200 patients at a time:

www.skoliose.com

There are several Schroth clinics in the US now. The closest to North Carolina or Florida would be Scoliosis Solutions in Rockville, Maryland. They work with Luke Stikeleather, a very experienced orthotist who's trained to make braces for Schroth patients.

http://www.scoliosissolutions.org/index.html

Best of luck to both of you whatever you do!

loves to skate
04-03-2008, 10:49 AM
Dear Writer,
Is there scientific evidence to support this? I went to a Chiropractor for non surgical spinal decompression at a cost to me of over $5,000.00. After the treatments I did several exercises every day for over a year. Did it work?
I had minimal relief from my pain for a few months but it didn't last. So be very careful about alternative treatments even when there are glowing testimonies.
Sally

CHRIS WBS
04-03-2008, 11:28 AM
Iíd like to see some scientific evidence too. So much so, that if you can show me substantiation of long-term studies proving that curve progression was halted and in many cases degree of deformities reduced through exercises, I will cancel my upcoming surgery and visit a Schroth clinic.

Chris

Writer
04-18-2008, 06:03 PM
Oops, my apologies -- I just now returned to this thread and noticed the questions.

I agree about the chiropractors. I was treated by several. Nice people, not expensive ($45/visit), but a waste of time aside from short-term pain relief. I have never seen any solid evidence that chiropractic can work for scoliosis.

In contrast, there is a quite a bit of scientific evidence for the Schroth method. A Turkish study (50 patients, 2005) over a 1-year period recorded average Cobb angle decrease from 26 to 18 degrees, and increase in vital capacity (lungs) from 2800 to 3200 ml (about a pint).

http://www.ncbi.nlm.nih.gov/pubmed/16155663?ordinalpos=25&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum

A 1992 study of 107 patients at the Bad Sobernheim clinic recorded average Cobb reduction from 43 to 39 degrees. Half were unchanged, a couple got worse. Over 40% got at least 5 degrees better, and some of them must have gotten much better than that in order to increase the whole group's improvement average as much as they did. The Turkish study did better, probably because small curves are easier to correct than larger ones (26 vs 43 degrees).

http://www.ncbi.nlm.nih.gov/pubmed/1308886?ordinalpos=42&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum

Here's another study by Weiss (the director of the Sobernheim clinic) of 181 patients over a longer period.

http://www.ncbi.nlm.nih.gov/pubmed/9689236?ordinalpos=38&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum

I have offprints or photocopies of several of Weiss's studies including the 1992 one above, both in English and German. PM me if you'd like a copy.

Search at PubMed on "schroth scoliosis" for other studies -- there are quite a few.

Also, seeing is believing. Christa Lehnert-Schroth's book on scoliosis treatment has lots of pictures of cases she treated, some very dramatic. Here's one of a 24-year-old woman whose left side was completely caved in and atrophied at the start. The photos depict her Before at left, then After 3 inpatient treatment courses of three months each, and finally After the fourth course. Still not cured, obviously, but improved.

http://www.glowfoto.com/static_image/18-154237L/9476/jpg/04/2008/img4/glowfoto

Schroth is not a miracle cure, and it won't work for people who cannot commit to about a half hour a day of exercises they learn in training. I've looked around for ten years and have not found any complete system of techniques that collectively make as much sense as this method. It will surely be modified and supplemented in the future by creative practitioners, but right now it seems to be the most effective conservative program for scoliosis.

JamieR
04-19-2008, 01:02 PM
Hey Rach! Just wanted to let you know that you are in the right place to get good advice and to hear other's experiences. I am close to your age and I just had my surgery about 3 1/2 weeks ago. I won't lie, it was very tough, probably the toughest thing I have been through, but guess what, I am already making such a great recovery! The first three weeks were the toughest for me but out of nowhere, it seems like in the last couple of days, I have been taking leaps and bounds and really doing a lot more on my own. I still have some pain, but it is so much better. My point, if we can do it, so can you. You are young and hopefully will have a speady recovery. Just listen to your doctor and do exactly what he tells you. Keep us posted on how your appointment goes.

myachingback
04-20-2008, 11:30 AM
You found the right place!
Those folks gave you a lot of good advice. I hate to admit it (I'm a guy!) but I was scared too! The thing that helped me most was siting down with the right doctor. Plus getting things ready for the main event helps me by occupying my mind. Last but not least all the great folks on this forum that really do care. I'm pretty new here and just thought it would be good if we had a How To Prepare heading or maybe Getting Yourself And Your House Ready. Then newbies like us wouldn't bug the experienced folks as much! BUT I know they REALLY don't mind!
Best To You!
Chris

Rach84
04-22-2008, 01:38 PM
Thanks for responding Chris. You are right, there are a lot of great people here and there is a lot of helpful information. I think your thread idea on How to Prepare for Surgery is great! Are you scheduled for surgery?

-Rachel-

Rach84
04-22-2008, 01:56 PM
Hey, Jamie!

Thank you for sharing with me. I canít believe your Dr. got your curve down to 15 degrees! Congrats!
I am glad that you are making a speedy recovery. If you donít mind me asking, what was the hardest part for you? Something I keep thinking about and granted I know itís different from person to person, but can you bend after surgery? I have a lot of questions that I didnít think to ask my doctor. When I go for my follow up in 6 months I will be sure to have all my questions down on paper.

Well, please keep me posted on your recovery. I hope the very best for you.

-Rachel-