~New Member

[Danihenson]

Hi ~
My name is Dani and I was recently told I have scoliosis.

The parts with the * is my personal thoughts on situation at the time.

Many of you have stories of how you came to find out about your scoliosis.... I have one aswell.. I hope not to bore you, but I would love to tells someone of my confusion.

About three years ago I kept getting this persistant "Stinging" pain where my back meets my bottom.. rump? booty? (Sorry) It would leave and come back, leave and come back... One day it came back and stayed.. I began vomiting and getting very hot and sweaty. So, I decided it was time to go to doctor.

Now this is where the confusion starts.

"Its just a muscles spasim (sp? sorry for spelling errors), here take this, get some rest. You will be fine in couple of days"
"Are you sure? This hurts so badly, I really wouldnt come to bother you over a muscles spasim"
"Muscle spasims can be very painfull."


*then doc and husband laff about how busy I am.. all my projects I had started at the time*

Now after a few months... I mean gosh... the size of area where the "Stinging" is getting larger. And again I am getting very over heated and sick to my stomach with the waves of "Stinging" pain. I think gosh.. do I go back to doc?? Well I had no choice. SO there I go again.

"It is probably just a muscle spasim or group of muscles that needs extra attention. Down the corridor get an Xray done. And here are referrals to Physical Therapy and Chiropractor."

*Now, not that I mean to complain.. But again. There I was being treated in an odd way... Never the less Physical Therapy and Chriopractor is getting some where so for the next year and half....*

Chiropratic Terapy to the tune of twice weekly. Physical Therapy one a week.

One day I ask "Seems like a looong time to have back pain. Am I doing something wrong?"
Probably just a pinched nerve. You are doing just fine, reguardless you should continue with therapy as it helps with that too."


*now at this point im getting down right sick and tired of the slowly ascenting ladder of pain.. not only are areas getting bigger, but also the duration is lasting months on end!*

"It keep comming back. Is there anything more I can do?"
"... (Almost absent minded) ... You slouch, dont slouch. Bad posture or even a broken toe can cause back pain."

**POSTURE?!?!?! Had just enough of this, and decide that gosh darnit all there has to be a test and SOMETHING with SOmething on it that i can see !!!!**

So, I make an appointment to go back to my general praticioner.
"I dont mean to be rude Dr. *****, but this has gone far enough. I need a test a something that can see with my own eyes. SOMETHING that you could see and say "Oh why yes Mrs. Henson, i can see right here" and tell me. Give me something to look at. Im walking up a ladder that thou you cant tell in the day after day.. in the week after week you can tell! It is slowly but surly getting worse and i WANT MY MOBILITY BACK!"

And I cry.. like a liil girl.

So he orders another X ray.

I get calls at home that very same night.
"Mrs. Henson can you come in tomorrow at 5pm spine center? Also have ordered some labs run, so if you could stop by for blood work that would be great."


So, there I am. Here is the guy, spine specialist... First thought was gosh hes young to be doctor in speciality feild.. next thing I think is what on earth is this guy tlaking about? Scoliosis? That is childs disease... forms as children and so slow their bodies conform to it (Please dont bash here... i just didnt know any better).. and what the heck is he talking about "twisting" whats that supposed to mean. All they did was x Ray, im sure if I had scoliosis then SOMEONE would have said SOMETHING 2.5yrs ago.. right?

now here is the odd part.. I get sent all over for all sorts of tests. Weird things like hearing.. which if they asked i could have told them yea ive lost some hearing last year. Again thou, same brick wall of NO COMMUNICATION with me. Thing called MRI. That was kinda cool, those machieness take pictures in a really neat way... Even started seeing a pain psychologist and we begin working on Bio Feedback. 6.6 BPM for pain spikes.

So here we go all the tests he wanted are done and time I hear "news". Or game plann... by this time, ill admit im pretty fed up as I have done everything that has been asked of me for almost 3yrs.

"You dont have arthritis, though you have some degeneration of this area here. It is arthritic."
(okay, now that I understand.. still at the time I was very confused)
"Here you have some twisting. Here to here you have a curvature of the spine."

"I would like to begin a series of diagnostic steroid injections."

***W*F???

"What is causing it?"
"We may never know. But, it is not arthritis."
"Am I doing soemthing wrong?"
"No, you ve done all you can. I would like to scedual for procedure to do your facet joints first. Then we will work on the rest. It should stop or greatly reduce the pain you feel."
"Should I change my diet? More calcium intake? Im sure if I had scoliosis, someone would have said something by now?"
"Should have..(he trails off, begins talking to my husband)"

**Think at some point my husband took over conversation because.. well, i just cried. I don’t have any family. And now that I have finally gotten my hearts desire , a family of my own... just so very frustraited I want so much to love and care for their every need. It so important to me to love them and show them love. Silly, but my need none the less. My Dream.

Well, I did request copy of my previous xray from before and THERE it is! Right there clear as crystal! W*F???the report?
"may be positional or related to scoliosis"
Same curve slightly less, and if I may say so the spine itself, though cirved is much more healthy without the .. weird twisting and "Step ladder" looking bones.

So I start doing injections... Gosh, those just really bite. Not easy at all.
Second round of injections, much larger area and both hipps aswell...

month later "Flare up" "Continuation of symptoms?" lord only knows... but back is inflammed a lot... don’t get me started on my hipps, it woulld just be super cool if I could ignore the new area stinging as we speak.

Then I find NSF forum. And here I write to you folks.
I see many of you know the degree of curve? I don’t know that, though I do have copies of xrays and an MRI (No dye). Many of you knew a long time ago or when you were children... Some of you describe symptoms similar to mine... Though I don’t see mention of muscle weakness in the limbs? Fatigue? Nausa and sweating when the waves of pain are too much?
I was so very active just 3yrs ago. I don’t think I complain to the specialist.... Though I feel like he isnt telling me something. I feel like I am being decieved again. I was going to go and request my latest records, from just these last few months... but I get a feeling of dread. Like maybe I don’t want to know.
I hate that they make me feel like im complaining or a hypocondract (how ever spelled?)
I went through natural child birth!! By God, im a tuff one. And oh my goodness, it is hard to see through the fog of pain.

And here I sit. reaching out to folks ive never met on the intrenet in hopes of a connction of some kind. I know I need to go back to the spine specilist (why does he have to be a man, and young to boot?) and tell him the 2nd set isnt really working. Though the injections in facets worked like a charm... just the rest didn’t.

Well... All I have to say really.. Thanks for listening or "reading" my rants.

I could really use information. Accurate information. Not some fly by night AD for a miracle cure. and not information put in a formal fashion that only someone with 12yrs doctorate can understand. Any information I can read and understand would be most welcome.

Thanks,
Dani
27yr old mother of Two Children

[amae28]

Dani- Welcome to NSF! Hopefully you will find the answers that you are looking for here. I am sorry you have had such a difficult time with pain and getting a diagnosis.
*First off, make sure the doctor you are seeing is an orthopaedic surgeon with a specialization in scoliosis. There is a list somewhere (if someone could post it) of doctors who have had this special residency/training.
*The reason I am saying this is that your doctor should have measured your curves and explained to you what they mean/ relatively how bad they are and such. I am guess that since you weren't recommended surgery that your curves are mild? ...but I could be wrong. Surgery is usually recommended over the 40-50 degree range, especially with progression and pain.
*I have had issues with pain as well, but I have stopped getting injections. In the past I have gotten 8? trigger point injections near my right shoulder, the first of which resulted in a collapsed lung because it was not done under flouroscopy (type of x-ray) and my lung apparantly is further back than normal in my chest.
*I have been advised to stay away from chiropractors as all the popping can contribute to wearing down of your joints, etc.
*Some others on here might be able to help you more! Good luck

[Susie*Bee]

Dani--I'd also like to welcome you to the forum. You'll find there are people who have all kinds of different problems and diagnoses here, so you might have to be a little patient to hear from someone who has had similar pains and problems as you have had. One thing I'd like to stress, along with Abbie, is the need for getting a good scoliosis specialist. And also that it is your right, as a patient, to have things explained to you so that you can understand. Don't be afraid to stand up for yourself and say "hey, I want to know what's going on with me!" So be sure and tell your doctor that you want to understand. I'm afraid some think that patients who don't ask questions don't really want to know or something. It's always good to write down questions before you go, and let them know you have a list, then go through the questions and scribble down some reminders about his/her answers. If the doctor doesn't want to spend the time with you to do that, then maybe it's time to find another doctor.There are also some educational spine/scoliosis websites that are for "regular" people, and they are very helpful for getting the picture about what's going on with your body.

I was 27 too when I found out I had scoliosis, but waited another 27 years till I did anything about it. So mine was not the painful ordeal you're going through. Each one of us has our own special story, and each our own path, but they all enter-twine to some extent. It sounds like you've had a really rough 3 years. Hopefully, now that you have a diagnosis and can seek help from a scoli specialist, you'll find ways to relieve the pain and understand what you're dealing with. Educating yourself about scoliosis is the best tool you can have. Start with the internet-- and then see if you can buy a good book or two, depending on your needs. You can always do a google search on scoliosis to find info. myachingback had posted a link the other day with easy to understand info. And again, ask your doctor for more information-- both about your unique case and about scoliosis in general.

I'm not at home today, so I'll try to write more tomorrow, when it's easier, unless lots of people post.

This is a good place to come to to find support and help and understanding. We're all in this in some way or other-- and are meeting the challenges scoli brings our way. It helps to know there are so many others who share the same concerns and needs-- and emotions too-- and because of that, we can help each other in ways no one else can.

Best wishes in your scoliosis journey! We're all doing it too!

[Sharshe]

WELCOME! You will find lots of friends here. It seems many have gone through similar ordeals as far as Dr.s are concerned, either didn't recognize the problem or didn't care to deal with it (you'll find a lot on here that were told its not painful! what a joke). But as Abbie said make sure you get an doctor that specializes in adult scoliosis, you don't want just a reg. old spine guy(not that there aren't good ones, just that this is a whole different ball game then plain back pain). Good luck.
Sharon

[rtremb]

Welcome to the forum. Sorry to hear you have gone through such an ordeal so far. I hope you find a solution to your pain soon.

I agree with the others who answered your post that you need to be seeing an experienced scoliosis specialist. I think getting a second opinion or even a third opinion would be a really good idea especially since so far the doctor you are seeing hasn't solved your problems and your problems have been going on for so long.

If you are finding that the doctors are talking to your husband instead of you and you'd prefer they talk directly to you it might be a good idea to go by yourself - hard as this is at least you will know that they have to talk to you. This has happened to me in the past so I usually go to doctor's appointments for myself alone now.

I agree that having a list of prepared questions always helps since our minds can tend to go blank when we are in front of the doctor and it is hard to remember all the things we wanted to ask.

Did you obtain a copy of the written MRI report? This would be helpful for you to have then you can google the medical terms used in the report and learn more about your condition. I routinely do this now with my children's MRI reports. You could also ask for a copy of your x-rays. It would be usual for you to be told the size of your curve(s) and where on your spine the curve(s) are.

Have you tried yoga for pain relief? This works for some people.

It is possible that the pain you are experiencing is related to the sciatic nerve - have any of the doctors checked this? I have been reading a lot about this lately because my son has some tumours on his sciatic nerve so I have become familiar with the symptoms to look out for and one is pain in the buttock area. Just a suggestion.

Hoping you get some answers and good help from the forum and from your doctors. Please don't hesitate to ask questions on the forum - I have found there is usually someone who can answer most questions that are asked.

Good luck.
Ruth in Ottawa

[Danihenson]

Oh my gosh I nearly cried. You are all so very caring and understanding in your responses. Gosh, thank you. Thank you so very much for.. Just being here.
Scoliosis specialist? My husband and i are reading all of your replies. I hope it isnt rude to let him read. We are looking up many of the things all of you have mentioned. Yoga thou, weird should be mentioned. We are putting aside cash for that right now. Few weeks ago i looked up prices and studios? in my area. First thing I noticed is if you are comming to them with back pain they A. want inital consultation for "Assesment"
B. Ask slight more money per month vs. reg yoga
C. Sessions last just a touch longer.
So, Im definatly excited for that to finally start.

I have copies of all the MRI and Xrays. Though i will have to ask about the Degree of curve? It isnt S shaped like many of you. Just large C shape. all of lumbar region and up to bottom of rib cage throatic, gosh i cant spell these terms to save my life... thou the top part doesnt hurt. And speaking of hurt. Im trying to find answers and not use any pain medicaton. So if ive mentioned pain alot it is because, well... I had to reach out for differant tools for pain management.. Like electronic muscle stimulators, wet heat, meditation, bio feedback, physical therapy, chiropratic therapy. right now thou my pain psychologist has become the most important part of pain management .. for me atleast. I dont have family, just me so I have to be on the ball. Got 2 bumblebees that need mommy.

Thank you all so much for your responses. We are looking up specialists and check what our new insurance covers. I did go back to my general pratictioner after the spine specialist and I said "He says he doesnt know, and I dont think he is looking hard enough for a cause."
"Well I can give you a referral to ortho- somethin (gosh sorry I just remember thinking isnt ortho "Teeth"?)"
then he said "Though his solution will be from more of a surgical stand point."

**whoa...

So... I decided to start the injections with spine specialist and atleast "Try". Like i said earlier the persistant "Stinging" (which was like insult to injury)is gone. But.. the rest isnt. Ive been seeing the spine specialist since February of this year.

I do know sciatic pain, and i know muscle spasims. I also know first hand about muscles that "tremble" for hours on end just to have said muscle group go to mush for two days. Weird legg issues are frustraiting. All of which are "Livable". my most pressing concerns are the spread of the hot, tender, inflammed muscles and the "pressure" i feel from under the "skin". The fatigue is just plain buggin me to death, ive just got so much to do.

Anh here I am rambling on and on. Like I said im sorry I talk about pain so much.

I truly appreciate all of your helpful tips, suggestions. All of which are increadilby useful!!! How odd thou... that after reaching out for help for so long.. I find the most help from people ive never met. Thank you. Gosh, just thank you so very much.

Dani

[trulyaries]

Just a comment ...

... about the doc talking to your husband instead of you. Once I was in a store with a boyfriend looking at tile for my remodeling project. I would ask the salesMAN a question and he would give the answer to my friend. After this happened a few times, my dear boyfriend said "Look, it's her house and her money. Talk to her, please." I think your husband would be justified in politely saying the same thing to your doctor: "It's her back and her pain. Talk to her."

[jillw]

If you go to the website for the Scoliosis Research Society (http://srs.org/find/) there is a tab called "find a specialist" which lists members of the Scoliosis Research Society. In order to be a member, the doctor has to have at least 20% of the practice devoted to spinal deformities. It's a good place to start - I don't know where you are located, but even if you have to travel a little for a consult, it might be worth it. Even if you don't use a particular doctor for treatment, you can learn something that can help you or about other options from second and third opinions. Good Luck!

[Writer]

I'm so sorry to hear about the general incompetence in diagnosing your condition and pain. Abnormal spinal curvature is usually not a lurking mystery, it's clear in the X-rays and usually even if you just bend over.

An S-curve is, as you say, the most common, generally in 3 curves. But there are scolioses with 1, 2, 4, 5 and even 6 curves mentioned in Christa Lehnert-Schroth's book on physiotherapy for scoliosis. It sounds like you might have one or two, which would be quite unusual.

Rtremb suggested getting a second or third opinion, which I think would be advisable. However do be wary of the orthopedists (including SRS), since as your GP has already cautioned, they think surgery. They will tell you that physiotherapic exercise won't do any good, though there is a great deal of published evidence for its efficacy that they are ignoring.

If your pain is indeed scoliosis-related, which sounds like it may be, then drugs and injections should not be necessary. Proper physiotherapy will almost certainly take care of it.

Search on this website for "Schroth", which is a physiotherapy method focusing on treating scoliosis and related conditions. A number of NSF forum members have been helped by Schroth therapists. Your PT could help you a great deal more if he/she had some knowledge of this system. Unfortunately I don't think there are any Schroth-trained PTs in New Mexico; the closest right now would be California.

[dsal]

Yoga

Dani, so sorry to hear about your ordeal.

You mentioned that you are saving up money to attend a yoga class. I would recommend getting the Yoga for Scoliosis dvd and workbook. I've used that, and I really like it!

http://www.ebmyoga.com/index.htm

I bought the dvd and book set. If finances dictate that you make a choice between the two, I'd recommend the dvd. The book pretty much shows what's on the dvd. A few extra poses are included along with a few extra explanations, but I think the dvd is better.

hth,
dsal

[Danihenson]

First off you guys are Awesome!

On to the cool stuff!

Our insurance changed, like out of the blue! bad news is they do not recoganize Pain Psychology. If I think about that too long Ill either cry or get really upset and write nasty letters... BUT! So get this! They have a Scoliosis Specialist! Right here! well.. not right here about an hours drive away. Got number and new insurance card in hand.. just gotta get brave an make appointment! I called the new Insurance Co. and they said I dont need a referral either. My husband HR and new Insurance broker have promised me repeatedly that if i like I can continue to see my Spine Specialist too for as long as I like or not atall. Up to me. I see him next on the 3rd. (just found out I dont see HIM but a certified nurse praticioner. Not sure what that is but i really hope he/she is prepared for all my questions because im ready to get proactive! I have knowladge in hand this time.)

I just LOVE all the links all of you sent! There was alot of information about adult onset scoliosis and all the possible reasons... I am still reeling from a week of gaining a whole new perspective on the world around me. Very intrested in the studys on specific genes being present or not and their relation to some types of scoliosis. And types... wow! There are so many differant reasons why the human spine curves!! Whoa! Please, continue to spend any/all information my way. Learning is helping me alot right now!

Yoga is much more popular than I thought for my small town! Cash but no spots open in classes. So thank you, for posting the link to order video. Sounds like best option til I can get a seat.

I finally bit the bullet and confessed to my friends. Just wrote an update on how i feel to my mother in law... then got brave and cover copied it to my friends other family members. I wish i could explain why i feel tiress to them better. Wish I could have just said something , instead of "Sorry, i'm kinda tired tonight. Ill have to cancel." I feel bad that I kept so many folks int eh dark, but lets be honest, im kinda in the dark myself. And i just didnt want to worry anyone. Now just everyone seems quiet around me.

On a side note I'm slowly but surly redecorating my kitchen. Im no so sure why I felt I really needed to do this... and it most certianly is going slowly.. But, it makes me feel good. In any case I went with light sage, golden yellow, white and maple. I get over whelmed... I just go work on some Facet (no pun intended ) of my re decorating project.

Thats really all I have to wrote about. :O) Im soaking up everything i can on the subject so keep the info commin!

Thanks so very much!

dani

[Susie*Bee]

Good to hear from you, Dani! It's wonderful that you can find an outlet for your creativity by redecorating your kitchen! That sounds like a lot of fun, especially if you're pacing yourself so you don't overdo... And the colors sound gorgeous!

I really think the best thing you can do for yourself right now is to continue to learn more and more about scoliosis and what it will mean in your life. There are some good books that you can buy-- and I'll recommend the ones I read. (And read and read and read...) Scoliosis Surgery: the Definitive Patient's Reference by David K. Wolpert is really a "must read" (if possible) for people planning surgery. It explains so much and has a lot of helpful information, things to plan and prepare, etc. It is written by a man who had scoliosis surgery as an adult. You need to remember that "one size does NOT fit all" in scoliosis surgeries, so the one drawback I found with the book is that it does not deal as much with some of the bigger fusions that some of us had-- or the longer time for "older" people's recoveries, weaning off pain meds, etc. But then, I don't think any book could deal with everything since we're all so different... I probably read it at least 6 times before my surgery and found it to be both fascinating (as only a scoli could!!!) and extremely helpful.

The other book is The Scoliosis Sourcebook and is written by a scoli specialist, Michael Neuwirth, M.D. and Kevin Osborn. It deals with scoliosis in general and the different approaches to treatment that are possible. It is also very informative. Most of his surgical cases are also some of the less extreme fusions, and mostly younger adults. (Or at least that's how it seemed to me....) But then they're probably the most common scoli fusion surgeries. Again, it's a good book.

If you "google" various topics related to scoliosis, you'll find lots of info. Just be careful that you find legitmate medical sites for your reading... I have read info in a few that is OLD and OUTDATED. Here is a wonderful source of many, many links and information-- I think it's Linda Racine's compilation, but I can't find her name on this link right now, so I'm not sure... If only I had found this link prior to my surgery, it would have saved me countless (and I mean that!) of hours and hours doing my searching. Of course, I didn't even find this forum till 5 months post-op.

http://www.scoliosislinks.com/

I am SO glad to hear that you are telling your friends and famiy about your condition. Otherwise they think we are being wimps or anti-social. It's important that you continue to share with them how you're doing. Even so, I don't think non-scoli people ever really "get" the picture (except maybe immediate family). And that's where the forum is a true God-send. All of us DO understand. So this is the place to come when you need to unburden yourself and cry or vent or celebrate... whatever's happening in your life. There will be, at the very least, someone here who understands, and usually quite a few who respond.

Best wishes with the new insurance-- and with seeing the specialist or his CNP. Let us know what happens! Take care... Susie