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spincon58
05-15-2004, 03:15 PM
OK,

Since my discovery of my curve progressing and the talk of surgery my family has gotten involved......this was noted in other postings...but as of today my sister in law spoke to her PT(physcial therapist) and she told her that scoliosis can be stopped by therapy....also the pain can be reduced..

.I took the advice of my surgeon and the advice of physcians who are not surgeons and all said i need the surgery...

so I understand this, but i can see my sisterinlaw blabbing to everyone that i didn't try everything ; meaning her doctor; and that i'm rushing into unnessary surgery....blah blah blah...i wish everyone would lay off....it's hard enough without all this...

nora
05-15-2004, 04:14 PM
Connie,
I am an occupational therapist and I know a fair amount about spine health from both personal and professional experience. I have to disagree with your sister-in-law. PT can certainly reduce scoliosis-related pain but, to my knowledge, it cannot stop curve progression in a 45 year-old. Also, I've read your other posts where you've described your level of pain. It sounds like this pain has literally taken over your life. This is your personal decision, of course - but I believe you are making a good one. Best of luck.
Nora

LindaRacine
05-15-2004, 07:10 PM
An adult who spends a great deal of time in muscle conditioning can sometimes train their muscles to reduce their curve a small amount. In structural scoliosis (which is almost certainly what most of us have), the vertebrae and discs become wedge shaped. No amount of exercise will change that. Check out my website here:

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

for more detail.

OneofFive1
05-15-2004, 07:20 PM
spincon,
That would get very anoying, especially if you don't mind surgery.

I hope you get a speedy recovery from ur surgery!

spincon58
05-15-2004, 08:45 PM
LINDA .,
THAT WAS A GREAT ARTICLE . MY HUSBAND READ IT AND SO HE FULLY UNDERSTANDS THE SHAPE OF THE VERTBRAS. I WILL HAVE OTHER FAMILY MEMBERS READ IT IF THEY HAVE ANY DOUBTS.....IT WAS ALSO NEW INFORMATION FOR ME.
THANKS AGAIN FOR THE VERY VALUABLE INFO.

momoflacrosse
05-15-2004, 09:00 PM
Hi again Connie:
I am sure you are getting sick of my comments but boy would I love to get your family together in a room and talk to them. If you are anything like me and it sounds as if you are - this pain didn't start yesterday - we have been living wiht it for a long long time and it is getting worse as time goes by. I would also imagine that like the rest of us you have tried most of the alternatives including therapy. Good lord who wouldn't try non invasive stuff before surgery. But it comes to a time where we have tried everything and you have even gotten 3 opinions and they are still on your case. I suggest that you get them all together and tell them it is your bosy and your pain and YOUR DECISION and to butt out cause all they are doing is making your life harder. This surgery is not an easy decision to make but when you suffer 24/7 and you are still relatively young then there has to come a time when the options get smaller and you have to bite the bullet so to speak. My boys(18 and 19) have already told me that they will support any thing I decide on and my sister who is an OR nurse goes with me to all my appointments and my Mom who has spinal stsnosis is with me too so tell your family that you have made up your mind and that intead of trying to second guess the specialists that it would be a big big help if they would just support your decison and be there for you when you need them. Sorry I kind of got going there but I really know where you are coming from and I wish you the best of success and I do hope that your family gets with the program for your sake. Keep in touch as I am right behind you for surgery - I hope

Nancy

MaryK
05-15-2004, 10:00 PM
Connie,
I'm going to put on my "Dear Abby Hat" and suggest that you thank them for their efforts but you have decided on the surgery. You could add in that their efforts to help is touching. That way those suggesting other therapies know you appreiciate thier thoughts, but your mind is made up. They really are just afraid of surgery. Not to mention they don't understand scoliosis. Try not to take it all to heart. Sometimes well meaning family members don't realize they are just causing more pain. (Dear Abby hat's been taken off :D )

nora
05-15-2004, 10:06 PM
Hi Connie,

Ask your family the following question:

If you were diagnosed with coronary artery blockage and were advised to have major bypass surgery - surgery which will prevent cardiac events which could cause severe pain, disability and decreased quality of life - would you do it?

Most people would respond "yes". Your situation is no different.

There's so much ignorance on this topic. Most people have heard of this procedure only in adolescents. I asked a GP for a spine surgeon referral a few years back and he actually told me I was crazy to consider this "at my age". Needless to say, I never went back to him.

Again, I wish you luck and look forward to hearing about your new straight spine. In a strange way, I envy you. Your decision is made and you will have all this crap over with soon. I know that sounds crazy but those of us who've been struggling with the "big decision" for years will understand.
Nora

spincon58
05-16-2004, 03:50 PM
Nancy,Nora,Mary and Linda..

Thank you for all the support on handling family issues.....I know they all want to help, but all it does is question my decision, and that makes it harder on me...

Today is Sunday and the family went for a ride...and automaticly when I sit in a car I lift my leg up and support it on the seat...this acually pushes the lower spine into the seat and releases strain on the back....my husbands kept telling me put your foot down off the leather(expensive car) and I don't even relize that I do this automaticly b/c of pain...how we compensate..

another moment...we went to check out the waves..we live a couple blocks from the beach...and we found a handicap spot and
next to that spot there was a very elderly man sitting in his car...as I opened up the door I found it hard to lift myself up and stand....I did than I couldn't continue to stand so I got back in the car and the senior said why are U in the car U should go for a walk on the boardwalk its such a nice day......I said I can't I have back pain..

OK I know I'm rabbling on but the point is that we live with so much pain that we compensate everyday activies that are so normal...like sitting straight in a car or walking on a beautiful day....so many things I had to stop doing, the most hurtful was a weekend we took the kids skiing...I never had such an urge in my heart to do something...I wanted to ski with the kids and watch them as they went down the slops ...but i couldn't....or shopping in a store Anni Sez and after 15 min I found myself in the corner of the store sitting down by the window ledge......

We all have pain...it's nice to get my feelings out and tell people who care and have the same pain...
I wish we all find the strengh to make the right descisioand get thru everyday activies with as little pain as possible...I'm grateful to have found so many wonderful caring people on this forum...I'll be here for anybody who needs me...And I'll be able to step by step tell everyone the accounts leading up to and after surgery (if everyone wants to know)...

All smiles now:)

cheryllee
05-17-2004, 10:01 AM
I wish you the best. I am 7 weeks post-op and doing well. I am 54 years old with a 78 degree lumbar and 54 thorasic which has been corrected to less than 28 degrees. Although I wasn't in a great deal of pain before surgery, I had other health issues. I have osteoporosis which hasn't responded well to drug therapy. I now inject forteo once a day to stop the bone loss. Every woman over 45 should have a bone density test which is just a specialized xray. Next I was diagnosed with pulmonary hyptertension, a progressive diseased with no cure. My cardiologist was at a loss to explain why this had developed. Most cases are found in women in the 20-30 age range. When I went for my 3rd opinion regarding surgery, the surgeon stated that the plumonary hyptertension was caused by the scoliosis. Although this is rare, he had seen it before. It was this surgeon who did my surgery. Although it would be great if the surgery cured this problem, I will be happy if the prgression slows down or stops. I can already breathe better and my rib cage now looks normal. Finally, I would have rather had this surgery 10 years ago. The younger, the better.

Irene
05-17-2004, 11:54 AM
Dear Connie,

("Connie"... I love that name. That's my Mother's name...)
I just wanted to thank you for sharing so much of what you've been going through. I know you have helped many people already. You made me remember all the "squatting" I've done throughout my life! (...especially all those LONG lines in Disneyworld!) ~ I also want you to know that my calendar is marked for June 28, 2004... You will be on my mind all day and I will be praying.
God Bless You.
Irene
Age 58

spincon58
05-17-2004, 12:59 PM
Irene and Cheryl,

We need to stay together and share our happy and sad moments.I lived with scolosis my entire life..I lived with the pain in silence because thats what I was doing my entire life...we all did the same..but now everyday I look forward opening up my PC and checking out this forum...making new friends that are going thru the same bunch of problems as me.....

We are all around the same age I'm 45..and I have developed osteoprosis in the lumbar area....my surgeon doesn't seem to be bothered by this...i sure am...but he knows better...what kind of shots are given.?..Fosomax is not good for my ulcers and the nose spray i hate....are the shots better?

Irene thanks for liking my name...I didn't like it growing up b/c it was not so popular ...now no one is being named that....i feel special anyway!!PS...Get a special handicap pass and you can cut all the lines by going thru the exit...it saved my life the last time i went to disney with the kids...

Cheryl, Keep us on your progress especially your plumonary problems , it would be great if that got cured...tell us what U could and cannot do at each stage of recovery...it's important to all of us....running to the hemotogist as i must get infused with iron before surgery....bye.

lily
05-17-2004, 03:59 PM
Connie,

I am following your case with enthusiasm and I am learning a lot from you and the others that responded to you. You see, I am already 56 years old and it's just now that I am actively pursuing treatment even though I had scoliosis since adolescence. I have an appointment with the spine specialist on May 24 and go from there. Please continue to post your experience and know that you are helping people like me.

Lily

spincon58
05-17-2004, 04:16 PM
Lily,

Thank you...I guess my message to all of us is....Keep posting everything ...your feeling ....your worries....your process..before surgery or after...your doctor appoinment...everything....

OK...who ever is having surgery ...take a blood test for your iron count and your stored iron in your bone marrow which is called FERRETIN level...

my is low...so now I will have an iron infused in my blood stream before surgery to help in my recovery with surgery. If your ferretin
levels are low see a hemotogist....

Also my surgeon said I do not need a neurogogist exam....OK what if my scoliosis is compressing vertbra nerves that the doctor is not fusing...i will continue to have pain even after surgery...so big deal get a clearence from them....

go to a dermatogist and check your back for moles or any other skin condition...

Go to the dentist...stress always promotes root canel LOL

Also get opinions from doctors who are not surgeons...it will ease your decisions

My medical insurence has a copay of 15 so I use it up.....

cheryllee
05-18-2004, 10:38 AM
It was the osteoporis that really concerned my primary doctor and she insisted that I see a specialist. She had a patient with a mild case of scoliosis that fractured her back from the osteoporis. I was totally shocked to learn that my curve had progressed so radically. It was at 33 degrees when I was a teenager and lead to believe that it wouldn't get worse. I nearly fell off the table when the dr. started measuring and heard 78 degrees. I took fosamax for 3 years and developed bleeding ulcers. Took actenol for another 3 years but continued to lose bone density. My dr. started me on forteo in Sept. I only need to take it for 18 months. I guess it is a mega dose of calcium. Anyway, my surgeon was thrilled that I was on this medication and stressed that I continue to take it while in the hospital. Today marks the 7th week post-op. Broke out in hives over the weekend, so I'm off all pain meds except tylenol and tylenol with codiene at night. The pain isn't great but never seems to stay in one place very long. Right now I'm experiencing a pulling sensation between my shoulder blades. I think this is like having a facelift on your back. Suddenly things are being forced to move in a direction where they haven't gone in a long time. I am doing so much better than I was 4 weeks ago. It just takes a long time. Books on tape help pass the time (reading is impossible) and I do a little embroidery work that doesn't require much thought. If you just sit, the pain will get worse. Good luck to all facing surgery.

MaryK
05-19-2004, 02:21 PM
I remember that shoulder blade pains well! As I remember they were the worst for me to deal with. I had a should injury just weeks prior to surgery.

Cheryllee, my dad also had health problem prior to surgery. He, and I, had scoliosis with kyphosis as well. His heart and lungs were being kept from working properly. Hs problems did disappear after surgery! Though smoking has kept problems with his lungs present. So the possiblity to get better is very, very real! Just hang in there!

Connie, you'll be amazed by the changes in your life once you recover from surgery!

Kathi
05-20-2004, 08:41 AM
Connie: Isn't it funny how everyone "knows" what you should do. They don't stop to think that no one in their right mind would sign up for surgery...if they had a choice. It sounds to me like you have progressed far beyond having PT solve your problem. Between your age and the degree of your curves, therapy isn't going to change your curve. It may strengthen your muscles and improve your circulation, but I can't believe it will improve your curve. What PT might do is assist in making you stronger for your surgery and recovery. I know in that respect, it helped me. Check with your doctor and see what he says. I have always found aquatic stretching/exercise to be helpful. Not as painful while you are doing it as land exercise. I was diagnosed at 7, had first surgery at 13, second at 34, and now at 57...I am probably looking at another within the next year. After the two surgeries I have been reduced to 80 degrees lumbar and 47 thorasic. July 03 had both hips replaced. Now have fibromyalgia. Anyone else with fibro? I've wondered it there is a connection to the scoli. I don't remember ever being without pain. It is, and always has been, a constant in my life...just like many of you. The only thing that varies is the location and intensity. My best advice...Find a GREAT doctor. You can't do much about your condition, but you can work...and I mean work hard...on finding an outstanding doctor. Research, research, research. Educate yourself about your condition. Ask questions. Then...get a second opinion from another GREAT doctor. Pick the doctor you feel is most qualified and that you feel comfortable with. THEN...ignore the naysayers. Tell them your doctor's qualifications...and tell them you have researched and have decided you have no choice but to have the surgery. Tell them what your life will be like if you do not have the surgery. Ask for their prayers and support. Tell them how having the FULL support of family and friends is documented to make a difference for the patient. I hope some of this has helped you, Connie. I wish the best for you, and will look forward to following your progress.

To All: This is only my second day on the forum. So many of you out there sound just like me. It is good to be able to connect with people who know what it means to be going through these types of problems...the physical...the emotional...the family. Kathi

momoflacrosse
05-20-2004, 04:21 PM
wow - what an awesome post Kathi - my hats off to you. I am seriously looking for a surgeon and being in the Toronto area the choices are limited and the wait is long but I am not giving up. If I don't do sosmething soon I know that in 10 yrs I will be in a whell cahir or close to it. It is so hard to have friends and family understand just what we go thru when pain is 24/7 and really the driving force in our lives. I am always being told I shouldn't take drugs - well all they do at this point in time is make my life a little more bearable - it isn't that I take them for kicks lol. As you said why would anyone choose to have a huge operation like this unless it was going to improve our quality of life. Qudos to you girl I salute you and please keep posting or email me as I would love to keep in touch as I persue this surgery. I am susre that your words of wisdom have helped Connie with her preparation as well.

Nancy

spincon58
05-20-2004, 06:43 PM
Hi,

Welcome aboard !!!!Kathi, we love to hear anything you have to say...yes your words were comforting....to help my self get thru the next couple of weeks is keeping as busy as possible so i don't have to stop and worry......I know i shouldn't but i really want to horseback ride...because i know i never will again...i tried to swim last night(only because I was tired of hearing my doctor tell me to swim) anyway I was so sore the next day....yikes....

I'm cleaning house...throwing every toy imaginable...i kept everything...now bye bye to all...i'm having a huge yard sale....and taking all the kids to the doctors....

time will go bye quick..and soon enough..

spincon58
05-20-2004, 06:43 PM
Hi,

Welcome aboard !!!!Kathi, we love to hear anything you have to say...yes your words were comforting....to help my self get thru the next couple of weeks is keeping as busy as possible so i don't have to stop and worry......I know i shouldn't but i really want to horseback ride...because i know i never will again...i tried to swim last night(only because I was tired of hearing my doctor tell me to swim) anyway I was so sore the next day....yikes....

I'm cleaning house...throwing every toy imaginable...i kept everything...now bye bye to all...i'm having a huge yard sale....and taking all the kids to the doctors....

time will go bye quick..and soon enough..

Kathi
05-21-2004, 09:00 AM
Nancy: I had to giggle when you mentioned your family not wanting you to take drugs. What a hoot! How do you not take them? Like you said, even with the "heavy duty" ones, it is not always enough to make things bearable. When I was 23, my doc was telling me to take pain meds. I didn't. I am glad I didn't...because I did manage to function pretty well and the pain was managable for the most part with over the counter stuff. When things flared up from time to time, I would take some Tylenol with Codeine 3. I was concerned about taking them at that stage because I knew my back was likely to get worse over time. Then, at 54 (3 years ago) my situation changed again. My back pain started getting worse again and my hips were getting bad too. And I said "You know those pain meds? Bring them on!" I've been on Percocet and Hydrocodone in some combination for about 2 years now. I use the percocet most often, but when I am having a decent afternoon, I'll take the Hydrocodone instead. I also take Neurontin, Trazodone, & Mobic. Was I concerned about addiction? You bet. I did a lot of research. I have talked to all the docs in NY...including the pain management specialists...and several doctors here. All of that reasured me of one thing. YOU DO NOT GET ADDICTED TO PAIN MEDICATION IF YOU ARE TAKING IT FOR PAIN. If you don't have pain or the pain is mild, and you are taking it to "get high" you will become addicted. I think it is safe to assume that those of us on this forum and those like us are not running around laughing and carrying on after we take our pain meds. Oh, that it were so! So...what have I learned over the years? Quality of life is precious. Ours is compromised, sometimes seriously, by our scoli and other problems. If pain meds help improve or restore that quality of life and I have the encouragement and of my Doctor to take them... by golly I am taking them. Shame on those around us who don't have the faith in us to trust our informed judgement. Take care, Nancy and please keep in touch. The search for a great doc is hard work and very time consuming. But keep trying. It can make a huge difference to have the right doctor.

Kathi
05-21-2004, 09:07 AM
Connie: I am so glad that your surgery is soon. I know it can be a little scary, but I always try to look at surgery as a new beginning. A new life that is better than what you know now. A new life with less pain. It is the first day of the rest of your life. You are doing all the right things getting the house, etc. in order. That means less to deal with post-op. Smart thinking! Take care. Would it be ok if I put your name on our prayer chain at church? Kathi

Dorinda
05-24-2004, 02:07 PM
Hi Connie!

I went through many years of physical therapy, chiropractic, yoga, etc., trying to do everything possible to avoid surgery. As a teen, I was told by my orthopedist, that my 30 degree thoracic curve was stabilized and would not progress. Guess what? By 51 years of age, it had progressed to 74 degrees, started affecting my lung function and my ribs were painfully rubbing against my hipbone before I finally gave in to surgery last March.

Recovery is slower than I have the patience for, as I've always been very active and independent. The surgery was successful and I'm glad I finally did it. However, in retrospect, I wish I'd had it done earlier in life. My 22 year old daughter also has scoliosis -both curves off less than 20 degrees presently - and the best advice I can give her is not to wait as long as I did if it starts progressing towards 40 degrees. I do believe the results and recuperation are much better at a young age.

I wish you the best of luck! :)

spincon58
05-24-2004, 04:05 PM
welcome dorinda,
it's great to hear about your recover from surgery..it really helps ...i've never had to make a more serious and difficult decision in my life...when you say that u wish u had it sooner...helps ease my mind...b/c sometimes i'll think maybe i'll wait a couple of years....but my surgery is set and i will follow thru.
\thanks for the input and please continue