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fatimah
07-27-2012, 11:57 AM
HEY, am new in this forum and posting thread for the first time, I need help.Actually I had thoracic idiopathic scoliosis with 112 degree and 38 degree.I have had my surgery in feb 2012.it was successful.my correction was very good.I am and was really so satisfied from my correction.But as the 1 month passed i start feeling that my structure is changing again and it happened .My x-rays are same but the structure is not.My doctor said the you are fine.But actually I am not.I have severe pain in my lower back.I am unable to sit more than one hour.5 months have been passed of my surgery but am not recover fully.I am so upset and need guideline.please give me some guideline...

JenniferG
07-27-2012, 06:27 PM
So many questions Fatima. How old are you? Do you know if BMP was used in your surgery (this is a product used to encourage fusion.) Can you explain how your structure is different?

People heal differently. Five months is still early. It's hard to say what the problem is, if any, without more detail.

I hope this is just normal healing for you, of course, time will tell.

fatimah
07-30-2012, 09:56 AM
I am 15 years old.and I don't know whether BMP WAS done or not.I will confirm it from Doctor and then I will tell u.
just 5 months have passed, me And even my doctor dont what has happened to me.am in great trouble:(
Structure is different because when the surgeon has operated my back was straight there was no outer deformity.I was cosmetically perfect.There was just a little scapula hump.But as the months are passing my posture is becoming same as it was before surgery(so worst)
And one more problem is that i still bear pain although 5 months have passed.I have pain in my lower back.
I am not able to sit more than for 2 hours:(
Dr Max and Dr Asad had done my surgery.

susancook
08-02-2012, 02:00 AM
No advice. Just sending a hug your way and wanted to say that I'm thinking of you and hoping that you improve.

Where did you have your surgery?

Keep a journal of where it hurts and how much it hurts and keep telling them.

Hugs, Susan

susancook
08-02-2012, 02:06 AM
No advice. Just sending a hug your way and wanted to say that I'm thinking of you and hoping that you improve.

Where did you have your surgery?

Keep a journal of where it hurts and how much it hurts and keep telling them.

Hugs, Susan

JenniferG
08-02-2012, 05:32 PM
Who do you see at follow up appointments, Fatimah? Just wondering if you're getting competent after-care, by someone who can either reassure you or be aware if something does go wrong.

Hoping for the best for you, and hoping your worries turn out to be nothing. Give it a little more time and see if you have improvement.

fatimah
08-05-2012, 06:27 AM
Yeah, my surgeon has also advised me to wait for sometime and see that any more deformity occurs or not.
But am so scared that by waiting i could be late:(:(

mbeckett
08-11-2012, 01:16 AM
HEY, am new in this forum and posting thread for the first time,actually I need help.Actually I had thoracic ideopathic scoliosis with 112 degree and 38 degree.I have had my surgery in feb 2012.it was successful.my correction was very good.But as the 1 month passed i start feeling that y structure is changing again and it happened .My x-rays are same but the structure is not.My doctor said the you are fine.But actually i am not.I have severe pain in my lower back.I am unable to sit more than one hour.5 months have been passed my am not recover fully.I am so upset and need guideline.please give me some guideline...

My curves were 72 thoracic and 46 lumbar and I just had 2-stage surgery this past May. I am about 11 weeks post-op and was told by my surgeon not to sit for extended periods of time without getting up and moving around. Sitting for 1 hour is a long time without getting up and changing positions. Are you doing any walking during the day to help exercise your muscles? Five months post-op is still early in your recovery. I was told to be extra careful the first 6 months and to be protective of myself for 9 months. To not take my surgery for granted and to allow myself time to rest each day in order to heal. You need to listen to your body. If your back starts to bother you, then you need to stop doing what you are doing and either change positions or lay down and rest. I did not listen to my body the other day and I paid the price by my back hurting me well into the evening and that was the first time I actually had pain. Be sure to balance your activity with rest and watch your body mechanics to make sure that you aren't doing something that you are not suppose to be doing.

Lastly, someone on the forum mentioned possibly seeing another surgeon for a second opinion. That might not be a bad idea if you are questioning your surgeon's decisions. Good before and after scoli x-rays should show whether or not your structure has changed and how much. Your doctor should be able to determine that.

I'll keep you in my prayers and hope you find an answer soon.

Marjorie

fatimah
08-11-2012, 06:33 AM
I was totally fine and was recovering so good after the surgery the time when I use too lay for the whole day.this was the period of 1 and half month.But when i started to do some walk and use to sit the change start occur.I believe that this has happened when i have start doing walk and sit..
Am so scared of this and that is why i don't use to sit for too long.I am disturbed much because in the week of my surgery 5 more surgeries were done and all else are fine and are properly moved toward their normal life.They use to sit for many hours and are returned to their schools and colleges and they are pain free.
Yesterday I was looking in mirror and I feel that my right side scapula is also become more prominent.. :(

Pooka1
08-11-2012, 09:42 AM
Am so scared of this and that is why i don't use to sit for too long.I am disturbed much because in the week of my surgery 5 more surgeries were done and all else are fine and are properly moved toward their normal life.They use to sit for many hours and are returned to their schools and colleges and they are pain free.
Yesterday I was looking in mirror and I feel that my right side scapula is also become more prominent.. :(

Fatimah,

Did those other people have a 112/38? I am guessing not. Your curve was very large and you may have had more procedures or a longer fusion than those other people. How long is your fusion and where does it start and stop? Fusion length seems to correlate roughly with recovery time. The adults who only have thoracic fusions tend to recovery more quickly than those with fusions into the lumbar and to the pelvis.

Don't beat yourself up over having a different curve than the others. Everyone is different.

Good luck.

fatimah
08-12-2012, 09:18 AM
Yeah, You are right.Others don't have this so much curve like me.
My fusion was in thoracic area,some lumbar part is also included...

GOE
08-13-2012, 01:38 PM
Yeah, You are right.Others don't have this so much curve like me.
My fusion was in thoracic area,some lumbar part is also included...


Fatima -

Hope all is well. I just wanted to respond to this since there are not too many of us on the forum with very severe curves in the 90-120 range. I felt thesame way too after my surgery and felt like my structure had changed which I guess it did. My doctor says that the spine settles into its own shape over the course of the year while you are fusing. He says if it is in the 5 degree range you should not be too worried as that is normal.

Also because of your large thoracic curve which must have come with some amount of rotation as well, it is impossible for the back to be cosmetically perfect except a thoracoplasty was also performed. I know exactly how you feel though cos right after surgery and even for my 1 month visit, my back was sooo straight but I guess as the swelling went down I realized that I did still have a residual rib hump. Not as bad as before surgery but there nonetheless.

I just want to allay your fears that something might be wrong or that you did something wrong to mess up your structure as this may not be the case and your spine might just be settling and the swelling going down so you are noticing more. That being said, please continue to follow your restrictions carefully and also keep a close eye on your body. You know your body best so if you feel it is changing rapidly then maybe go in for a visit so they can measure and make sure everything is in place. That will help put your mind at rest .

Also with regards to your pace of recovery. Please do not beat yourself up or compare yourself with others. I have done that for the past one year and felt so bad that I was not recovering as quickly as I thought for my age but I never sat back to consider the fact that i had two major curves both almost 90 degrees. You need to give your OWN body enough time to do what it needs to do ! The recovery is hard enough on its own but you have to remember that we are all so unique. You had a curve above 100 degrees so I am sure some major work was done ! You will get there. Just give it time.

Take care and wish u the best with your recovery. I can understand that it is a very emotional time.

fatimah
08-14-2012, 09:27 AM
I am feeling so glad and comfort by reading your thread.I think you are right that my structure is adjusting because my bone is at its same position where my surgeons have adjusted.I pray and request you too for pray that nothing go wrong with me because i am so glad and satisfied with my surgery because my surgeon had done the correction more than my expectations.
Just scared from my pain and the increased hump because i use to think that this has happened due to some fault..
But still hoping for the best that with the prayers of u all and my relatives i will get rid of this too.
:)

Doodles
08-14-2012, 02:35 PM
Fatima--

All that you describe I can relate to. I think it is true that the rib hump appears larger after the swelling goes down. I still am concerned about that but knowing what a huge curve and rotation I had, I guess that's just the way it is. Still better than if I hadn't had it done! I was also told that the spine was settling where I lost some correction at the highest levels. Prayers and positive thoughts for you as you go through your recovery. Best wishes. Janet

fatimah
08-15-2012, 04:28 AM
Fatima--

All that you describe I can relate to. I think it is true that the rib hump appears larger after the swelling goes down. I still am concerned about that but knowing what a huge curve and rotation I had, I guess that's just the way it is. Still better than if I hadn't had it done! I was also told that the spine was settling where I lost some correction at the highest levels. Prayers and positive thoughts for you as you go through your recovery. Best wishes. Janet

Am agree with your opinion too.I also wants to know about yours experience of pain that up to how long you had bear pain??
because 6 months post-op still have pain in lower back.

Doodles
08-15-2012, 01:08 PM
Fatima--
I was on pain meds for more than a year but I'm so much older than you! I still have occasional bouts of leg or back pain every few months. Currently having problems from a near fall and am taking meds right now. Usually after a few weeeks the problems disappear as mysteriously as they started. Janet

GOE
08-15-2012, 01:08 PM
Fatima--

All that you describe I can relate to. I think it is true that the rib hump appears larger after the swelling goes down. I still am concerned about that but knowing what a huge curve and rotation I had, I guess that's just the way it is. Still better than if I hadn't had it done! I was also told that the spine was settling where I lost some correction at the highest levels. Prayers and positive thoughts for you as you go through your recovery. Best wishes. Janet

Janet -

Quick question for you. How much correction did you lose and you said it was just at the highest levels so does that mean that you only lost correction in your thoracic curve ? Also you mentioned you were still concerned . Do you still feel like you are still losing correction or that your spine is continuing to rotate? The reason I ask is because I have thesame concern and keep looking at the mirror and feel like it is changing. Like you it is still better than if I had not had it done but hoping it does not continue to a point where it wouldn't make a difference if I had it done or not :(

Fatima, I had severe pain esp in my lumbar area well into my 6 month and questioned why I had the surgery. I however felt much better by the 7th month so give yourself a little bit more time. I don't think your lumbar was as bad as mine but then you had a pretty big thoracic curve. Hang in there. Sending warm thoughts and wishes your way.

fatimah
08-16-2012, 09:21 AM
And for how long You were able to sit..??
I don't like to use medicines because I feel that I will become addict of them.So, I more prefer to use heating pillow to get relief.
What about you people,were just depended on medicines??

Doodles
08-16-2012, 02:00 PM
Fatimah--
I wouldn't worry too much about the meds at this early point. You want to be pain free enough to be able to get in lots of walking.
GOE--
When I went a year ago April, I could tell see a little shift in the very top around T2 and T3. Dr. Lenke agreed that it had settled some. Also agreed that the rib hump had gotten a little worse. To me it seems like that is slowly continuing. I don't really see an alternative except the thorcoplasty which I don't think Lenke would even consider. I asked about it once in an e-mail to Kelly and she said No! I'm sure without the surgery I would have had an enormous rib hump by now. He had told me last year I didn't need to come back for 3 years. Janet

GOE
08-16-2012, 09:23 PM
Fatimah--
I wouldn't worry too much about the meds at this early point. You want to be pain free enough to be able to get in lots of walking.
GOE--
When I went a year ago April, I could tell see a little shift in the very top around T2 and T3. Dr. Lenke agreed that it had settled some. Also agreed that the rib hump had gotten a little worse. To me it seems like that is slowly continuing. I don't really see an alternative except the thorcoplasty which I don't think Lenke would even consider. I asked about it once in an e-mail to Kelly and she said No! I'm sure without the surgery I would have had an enormous rib hump by now. He had told me last year I didn't need to come back for 3 years. Janet

Fatimah , I agree with Janet. Please take the medoicatiom that you need. I cut of all meds at 8 weeks for thesame reason as you but like I mentioned I was in severe pain for atleast 6 months. I did manage to keep up the walking thought but I was always soooo miserable with the constant pain. Now that I look back that was unecessary hardship and pain that I inflicted on myself while goingthrough an already difficult recovery. At that point all I could think of was how much I hate meds, not wanting to get addicted and also the fact that I had read that some people were off meds in 2 months. Lesson learned is for this recovery don't compare yourself to others. If you are in pain take the meds. I sat quite a bit in my recovery cos after the first month it was just sooo boring always being in bed. I would say at 5 months I could probably sit for an hr or two but always ended up in a lot of pain from that so again probably not the best position. If you can recline while sitting your back might tolerate that better.

Thanks Janet for your response. Dr Boachie will not consider a thoracoplasty for me too. He says it is not worth it and only recommended for rib humps above 25 degrees. Also said esp in my case with all the post op pain I am still having I would not tolerate that trauma too well. Oh well thoughts and prayers that the shifting/settling stops for us all and we can one day stop having to peep into every mirror we walk past.

fatimah
08-18-2012, 08:55 AM
Fatimah--
I wouldn't worry too much about the meds at this early point. You want to be pain free enough to be able to get in lots of walking.
GOE--
When I went a year ago April, I could tell see a little shift in the very top around T2 and T3. Dr. Lenke agreed that it had settled some. Also agreed that the rib hump had gotten a little worse. To me it seems like that is slowly continuing. I don't really see an alternative except the thorcoplasty which I don't think Lenke would even consider. I asked about it once in an e-mail to Kelly and she said No! I'm sure without the surgery I would have had an enormous rib hump by now. He had told me last year I didn't need to come back for 3 years. Janet
Jannet:
AM really feeling so sad that still your hump is increasing.. :(
Although,3 years are passed.Your Dr haven't told you the reason of that.Because according to my very little info the changing again of bone after surgery is just rarely happens in case of adolescents whose growth isn't stopped..??

fatimah
08-18-2012, 09:03 AM
Fatimah , I agree with Janet. Please take the medoicatiom that you need. I cut of all meds at 8 weeks for thesame reason as you but like I mentioned I was in severe pain for atleast 6 months. I did manage to keep up the walking thought but I was always soooo miserable with the constant pain. Now that I look back that was unecessary hardship and pain that I inflicted on myself while goingthrough an already difficult recovery. At that point all I could think of was how much I hate meds, not wanting to get addicted and also the fact that I had read that some people were off meds in 2 months. Lesson learned is for this recovery don't compare yourself to others. If you are in pain take the meds. I sat quite a bit in my recovery cos after the first month it was just sooo boring always being in bed. I would say at 5 months I could probably sit for an hr or two but always ended up in a lot of pain from that so again probably not the best position. If you can recline while sitting your back might tolerate that better.

Thanks Janet for your response. Dr Boachie will not consider a thoracoplasty for me too. He says it is not worth it and only recommended for rib humps above 25 degrees. Also said esp in my case with all the post op pain I am still having I would not tolerate that trauma too well. Oh well thoughts and prayers that the shifting/settling stops for us all and we can one day stop having to peep into every mirror we walk past.
The whole you have told about yourself is the same with me..I also feel lot of pain after sitting for hour r 2..
I will really follow ur's and Jannet guideline.
Raising 1 more question;)
you all are so experienced and can tell me better that upto how much walk i should do..??

titaniumed
08-18-2012, 11:44 AM
Fatima

You had a huge correction which will take some time to recover from. Sitting for long periods of time is difficult for most of us, try to get up and do a little walking from time to time. Many short walks are better than one long walk. Pushing past the pain seems to be something we have to do, the pain should subside in time. Keep moving, its important.

We have to consider ourselves fortunate that the technology to do something like this is available. I am thankful every day.

Hang in there, improvement will happen

Ed

GOE
08-21-2012, 05:06 PM
The whole you have told about yourself is the same with me..I also feel lot of pain after sitting for hour r 2..
I will really follow ur's and Jannet guideline.
Raising 1 more question;)
you all are so experienced and can tell me better that upto how much walk i should do..??


Fatimah -

At 5-6 months I was walking about 5miles about 4-5 times a week. So I guess every other day. That being said by the time I went for my 6 month appt I was in soooo much pain and could not even go back to work full time as planned. So after that visit, I cut down my walking to about 2-3 miles 4-5 times a week and that felt much better and manageable. I was still in pain but it wasn't as bad. I would say listen to your body. If you do two miles and it is too much then cut back. If you do 5 miles and you are not in too much pain then continue with that. I have read on the forum people walking anywhere from 1mile to even much more but I think the key is not to use anyone' syardstick but listen to your body and adjust to firt you needs.

walking is good for you but the goal is not to make you sooo misreable that you can't function. Hope it makes sense.

Gentle hugs. It is a long road cos your recovery seems soooo much like mine and I know I was very depressed at the 6 month mark. I hadn't expected that given my age but you live and learn. If you don't mind my asking, how old are you fatimah ?? Sending healing thoughts your way.

fatimah
08-22-2012, 07:43 AM
Am feeling so worry because i don't use to walk so much.I just use to take some movements:(
But i will start proper walk from today...
And thanks alot for your lot of help to me.
I am of 16 years and have posted my thread in adult forum because you people are so experienced and can better help me...
Regards..
Fatimah