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Sammyboysmommy
09-20-2005, 11:25 PM
Hi everyone,

I've only posted once or twice here, but I have a question. How many of you either pre or post op have had horrific pain in your back, shoulders, neck before the surgery? I am in SO much pain. Even my ribs hurt. I can hardly pick up my 20 mos old son to even put him in the crib. I've been so depressed lately about this....I can't even do normal housework. Sorry to complain so much, but no one seems to believe how bad the pain is. Tell me I'm not over reacting...lol

Lois

gina lea
09-21-2005, 10:59 PM
I did have some pain pre-op, but it was more of a dull ache- like my back was tired. At the risk of sounding like a callous idiot, maybe you should try to cool it a bit on the housework and lifting, as repeatedly bending over is required to perform those types of tasks. I suggest you get your husband/boyfriend/significant other to do the housework for a while to give you a rest (if you can-I don't know your situation)- you deserve it! I mean, being a new mommy is hard enough when you are in perfect shape, let alone when you are a scoli patient. :)

KRIS ATKINSON
09-22-2005, 05:24 AM
Lois, are you planning to have surgery? Kris

ScolioGirl
09-22-2005, 07:20 AM
I have constant pain, but it doesn't sound horrific like you're describing. It's about a 6, 6 and a half on the pain scale. Have you tried talking to your doctor about physical therapy or an anti inflammatory? Some other form of pain management?

kates mom
09-22-2005, 11:56 AM
This is just my opinion, but I think any significant pain that goes on for an extended period of time is "horrendous pain". My daughter has been dealing with pain for over 2 years now and on the rare occasions that she isn't in a lot of pain, she is anticipating the pain. Both experiencing and anticipating the pain is terrible. It affects every aspect of your life, and the lives of those closest to you.
I think in the case of my daughter I waited too long to get her some real help for her pain. If I had it to do over again, I would have signed her up for pain management much earlier than I did and not just accept narcotic therapy to tide her over.
As I said, these are just my opinions. Everyone has to do what is best for themselves.
Take care of yourselves.
Kathy

Sammyboysmommy
09-22-2005, 09:01 PM
I did have some pain pre-op, but it was more of a dull ache- like my back was tired. At the risk of sounding like a callous idiot, maybe you should try to cool it a bit on the housework and lifting, as repeatedly bending over is required to perform those types of tasks. I suggest you get your husband/boyfriend/significant other to do the housework for a while to give you a rest (if you can-I don't know your situation)- you deserve it! I mean, being a new mommy is hard enough when you are in perfect shape, let alone when you are a scoli patient. :)

Hi Gina,

You don't sound like a callous idiot at all! I thought you were gonna say "Stop being such a baby!" lol :D Anyway, I'm a single mom and I don't really have anyone to help with housework. Everything in my life and my son's life that needs to be done - I do. Not trying to cry on anyone's shoulder- but that's the truth. I try to do heavy housework on the weekends when I have more time to lay around afterwards (with Sam, my son, climbing all over me! haha). The pain I have is like a squeezing pain all over my back when I breath in. I also can feel how out of line my body is - does that make sense? I get a dull ache in my lower back and anyway I try to lay down when going to bed kills - honestly. I usually end up sleeping like a newborn does - knees tucked under my chest. Its just gotten like this in the past few mos and I'm scared that it will get worse, ya know? Anyway, thanks for replying to my post! :o

Sammyboysmommy
09-22-2005, 09:03 PM
Lois, are you planning to have surgery? Kris


Well, I do want to get surgery done. I went to a surgeon last August (2004) and he wanted to the surgery pretty soon after that. However, I have no one to help with my son after the surgery. The dr said I should have someone help for at least 3 mos post-op. He said I wouldn't be able to lift for 3 mos either - is that true? I'm checking with my insurance co to see if they pay for nurses/aides - but I doubt it. So, I am planning on the surgery but I have no idea when.

ScolioGirl
09-22-2005, 09:07 PM
Kathy ~ I totally agree with what you said about it affecting every aspect of your life and those around you. It's affected my life, I know, in a tremendous way.

Lois ~ I hope you can figure something out. There's a lot to plan with surgery, as I'm sure you know!! Meanwhile, I'd check in with the doctor about PT, anti inflammatories, electric stimulation, anything.

Lavinia
09-23-2005, 06:36 AM
I also agree with the impact enduring pain has on oneself and family. Since I have accepted that my pain is not going to reduce in the short term at least, it has actually got easier to manage. I've found some websites for people in chronic pain to be helpful in all sorts of ways - happy to give details if anyone contacts me by email.

Lavinia

KRIS ATKINSON
09-23-2005, 08:35 AM
Lois, do you have any support system locally? Family, friends, church or organization group? Kris

Ken
09-23-2005, 04:40 PM
I also agree with the impact enduring pain has on oneself and family. Since I have accepted that my pain is not going to reduce in the short term at least, it has actually got easier to manage. I've found some websites for people in chronic pain to be helpful in all sorts of ways - happy to give details if anyone contacts me by email.

Lavinia

Hi Lavinia: I tried to email you, but it wouldnt allow me to, But I would like the info on pain mgt.. please email to me: askforken@aol.com
Thank you! :D

Lavinia
09-24-2005, 03:11 AM
Computer seems to be playing up at the moment. In case anyone else has been trying to get through, sites I have found helpful are

www.painsupport.co.uk
www.coventrypainclinic.org.uk

Best,

Lavinia

crookedspine
09-24-2005, 04:51 PM
Back in April (when I first found out that I will need surgery...after 48 years of pain), I was in such horrific pain that I literally could not get out of bed, in bed, stand up, sit down. My husband had to help me in and out & even that was horrible! He had to dress me, also. :o I haven't been dressed since I was 3! My doctor sent me to a pain management specialist where I received some shots (wonderful shots!). I had to go twice, but it has held :D until recently. My insurance covered most of the shots, so maybe yours can, too. As for help when you have your surgery, the question has already been asked whether you have any type of support -- i.e. church, family, neighbors. I guarantee, if you lived nearby, my family and I would help in any way we could. I'm sure there are others. Don't wait too long for your surgery. But please, get a second opinion. Linda

Ken
09-24-2005, 05:18 PM
Back in April (when I first found out that I will need surgery...after 48 years of pain), I was in such horrific pain that I literally could not get out of bed, in bed, stand up, sit down. My husband had to help me in and out & even that was horrible! He had to dress me, also. :o I haven't been dressed since I was 3! My doctor sent me to a pain management specialist where I received some shots (wonderful shots!). I had to go twice, but it has held :D until recently. My insurance covered most of the shots, so maybe yours can, too. As for help when you have your surgery, the question has already been asked whether you have any type of support -- i.e. church, family, neighbors. I guarantee, if you lived nearby, my family and I would help in any way we could. I'm sure there are others. Don't wait too long for your surgery. But please, get a second opinion. Linda

Hi Linda - what kind of shots were they?? Also, have you tried a better mattress & or foam mattress pads - (this helped me alot). :)

crookedspine
09-25-2005, 11:05 AM
The shots that I had were steroid shots. They worked great! My last (second) one was the 1st week of May. They only allow 3 in a six month period. I have been waiting for my 3rd. My back has started the same old things.....the muscle on my right side is "bulging", a burning on my right hip, aching/hurting in hip & back areas...just the last few weeks. I am hoping to be able to bear it until November when I have my surgery. However, if it even BEGINS to get as bad as it was then, I will get the last shot. Consult your doctor, get a second opinion (if you haven't already).

Also, check with the local churches around you. Many of them (especially Lutheran) have programs to help people in your situation. I used to belong to a Missouri Synod Lutheran church that had a great program. All they needed to know is WHO needed help & they were there. Please contact a church that you will feel comfortable contacting (I know that it is not easy asking for help, but you really do need it! Good luck & God bless you and your child! Linda

Sammyboysmommy
09-25-2005, 12:16 PM
Thanks for all the replies and ideas. Unfortunately, I don't have family that is willing to help. My sister has two little ones and a job. My aunt has two kids at home also and works. No one else is willing to help. But I will look into the shots and getting some help with Sam. Thanks again!

crookedspine
09-26-2005, 08:44 PM
Don't give up! Keep a positive attitude, please. PM me at royandlinda@ev1.net. I will try to find someone in the area that can help. Let me know the general area that you live. Linda

nuts and bolts
10-06-2005, 09:05 PM
I guess I'm going to be known as the discourager in here, but I feel very strongly about this, atleast based on my experience. After I had my baby, I experienced horrible pain all through my back, specifically in my shoulder and one particular side. It became so bad that I got more desperate for surgery as a cure. When my son was two, I finally got the surgery. I regret it more than anything I've ever regretted. I would give anything to be able to pick up my boy and have the back pain I used to have, compared to the back pain I have now-one year after surgery. Scoliosis causes a lot of pain, but back rubs, hot pads, PT, and lots of other things can make it feel better, even if momentarily. But after surgery, back rubs don't even feel good anymore. I've lost the ability to do so many mommy things, when before I could atleast do them, whether painfull afterwards or not, atleast I had a choice. My boy is three now and everyday this summer, I've been desperate to be able to bend over and put his little feet on the bicycle pedals and teach him how to pedal, but I can't bend in that way anymore. My advice is to take advantage of hot baths and heating pads and back rubs as a way to get through it. May God bless you with freedom from pain.

LindaRacine
10-06-2005, 11:24 PM
Hi Nuts...

Have you considered getting an opinion from a doctor other than your original surgeon? Where are you located, and who did your surgery?

--Linda

sweetness514
10-07-2005, 03:40 PM
Nuts...

I understand to some degree what you mean. I did have surgery when I had no choice whatsoever and couldn't sit or stand for more than a little while. Now I see that it was good for that, but as far as being flexible I know it's different for everybody, but I could do everything before and was SO flexible, like for example get into my sports car that I had to sell after the surgery.

I would do it again since having a big curve is not only bad for our overall health but at least I'm more straight now and can sit longer. The pains are different. What I'm really discouraged about is having a broken rod and loose screws after only 6 to 8 years post surgery, when they suggest that we can play football and do whatever we want without breaking anything- WRONG. I can't believe the hadware can be so fragile, and I also know now that waiting longest to have surgery is the best option since so many problems can occur later on, such as DDD, and like myself broken hardware needing another surgery. I'm so glad I waited to have it when I was 26, unlike when I was 18 and pain free(for the most part), and didn't listen to family and doctors then.

Don't despair though, and please see another orhto. It took me two years to really feel all healed and had to get a hook removed at one year post op, so there is always something that can be done for pain. Icing helped me a lot, unlike heat that made me swell but I know we're all different :)