View Full Version : New and would like to share my story and need some advice

07-25-2006, 12:39 PM

My name is Mariya and I am 24 yrs old. I am a mother of two girls ages 3.5 and 2 yrs. This is my first time in the forum and I love reading all of the stories as it gives me a lot of encouragement.

I was diagnosed with scoliosis when I came to this United States when I was 12 years old. I can't remember my curves at the time but it was just a slight curve that doctors did not need to treat. I had no pain and felt great. After having my second daughter, I definitely saw big changes in my physical appearance although everyone that knows me thinks its not noticeable at all. My shoulders and my waist line are uneven and one hip is lower than the other one. I saw an orthopedic surgeon and found out that I had an S shaped scoliosis and my upper curve was measuring 27 and the lower was 45. The doctor said that I should have the surgery done within the next five years and my husband and I were just a little shocked after we saw the curve in my spine on the x-rays. My second daughter was only 2 months old at the time and I certainly never had thought anything serious about my back because I had no pain. Then I started to feel some back ache and at first thought it was just from being at work and coming home tired and exhausted to two kids that were still in diapers but then I started feeling a lot of pain in my back after I would do simple things like washing dishes or giving baths to my kids. I am more and more uncomfortable doing the things I normally used to do and so I ask my husband or the babysitter to do it for me because I hate to have that kind of pain and I am very stressed and irritated when I am in pain.

I really feel down at times and especially when I can't take care of my own family without the pain. When my back hurts I ask my husband to give me a massage and that works only for a few minutes. My husband is really a great person and he helps me a lot with everything. He believes that I should have the surgery asap and that sooner or later I will have to do it. Friends and family think that I am crazy and that my back looks straight. They also say that their back hurts too and that most people have back problems and I jsut say to them its not the same but then I wonder at times maybe afterall it is normal to have back pain. I feel confused.

I feel very scared of having this surgery and my parents are scared as well. They are really worried about it and they think that it is a very complicated surgery that involves a lot of risks. However doctors make it seem like a very common surgery and they say that the risks are very small. My parents believe that I want the surgery done for cosmetic purposes. I guess our biggest fear is paralysis or nerve damage even though the doctors reassure you that the chances of that happening are really low. Perhaps itís not an easy decision to make especially when you have a family and kids that really need you.

I am struggling a lot with the decision that I need to make and I agree with my husband but I am still a little nervous and plus my parents are not supporting me on this. I really think that they are just very worried and scared of the outcome. Then they also tell me that I don't know how I would feel after surgery and that the pain may not go away and that surgery may even cause more pain as has its own complications. And so they tell me since there is no guarantee that the pain will go away after surgery then why would go for such a risky surgery where you might become disabled.

I must say that having read so much about scoliosis and treatment options and surgeries I gained a lot of knowledge that I did not have before. It really helped me to overcome my fears somewhat but my parents are just not so informed. They still think that accidents do happen even by the best doctors and they always remind me of the family members that had undergone some sort of complicated surgery and were either disabled or became blind after having an eye surgery.

Lastly, I just want to make a decision because I think that now would be the best time to get the surgery done because I would like to change my job soon as it is very stressful and so I would prefer to get the surgery done before I switch a job and I would get the disability from my work. One other important reason for having the surgery done now is that we have the most incredible babysitter and she takes great care of our kids. I trust her and the kids are so used to her because she had been with them since they were born. She would be leaving the country in a couple of months and I think that she would be the best care giver to my kids while I recover. So I feel a lot of pressure because since the day I found I have scoliosis I think about it everyday.

I have a great surgeon in mind as well. I found out about him on the internet (at scoliosisassociates.com) and also as a coincidence heard about someone who had a successful surgery done by him. I also spoke to nurse (she is a frined of my cousin) that actually operates with this surgeon (Dr. Baron Lonner) and she said that he is one of the best surgeons out there and highly recommended him.

I have a second visit scheduled to this doctor on July 31st and hopefully I can talk more about surgery and what type of surgery he plans on doing. My mom is coming with me this time and this is her first time going to the doctor with me and I really hope she can get some relieve from hearing what the doctor will say. We are really close and I want them to support me because I need to have the surgery done.

So if someone can please tell me whether or not you had a similar experience where your parents were not supporting you. Also, I am very concerned about the fact that after surgery you are not as flexible as before surgery. I was told by all of the doctors I had seen that I am very flexible for my curves and that I may not be as flexible after surgery. I donít exactly understand what it really feels like not be so flexible and what are the types of things you are unable to do as a result of surgery? And lastly, I just want to know if anyone heard of this doctor or know anything about him.

I really appreciate your time for reading my story and hope someone can give me some advice.

07-25-2006, 01:49 PM
Mariya, welcome. I hope you will find the help you are looking for. I am not a doctor and can only speak from my own experience. I can't tell you whether or not to have surgery. That is a deciison for you, your doctor and your husband to make. My advice would be to meet with the surgeon you have in mind. If he is a scoliosis specialist, he should be able to advise you of your options. Have you tried conservative treatment methods i.e. physical therapy, steroid injections or pain medication? Most patients try to exhaust all possible treatment methods before considering surgery. As far as your parents are concerned, you are their child. They want the best for you I'm sure. If surgery becomes necessary, they will most likely come around. You are right, scoliosis surgery is big. There are serious risks associated with this type of surgery. Your surgeon can explain these to you so that you can make the best choice for yourself. As far as flexibility is concerned, you do lose some flexibility after a spinal fusion, particularly if you have a low fusion. That's the point of a fusion, really. They need to fuse the spine in order to stabilize it and prevent it from moving in the wrong direction. I had a spinal fusion in May. I was scared going into it. After reading all of the books, doing research on-line and joining this forum I was very prepared for surgery. It turns out that surgery was the best thing I could have ever done for myself. I feel better than I have in years and I don't regret it for a minute. You sound like an intelligent woman with a husband who loves you and supports you. I'm sure you will be o.k. Please keep us updated.

All the best,

07-25-2006, 02:27 PM
Hi Mariya :D

Welcome to the forum. I have found it to be a large emotional helper :) You asked what sort of things you may not be able to do, in terms of flexibility, after a fusion. I had my surgery when I was 12 (I am 24 also), and I was a very active kid, so it was hard for me to be restricted for so long afterward and not participate in gym class, etc. I don't remember exactly where my fusions are, but I also have Harrington rods. I'd say I mainly noticed a difference in my flexibility when it came to the sit ups they made us do in gym. I had done them there before my surgery, and suddenly I couldn't afterward! My back doesn't "roll"... if you've ever tried yoga or pilates, there are a number of positions where they ask you to roll your spine and make your back into an arch, and then roll back and forth. I can't do that... my back remains entirely straight and I can't curl my body forward like that. One plus... posture that people will compliment you for! ;)

Another side note... I can't sleep on a floor or any other very hard surface anymore. I wonder, does anyone else here have that problem? I still have a shoulder blade that sticks out and it's very difficult to lay on a hard, flat surface for even a few minutes. Maybe I shouldn't call it a problem... it's a great excuse to be a "princess" when you stay over somewhere... "I need the bed, I have a bad back!" :p

Best of luck Mariya!!

07-25-2006, 03:15 PM
Hi! Just noticing your story is similar to mine. Im 32 and my thoracic curve is 20 degrees and my lumbar curve is 40. First time Ive been given this measurement though. In the past Ive only been given one measurement of 65 degrees. Anyway, your curves are similar to mine and my pain too worsened after each child. Mine too are 2 and 3 1/2. Ive known that I needed surgery since I was 15. Then my curve was around 40 but progressed with bracing. Ive put it off forever due to pure fear mainly. I plan to have surgery in about 9 more months when my mom has summer vacation for her job so that she can help. Its really scary thought when you have little ones because you can do nothing to help! This is going to be difficult for them because mine want mommy to do everything! My mom is also not real supportive. Im suprised she will be helping me over the summer. But she will be getting paid. Im paying her to care for me, house and kids. Its better than having a stranger in my house, I think? However, she has never wanted me to go for surgery. Her sister, my aunt, has scoliosis and never had surgery and "does just fine". Also, when I told her I was worried about recovery she simply states "well, its not too late to change your mind". Good luck with
your decision and keep us posted!

07-25-2006, 03:51 PM

Just wanted to thank you so much for replying (I know my story was kind of long but I just wanted to say it all), it means so much that someone actually is out there and cares. I feel so much better knowing that some of you had successful surgeries and that you actually feel great. You are all very brave and I hope I can get through it like everyone and hopefully help others as well to overcome their fears about this type of surgery. This is truly a great way to just talk to others and ask as many questions and I'm glad I became part of it.

I am about to leave work and I have few more questions to ask so I will post it later tonight.

Thanks so much again,

07-25-2006, 09:00 PM

I met with three specialists all together and they all had said that I should have the surgey but after reading some of the other stories on this forum I noticed how some other patients with similar curves say that their doctors tell them to wait to see if the curve progresses but I was told that I need to have the surgery done. Since I tell them that pain is the biggest reason why I want to have a correction in my spine, I expected that doctors would at first tell me try some other non-surgical treatment for pain relieve and if I am still having pain then surgery is definately for me. Maybe I am wrong and just not sure whether any conservative treatment methods which you mentioned ( i.e. physical therapy, steroid injections or pain medication) would help because honestly I did not even try it. I know you said most patients try to exhaust all possible treatment methods before considering surgery but my husband tells me that if it really would have helped the scoliosis patients then no one would have surgeries. However, last week I had seen an osteopathic doctor of medicine for the same problem and he said that with osteopathic manipulation he can help relieve some of my pain but can not fix my curve. I thought that was great but my husband says that your curve may progress in hte future and that it is a solution but not a permanent one.

Also, since you are very well aware of the risks associated with this type of surgery, would you know any websites that offer statistical information on the outcomes of scoliosis surgery? I am very curious myself and would like to show it to my parents. In addition, can you tell me how did you decide to have the surgery done knowing the risks? How many visits did you have to your surgeon before you made up your mind?

You say that surgery was the best thing you could have ever done for yourself and you say you feel better than before. Do you really feel better already after having the surgery just two months ago? I mean its great to know that you are doing well so soon but would like to know whether you still experience any pain in the back?

Thanks again and hope to hear from you!

07-25-2006, 10:11 PM

Thanks for your response!! So you mean you can't do sit ups? That makes me a little worried because I can not imagine not doing sit ups or anything else that I can do now.

Also, I just want to know if you had any significant changes in your life after the surgery. Does your back feel different? Do you you feel good about how your back looks? Any pain at all and what about the scar?

Thanks Jen and hope to hear from you again!!


07-25-2006, 10:54 PM

Hi! Thanks for sharing your story with me. I actually read your story late last night and was so excited to find out about you and the similarity in our situations. Everything you said about yourself and your family is absolutely true for me too. This is so exciting that I even woke my husband up to tell him!! I thought it was so cute that our kids ages are the same as well. I have two girls and how about you?

I am just so frustrated lately and every little thing helps. Could you please tell me when do you feel the pain? I feel mine only if I do something but if I do nothing all day then I am fine. Weird but true...went on vacation two months ago and had no pain for three first days. On the fourth day I washed my hair and my back hurted the entire day. Since you are mother just like me how do you manage taking care of the little ones? Do you have help?

Like you I am also so scared and just feel helpless. I plan to have surgery in September. I am mostly worried about my kids because I am their mom and they need me. I love them more than anything in the world and I am the type of mom that tries to be with them all the time and spent a lot of time with them even though its really hard as I work full time. I guess for you it would be a little more difficult as far as taking care of the kids during the surgery and recovery. Does your mom live near you and does she usually come over often? My parents live close by and we see them at least once a week so my kids are attached to them also. What about their father do they want him sometimes to do things for them as well? Maybe they will need to get used to him taking care of them for a while. I know that when I was pregnant with my second daughter, my husband took care of her because I was really unable to do much.

Why is your mom not supportive of the surgery? Any reason or she is just worried about you and the surgery oucome? I do think that it is great that your mother would be able to be there with you and help out. I love my mom deary and when she is with me there is nothing in the world that I would rather have. She is very nice and very caring. I would recommend that you ask your mom to come over before surgery for a few days and to spend some time with you so that she can see how the kids eat, bath, and go to sleep. I would say that it is really important because kids have their own ways of doing things.

Another funny thing you mentioned about your aunt and her scoliosis and the way she has dealt with it. Well guess what my fathers sister has scoliosis and never did anyhting either. She is forty years old and a mother of two very young children as well and she is "doing just fine".

About your mom she is like every mom that is concerned and I don't think that I would have said to my daughter to go ahead for the surgery. I really am a very social person and I like to be around people a lot and everyone thinks that I look great, that I am healthy and they don't see a problem. A lot of friends and family question me about the surgery plans and it is startingto be annoying because they want to know everything about it and then they still tell you not to do it. I just think that they will never fully understand what scoliosis really is!

Let me know if there is anything you would like to know and hope to hear from you!!!


07-25-2006, 10:59 PM
I have a 55 degree lumbar curve and will be getting surgery in 5 weeks, when I type it it freaks me out because it seems more real. Pain drove me to surgery. My life is being controlled by this terrible pain. I was always active and now have trouble going to the mall. My son, stepdaughter and grand daughter went to the Mint in Philadelphia on Monday. When I came home I collapsed on the couch for two hours. My son is 11 and he will be in school. My family is very supportive and I consider myself very lucky. Good luck with your decision. It is a tough one.

07-26-2006, 07:37 AM
Hi Mariya,
My kids are boys and they too love Daddy and Mema (my mom). However, as long as I'm around they so no mommy do that! I have been trying to "train" them a little. My 2 year old loves being the baby and he likes to be carried and cuddled all the time. Then when he gets really clingy, the 3 year old chimes in too! I've been trying to tell him mommy's back hurts and we have to hold hands. As far as the pain goes there is not much rhyme or reason to it. I cannont stand still and one place for any amount of time. I'm usually OK if I'm moving. Also, its hard to lay still in bed. I constantly roll side to side because something starts hurting. Also, my back always hurts on holidays and birthdays because I cook and clean all day! The last month I've been getting intermittant neck pain and I can't figure that one out. Another thing that I did is order the scoliosis book mentioned in previous threads and I'm going to have my mom read it!

07-26-2006, 10:01 AM
Your pain sounds very similar to mine. I recently posted a thread asking how much pain is too much pain because I feel like since I/we live with pain most of the time, I'm not sure how to judge when there is too much pain to warrant surgery. It saddens me that we say we are ok if we don't do anything, but cleaning, going to parties, etc. will cause us pain and often put us literally flat on our backs for a while. Before going to a wedding or party, I feel like I worry about the upcoming pain and if I'm going to be able to sit down while talking to people, etc.

I really admire you and the others who have posted because you are going through this with children. I am 27 and married and am very nervous about having children without this surgery and then having to do the surgery when they are little. We want to start a family in 2-3 years and I guess I need to consider that in my decision. (I have a 55 degree thoracolumbar curve).

You all are very strong to have this surgery with children and I sincerely hope the love of your family will help get you through the recovery easier.

07-26-2006, 10:25 AM
Hi Jsully,

My 2 year is also a cute little bundle of joy and she is constantly asking me to play with her. I don't pick them up that much, I only pick them up for two seconds when I come home from work. Its really sad for me that I never got to hold them in my hands for longer as I see other moms do but at least I know that I am alsways there with them. Another thing I do is hold them and play with them while sitting down - it helps.

What do you do to control the pain? You mentioned a book on scoliosis, what is it? I would like to read it if was recommended!



07-26-2006, 11:08 AM

Just so you know I'm not ignoring you... I sent you a private message in response to your questions!! :)

07-26-2006, 12:33 PM
The book is called Scoliosis Surgery, The Definitive Patients Reference 2nd Edition, by David K. Wolpert. I haven't received it yet but heard it's a great book from these forums and amazon.com. As far as pain goes I take Motrin or Naproxen. I take anywhere from 2-4 200mg Motrin at one time (usually 3).
The Naproxen is 500mg. Long term use of these drugs has caused me to have a lot of heartburn. I do not know why I have not been able to get any pain pills from my DR. He just gives me the Napoxen. I've been thinking of asking him for a referral to a pain management DR. I think primary DR's are affraid to perscribe pain medications because so many people try do get them that don't need them.

07-26-2006, 12:48 PM

Thanks for the book I'll order it asap.

Unlike almost everyone that I read about I don't use any type of medication. Never even crossed my mind to take it. I only took motrin if I had a headache but that is it. I am starting to question my pain. I don't allow the pain to get severe because I avoid doing the things that cause the pain. Its mostly the cooking, cleaning and taking care of the kids that brings on the pain only in some parts of my back. I usually seek a massage from my husband or just lay down for a while and the pain is better. Since I am at work all day I don't do any lifting or standing up. So my pain is only bad on the weekends when I am home. But honetsly I can't deal with it anymore.

I haven't even tried physical therapy or anything out there to help my pain and don't know whether I should try it. I heard from others here on forum that it helps their pain a lot but as a busy mom and full time job I barely have time to take care of my back.

Did you try anything other than medication?



07-26-2006, 12:52 PM
I don't know how much pain is too much. I usually dismiss it and go about my daily routine. Rarely does pain keep me down. I'm just not the type of person who can sit around, regaurdless of the amount of pain I'm in. I think you just get used to living with it. This worries me too that after surgery I will try to do too much, too soon. I take Motrin or Naproxen daily, that helps. I also see a chiopractor which also helps. If pain was the only factor, I would probabally never have surgery. I didn't even realize the degree of my disfigurement till recently after viewing a home movie of our vacation. I just trained myself to believe for so long that I too was OK. I worry about the my curve causing organ failure and want to get this surgery over with while I'm fairly young and healthy. If you don't want kids for 2-3 years. I suggest having surgery now.
I wanted to have kids first. I know that it shouldn't be a problem after surgery but I was still concerned. I was scheduled to have surgery after my 1st child because the pain did get worse. Then found out I was pregnant with my 2nd. Which really was a blessing in disguise because I would have had to wait 2 years before trying again. My boys are only 16 months apart and I love that because they entertain each other quite a bit. Of course, they fight too, most of all they love each other!

07-26-2006, 07:25 PM
I sent you a PM. It is long and there are restrictions with regard to how many characters a post can contain... so I sent it in 3 parts. Hope it's not too lengthy. Feel free to contact me with any other questions.