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sweetgirl
08-10-2010, 11:54 PM
Dear all,

I am a 36 years old female. I was diagnosed of Scoliosis since I was 13 years old and was told that my curve degree was 34 at that time. I wore the brace for 5 years (wore it all day long except taking bath) and did not do any PT. I donít have any pain since then until 2006 when I was 32 years old. I cannot walk too long, otherwise my lower back will be pain. My shoulder also felt ache from time to time but it is not unendurable and I never take any pain medication.

After I delivered my baby in 2007, I felt like my pain get worse. My pain is intensified but seems like they just comes and goes. Some days really bother me a lot and some days donít feel anything. Apart from lower back, both my shoulders and my neck were in pain from time to time. I saw Dr Hostin at Baylor Scoliosis Center in Plano, TX in July this year. Dr. Hostin said that I am at marginal case of doing surgery but if I donít do it now, I will have to do it at age 50 the latest as my curve will continue to progress to a point that my health will get worse. I got information from this forum and have sent my X-rays to Dr Lagrone for 2nd opinion. I am still waiting for his reply. In the mean time, I would very much appreciate if any one of you can help answer some of my queries:


1. I am not sure if it is like Dr Hostin said that my curve will progress to a point that I will need to do surgery at age 50 if I dont do it now. He never see my X-ray when I was 13. He make this comment based on my X-ray in 2006 and 2010(July). Is it possible to make conclusion based on 2 X-rays 5 yeas apart?? How does your doctor judge whether your curve is progressing??

2. I have the thinking that if it is true that I need to do surgery later anyways, then I of course prefer to do it younger than older. But my pain is not really serious that I can do anything I want to except I dont like the cosmetic of my body. I am debating what if I get worse after surgery.....I am the type of person if there is a cut/bruise in my skin, the wound will take longer time to recover and even a small cut will leave scar. Does it mean I will recover slower and feel more pain after surgery??

3. I have a 3 years old that I need to take care. My hubby is concerned how long I can recover. Is it really 2 months cannot drive and 1 year to fully recover?? Will I be able to take care of my 3 years old after surgery?? We dont have any family around us can help....

4. Dr Hostin suggested to fuse T9-L3 of my spine. Will the spine above T9 has any problem if it is not fused?? What is the pros and cons of NOT fusing to sacrum??

5. I am very worry that for this kind of surgery, once I started, there will be never ending surgery.....under what situation will a person need 2nd and 3rd surgery?? Is this common??

6. Under what situation that a patient need to wear a brace after surgery?? How long has to wear it??

7. I already paid 75% of my insurance deductible this year and once I paid all the deductible, I will be covered 100% but I have additional $2500 out of pocket. I am thinking if I really have to do the surgery, it's better for me to do it before end of Dec from the financial point of view as if I do it next year, I have to pay the $2500 deductible again............I am again debating is this too rush to make such a big decision?? $5000 is a lot of money to us and we really dont want to pay it again.............even if we decide to do the surgery within this year, I am not sure if I have enough time to do all those pre-surgery testing and book the hospital. My next appointment with the Dr in early Sept.....Is there any case that after all those pre-surgery testing, they said someone is not suitable for surgery??

8. Anyone of you has experience with Dr Hostin?? Is he good?? Any other good doctor you can recommend in TX??

9. What is the possible complication of the surgery in the worse case??


I know I have many questions, hope that some of you will be kind enough to help answer my long list of question.....................thanks a million

JenniferG
08-11-2010, 01:13 AM
Welcome to the forum! I can't answer all your questions, but I will try to address the ones I have some knowledge/experience with.

--------------------------------------------------------------------------------


1. I am not sure if it is like Dr Hostin said that my curve will progress to a point that I will need to do surgery at age 50 if I dont do it now. He never see my X-ray when I was 13. He make this comment based on my X-ray in 2006 and 2010(July). Is it possible to make conclusion based on 2 X-rays 5 yeas apart?? How does your doctor judge whether your curve is progressing??

If your curves are progressing, I think the chances are, they will continue to progress. There are others here who can give you a more knowledgeable answer than me. But mine progressed extremely slowly over the years then increased rapidly after age 50.

2. I have the thinking that if it is true that I need to do surgery later anyways, then I of course prefer to do it younger than older. But my pain is not really serious that I can do anything I want to except I dont like the cosmetic of my body. I am debating what if I get worse after surgery.....I am the type of person if there is a cut/bruise in my skin, the wound will take longer time to recover and even a small cut will leave scar. Does it mean I will recover slower and feel more pain after surgery??

My pain was not serious either but it was worsening after age 50. My surgeon told me that my curves would continue progressing until I was in serious pain with increasing disability. It wasn't a problem at your age, but I wish I'd had my surgery then, even though I was very fortunate with my outcome. I feel if I'd had surgery at your age, I would have had an easier recovery/better correction. Having it younger, I would agree, is better than older. But it is still a big decision.

3. I have a 3 years old that I need to take care. My hubby is concerned how long I can recover. Is it really 2 months cannot drive and 1 year to fully recover?? Will I be able to take care of my 3 years old after surgery?? We dont have any family around us can help....

This will be difficult because you will be tempted to take care of your 3 y.o. and at least for the first 12 weeks, I don't believe you should. If your husband can't take time off work, can you put your child into daycare for the first 12-16 weeks? This is definitely something you need to make plans for, because you need to put all your energy into healing in those first months. There are other mothers here who have small children and they do seem to do too much. Which is completely understandable, but not ideal. Hopefully some of them will chat to you about what they can and can't do.

4. Dr Hostin suggested to fuse T9-L3 of my spine. Will the spine above T9 has any problem if it is not fused?? What is the pros and cons of NOT fusing to sacrum??

There are no guarantees. It will be interesting if you can get some feedback on Dr. Hostin. Is he an SRS surgeon? I am fused up to T4 and it's possible that if I lift lots of heavy things e.g. children, or run or do any activity that puts extra workload on the unfused section, it's possible that further surgery maybe required to those vertebra above my fusion. Therefore I avoid those activities where possible!

5. I am very worry that for this kind of surgery, once I started, there will be never ending surgery.....under what situation will a person need 2nd and 3rd surgery?? Is this common??

As long as you have a skilled surgeon who does a good job and you don't have any complications (most don't but some do), I believe you needn't expect to require revision surgery into the future. Again, no guarantees.

6. Under what situation that a patient need to wear a brace after surgery?? How long has to wear it??

This seems to be a personal preference of surgeons. Some seem to require it and the timeframes varies a lot, others don't. I didn't have one.

7. I already paid 75% of my insurance deductible this year and once I paid all the deductible, I will be covered 100% but I have additional $2500 out of pocket. I am thinking if I really have to do the surgery, it's better for me to do it before end of Dec from the financial point of view as if I do it next year, I have to pay the $2500 deductible again............I am again debating is this too rush to make such a big decision?? $5000 is a lot of money to us and we really dont want to pay it again.............even if we decide to do the surgery within this year, I am not sure if I have enough time to do all those pre-surgery testing and book the hospital. My next appointment with the Dr in early Sept.....Is there any case that after all those pre-surgery testing, they said someone is not suitable for surgery??

Take a list of questions like this one with you in September and ensure you get satisfactory answers to them all. If you get all your questions answered then your decision will be easier. I have heard of patients getting close to surgery date then doctors pulling out. He'd want to have a good reason to do that. I think it would be very rare for this to happen.

8. Anyone of you has experience with Dr Hostin?? Is he good?? Any other good doctor you can recommend in TX??

I hope you get some feedback from others in your area.

9. What is the possible complication of the surgery in the worse case??

It sounds scary, but there is a possibility of paralysis which I would consider the worst case scenario complication, but this is extremely rare. Infection is probably the most common complication according to my surgeon but it's also reasonably rare. Statistically, you have an excellent chance of coming through surgery with a great outcome, pain-wise and cosmetically and younger people have fewer complications than older people.

Getting the best possible surgeon would be my priority. One with plenty of current experience with adult scoliosis surgery. Talking to his patients would be good if possible. I asked, and was given the number of a woman who is a past patient of my surgeon. It was great talking with her. Wishing you the best of luck with your decision.

LindaRacine
08-11-2010, 10:45 PM
Hi...

Those are some really well thought out questions. See my responses below.

--Linda


Dear all,

I am a 36 years old female. I was diagnosed of Scoliosis since I was 13 years old and was told that my curve degree was 34 at that time. I wore the brace for 5 years (wore it all day long except taking bath) and did not do any PT. I don’t have any pain since then until 2006 when I was 32 years old. I cannot walk too long, otherwise my lower back will be pain. My shoulder also felt ache from time to time but it is not unendurable and I never take any pain medication.

After I delivered my baby in 2007, I felt like my pain get worse. My pain is intensified but seems like they just comes and goes. Some days really bother me a lot and some days don’t feel anything. Apart from lower back, both my shoulders and my neck were in pain from time to time. I saw Dr Hostin at Baylor Scoliosis Center in Plano, TX in July this year. Dr. Hostin said that I am at marginal case of doing surgery but if I don’t do it now, I will have to do it at age 50 the latest as my curve will continue to progress to a point that my health will get worse. I got information from this forum and have sent my X-rays to Dr Lagrone for 2nd opinion. I am still waiting for his reply. In the mean time, I would very much appreciate if any one of you can help answer some of my queries:


1. I am not sure if it is like Dr Hostin said that my curve will progress to a point that I will need to do surgery at age 50 if I dont do it now. He never see my X-ray when I was 13. He make this comment based on my X-ray in 2006 and 2010(July). Is it possible to make conclusion based on 2 X-rays 5 yeas apart?? How does your doctor judge whether your curve is progressing??

Yes, one could take the difference between the 2 sets of films and divide by 2, and assume that the curve(s) will progress that much each year. It's all still a guess, however.

2. I have the thinking that if it is true that I need to do surgery later anyways, then I of course prefer to do it younger than older. But my pain is not really serious that I can do anything I want to except I dont like the cosmetic of my body. I am debating what if I get worse after surgery.....I am the type of person if there is a cut/bruise in my skin, the wound will take longer time to recover and even a small cut will leave scar. Does it mean I will recover slower and feel more pain after surgery??
The cosmetic thing is definitely a factor you and your surgeon should consider. While it's not as important as pain or progression, it's important to you. I don't know if your history of slow healing will have any impact on the duration of postop pain.

I work in a spine center where a lot of scoliosis surgeries are done, mostly on adults. One of the things we've discussed a lot is that it seems that the patients with the least amount of pain going into surgery are often the patients who are not as pleased as the rest.

3. I have a 3 years old that I need to take care. My hubby is concerned how long I can recover. Is it really 2 months cannot drive and 1 year to fully recover?? Will I be able to take care of my 3 years old after surgery?? We dont have any family around us can help....

To me, this is a really good reason to put off surgery for several years. Taking care of a 3yo is definitely difficult when you're trying to recover from being hit by a truck. ;-)

4. Dr Hostin suggested to fuse T9-L3 of my spine. Will the spine above T9 has any problem if it is not fused?? What is the pros and cons of NOT fusing to sacrum??
The downside, if the lowest instrumented vertebra ends up not being level, is that you may be more prone to adjacent segment problems. The same problem can occur at the top end of your fusion

5. I am very worry that for this kind of surgery, once I started, there will be never ending surgery.....under what situation will a person need 2nd and 3rd surgery?? Is this common??
It's not unheard of. In my opinion, there is currently no good evidence one way or the other. There are long-term followup studies, but they include previous generations of implants that are not comparable to today's implants. And, short-term studies don't tell you what will happen in 10-20 years. Even if there were great studies, they would only tell you the experience of a single surgeon or a specific group of surgeons. They won't tell you about the revision rate for your own surgeon.

6. Under what situation that a patient need to wear a brace after surgery?? How long has to wear it??
It depends entirely on the surgeon. One of the surgeons I work for rarely puts his scoliosis patients in postop braces while another puts all of her scoliosis patients in postop braces. Either way, it's usually only for about 3 months.

7. I already paid 75% of my insurance deductible this year and once I paid all the deductible, I will be covered 100% but I have additional $2500 out of pocket. I am thinking if I really have to do the surgery, it's better for me to do it before end of Dec from the financial point of view as if I do it next year, I have to pay the $2500 deductible again............I am again debating is this too rush to make such a big decision?? $5000 is a lot of money to us and we really dont want to pay it again.............even if we decide to do the surgery within this year, I am not sure if I have enough time to do all those pre-surgery testing and book the hospital. My next appointment with the Dr in early Sept.....Is there any case that after all those pre-surgery testing, they said someone is not suitable for surgery??
Yes, occasionally patients are not good candidates, but it's rare.

8. Anyone of you has experience with Dr Hostin?? Is he good?? Any other good doctor you can recommend in TX??
Sorry, I know nothing about him.

9. What is the possible complication of the surgery in the worse case??
Death, or if that doesn't bother you, complete neurologic damage resulting in the patient being paralyzed. Those two things happen in less than .1% of scoliosis surgeries. The more common complications include infection, dural tears, and non-union of the fusion (pseudarthrosis).

I know I have many questions, hope that some of you will be kind enough to help answer my long list of question.....................thanks a million

JennyRN
08-11-2010, 11:51 PM
Hi. I figured I'd weigh in on some of your questions. I'm 30 years old and just had a spinal fusion of T3-L3 in June.




1. I am not sure if it is like Dr Hostin said that my curve will progress to a point that I will need to do surgery at age 50 if I dont do it now. He never see my X-ray when I was 13. He make this comment based on my X-ray in 2006 and 2010(July). Is it possible to make conclusion based on 2 X-rays 5 yeas apart?? How does your doctor judge whether your curve is progressing??

I was diagnosed at age 14 with two 45 degree curves. My surgeon wanted to operate then, but I said wait. He monitored me every year. In 2005, my upper curve was around 50 degrees and my lower was still around 45 degrees. My doctor said that most curves greater than 50 degrees will continue to progress, but he was comfortable monitoring me every 5 years. In January 2010, I went back (after 2 pregnancies) and my upper curve was 65 degrees. That was quite a change! When he did my surgery 6 months after that xray, he said that my upper curve was measuring 70 degrees.


3. I have a 3 years old that I need to take care. My hubby is concerned how long I can recover. Is it really 2 months cannot drive and 1 year to fully recover?? Will I be able to take care of my 3 years old after surgery?? We dont have any family around us can help....

I have a 4 year old daughter and a 21-month old son. I talked about my upcoming surgery for a few months in a very relaxed and simple way with my kids and we "practiced" them doing things to help. When I had my surgery, things weren't that big of a deal to them, because they were fairly prepared. I still can't lift them(at almost 2 monthes post-op), but they know they can climb up on my lap and I can hold them.

I am very blessed to live by both my family and my husband's family. We had someone keep the children and someone stay with me for the first 4 weeks. Even if we all stayed here at the house, we still had 2 people. It was probably overkill, but the kids always had attention and I think that helped them cope with the whole situation.

I'm still not driving, but I also had some complications and I have to return to surgery on Monday. If it weren't for that, I think I would be close to driving by now. My husband has been absolutely wonderful and has done most of the hands on child care (like baths and bedtime routines.) Our families have helped by doing laundry and grocery shopping.


5. I am very worry that for this kind of surgery, once I started, there will be never ending surgery.....under what situation will a person need 2nd and 3rd surgery?? Is this common??

A week and a half after my surgery, I had foul smelling drainage and my surgeon suspected an infection. I had a second surgery 12 days after the first to clean out my wound. There was also a part of a muscle that had "died" even though we weren't sure why. Just to be safe, he removed my bone graft then and I've been on IV antibiotics for since then. I go back in Monday for him to replace my bone graft. This is NOT common, though.


6. Under what situation that a patient need to wear a brace after surgery?? How long has to wear it??

I did not have to wear one.




I hope my answers help. I also hope it helps to know that I'm happy I had the surgery done. Good luck!

Shari
08-12-2010, 03:25 AM
JennyRN, Good to see you back!!!:)

Shari

Karen Ocker
08-12-2010, 01:45 PM
I got my life back.

sweetgirl
08-12-2010, 08:59 PM
Thanks JenniferG and JennyRN for all the advice and sharing.

My problem here is I dont get agreement from my hubby. He thinks that he knows scoliosis and I have no serious pain now, it is not necessary to do surgery. We had arguement on the surgery many times and he said that even he does not agree, he will still support my decision. Although he said that, he always complain that he has to do everything...his work is very busy and he can predict that he comes home even have to do all the housework after working 12 hours, he does not like it............He does not believe in the saying that "if I dont do the surgery now, I have to do it later anyways. Better do it younger than old".

My own family supports me but they are far away. So, I feel sad that my own hubby is not really supporting me. He even said I have nothing to do (I am a stay-at-home-mom) and just try to find some "project" to work on. I think this is NOT fair comment and all and this kind of accusation caused a lot of agruement between us. My hubby is basically someone dont like any trouble. I can predict that even I go ahead with my own decision, I will still have a lot of things to hear in the future. And if there is anything wrong in the surgery or my recovery, I can forsee that I will get all the blame...........

Feel really depressed and miserable now....................

Pooka1
08-12-2010, 09:36 PM
Oh wow, you are in a very hard situation.

Would it help if your husband came with you to the orthopedic surgeon so that he can ask questions? Then the surgeon can tell your husband what's correct and what's false and hopefully, your husband will then understand. We have had several testimonials here with family members who don't know a damn thing about scoliosis shaving strong opinions about the surgery. This, of course, is ridiculous.

You should not be put in-between your surgeon and your husband.

Good luck and stay strong.

Confusedmom
08-12-2010, 10:06 PM
1. I am not sure if it is like Dr Hostin said that my curve will progress to a point that I will need to do surgery at age 50 if I dont do it now.

Do you know what your degree is now? I think your doctor said you are a marginal case for surgery. I am 38 and am studying a lot of the same questions you are.

2. I am the type of person if there is a cut/bruise in my skin, the wound will take longer time to recover and even a small cut will leave scar. Does it mean I will recover slower and feel more pain after surgery??

The surgeons will do lots of pre-op testing on you to make sure you don't have any problems that would complicate surgery, like clotting problems. They will be aware if you have a tendency to bleed more than others and be prepared with lots of blood on hand, as well as recycling your own blood.

3. I have a 3 years old that I need to take care. We dont have any family around us can help....

This is the biggest reason I would suggest you think about waiting. I also have a three year old, well actually she turned four last week. I was planning surgery for this fall but after seeing everything people go through from this forum, I have decided to wait for a while--most likely until she is in school all day in a year or two. I am wondering if you could also wait a couple of years, since you are not in much pain. It would give you more time to research the surgery and in the meantime your child woudl mature, plus he/she would not be around during school hours, so you could rest.

4. What is the pros and cons of NOT fusing to sacrum??

I have been reading a lot about fusing to the sacrum vs. not. It sounds like you are not even a candidate for that. Usually the debate is if they have to stop at L5, should they go ahead to the sacrum (my situation)? If they can stop above L5, then they seem to do that to preserve more flexibility. Also there is some concern that fusions to the sacrum can fracture over time. On the other hand, fusion to the sacrum seems to reduce pain and instability in the lower back vs. fusing to L5. Some surgeons seem to think it is inevitable to fuse to the sacrum if you have to go to L5.

5. I am very worry that for this kind of surgery, once I started, there will be never ending surgery.....under what situation will a person need 2nd and 3rd surgery?? Is this common??

I feel exactly the same way. I read somewhere that about 25% of people who have spinal fusions for scoliosis eventually need additional (revision) surgery. You can look up stuff like this on pubmed (just Google "pubmed" and search for scoliosis and related terms).

6. Under what situation that a patient need to wear a brace after surgery?? How long has to wear it??

Personal preference of the doctor--usually about 3-6 months.

7. I already paid 75% of my insurance deductible this year and once I paid all the deductible, I will be covered 100% but I have additional $2500 out of pocket. I am thinking if I really have to do the surgery, it's better for me to do it before end of Dec from the financial point of view as if I do it next year, I have to pay the $2500 deductible again............I am again debating is this too rush to make such a big decision??

In my opinion, you shouldn't rush to make this decision. This is a major life-changing decision, and it is probably worth the additional financial burder to take your time making it.


8. Anyone of you has experience with Dr Hostin?? Is he good?? Any other good doctor you can recommend in TX??

Look him up on the Scoliosis Research Society website. Also you can search for his name on this site.

9. What is the possible complication of the surgery in the worse case??

People have mentioned death and paralysis. These are extremely rare complications. The ones I am most worried about are 1. the need for additional surgery because the spine doesn't fuse (pseudarthorsis) 2. chronic pain after the recovery period 3. infection that requires additional surgery and hospital stays.


I know I have many questions, hope that some of you will be kind enough to help answer my long list of question.....................thanks a million


Good luck with your decision-making. Reading this website will answer a lot of your questions.

Best,
Evelyn

titaniumed
08-12-2010, 11:21 PM
Welcome Sweetgirl!

You will need the support from your husband. If you can get him to go with you to visit your surgeon, that will help. If you cannot, then you will have to take it slow with him, give him time to absorb...I will repeat. Slow.

If he doesnít elect to go with you, then get a written statement from Dr Hostin. Explain this situation to Dr Hostin, see what he thinks. After you present this statement to your husband, just wait and give it time, donít argue about it anymore, he will think about it.....

If Dr Hostin says itís a marginal case, you have a 3 year old, and little support, it would be best to wait.

I waited 34 years after being a candidate in 1974. I waited for technology to improve, but mostly I was scared to death. Its serious surgery, its irreversible and my 2007 decision was based on MAJOR pain.

I used Chiropractic, massage, exercised, stretched etc to control my pain through the years. There are many alternatives you can use to "maintain" and continue on with your life.(Pilates, Yoga) I knew that I would need my surgery someday, it was something that I basically had to ignore, and continued on with my life. I refused to let scoliosis dominate my thoughts through the years....

I did come out pretty darn good and have very little pain. I donít know what to say about this, even the best of surgeons cant help avoiding complications sometimes...

All your ducks have to be in a row. The main thing is to have a positive attitude. Just remember, everything will be ok....One day at a time.
Keep posting!
Ed

sweetgirl
08-13-2010, 11:13 AM
Thanks everyone. Ed and Poka1, I think you are right. I need to get agreement from my hubby, otherwise, things will be difficult. Sometimes, although we think this surgery is very personal, to other extent, it affect the whole family so it is somewhat a family decision too.....

Confusedmom, thanks for the reply. I agree that for such a big decision, may be I should not rush too much, need to give it a little bit of time for myself and everyone in the family too. I got the book "scoliosis surgery" from David Wolpert. Will need to read on that.

Concerning my degree now, it is 55 lumbar according to Dr Hostin. He said my degree in 2006 based on the X-ray I provided is 50 so he think I am progressing 1 degree every year. The weired thing is I saw another doctor out-of-state in 2006 and he told me my degree is 30 in 2006 which is different from what Dr Hostin told me. I went through pregnancy in 2007 and if so, my curve progressed 25 degree after pregnancy. I am still waiting for a 2nd opinion from Dr Lagrone. I just dont understand why Dr Hostin did not do bending X-ray the 1st time I saw him. I think it's more accurate to do both straight X-ray and bending X-ray to see how flexible the spine is. Am I right?

Should it be the normal practice to have bending X-ray the 1st time see the surgeon??

Pooka1
08-13-2010, 11:40 AM
Should it be the normal practice to have bending X-ray the 1st time see the surgeon??

Linda and others will hopefully comment but the only reason I am aware of for doing bending radiographs is to identify what the lowest instrumented vertebrae should be for fusion.

If there is another reason that surgeons will expose a patient to radiation by shooting a bending film, I'm not aware of it. That is, I don't think just knowing curve flexibility is going to be relevant to your treatment (or anyone' treatment apart from fusion) but I may be wrong.

JennyRN
08-13-2010, 01:32 PM
My surgeon waited until 2 weeks prior to my surgery to do bending xrays to determine where it would be best to fuse and to determine the degree of correction he hoped to obtain. According to my surgeon, there is no need to do bending xrays for diagnostic purposes.

golfnut
08-13-2010, 02:18 PM
Welcome to the forum,
You had excellent questions and I appreciated reading the responses from our experienced ones from this forum. I hope you can gain your husband's support. When I was expressing some of my worries, my husband said, "Well, just don't do it." He will be going with me for my pre-op tests and meeting with my surgeon, so I think gaining knowledge will help. I want him to at least skim David Wolpert's book "Scoliosis Surgery". If you don't have it yet, I think it should be required reading prior to surgery. My husband hasn't tried to talk me out of it and I've told him I need his total support. I know this is going to change his life (and not in a fun way) for months following surgery with all of his extra duties. I have no other family here, but several friends who will help some. Good luck in making your decision. Maybe you can wait until your 3 year old is a little older.

JenniferG
08-13-2010, 04:54 PM
It's a difficult decision for you because you're damned if you do and damned if you don't. Your husband isn't supporting you yet he's complaining of the extra work he has to do around the house due to your pain.

Can you tolerate another few years of pain and your husband's complaining, or do you get it all over and done with now, without the support you need and deserve? It's a hard one. I think educating your husband might be the key.

Another thought: you say your family who live a long way from you, support you. If you go ahead with the surgery, could you have one of your family members come and live with you for 2-3 months? To ease the load on your husband and to ease your needing to care for your little one. Because when you think about it, if you had the surgery tomorrow, there's a good chance, providing there aren't complications, that you'd be living fairly normally again by Christmas with all this behind you. I know you can't have surgery immediately, but there are good reasons to have it younger than older. But I still think your husband needs educating and getting him onside first. Best wishes.

Karen Ocker
08-13-2010, 05:52 PM
Some family members are very unsupportive until they see the x-rays and then they gasp!!! This helps when some curves are not as obvious in clothes. Taking a digital photo can be a big help.

Pre-op, I was so deformed that no one in the family needed convincing.

We took a digital photo of my post-op x-rays to show my other physicians what my spine looks like now. I get a lot of respect.

Debra JGL
08-13-2010, 08:44 PM
Welcome to the forum Sweetgirl. I'm with Karen too, get a copy of your xrays to show your husband, if you haven't already. Pictures do speak louder than words when trying to help others understand what you're dealing with. I first starting considering having the surgery about 5 years ago when my kids were 5 and 8. I don't have much family support and decided that even though I wanted the surgery and physically I may get worse (and I did), I would wait until my kids were a little older. At that time I focused on getting into decent shape through yoga, swimming, pilates, losing 25 pounds- not to avoid surgery, but stay in good shape for when I was ready. This is a hard decision because there are pros and cons to waiting and also to having surgery now. But you're doing good things by asking great quesions, getting professional opinions, and considering your resources (people, money, health). One thing for sure you'll have support on the forum regardless of your decision. A mistake I made a couple of years ago is I felt that since I decided to not go ahead with surgery I didn't belong on the forum, but that wasn't true. There are alot of categories in which to stay involved and give and recieve support no matter what decisions you make along the way. Best of luck.

JenM
08-13-2010, 08:58 PM
Hi Sweetgirl-

Just wanted to let you know I had the surgery on June 8, so I am now 9 weeks post op. I have a 5 year old and a 3 year old. My curves increased about 10 degrees or something like that in about 2 years in between having my 2 kids, so I decided that now was the right time in my life to have the surgery even though my kids were young. THe pain was getting so bad and I was starting to get depressed. My grandma had curves that were 100 plus degrees. I knew if I didn't do anything now, I'd end up like her. I also went ahead and did it while my kids were young because I want to be able to eventually live an active life with them as they grew up. I didn't want to wait until they were 18 years old or so and realize I sat on the sidelines their entire lives. I used to put in alot of videos to watch because at the end of the day I was in so much pain I couldn't take care of them. They watched way too much tv because I always needed to rest my back during the day.

If you do go ahead with the surgery with your 3 year old, I recommend you hire a sitter. Since my husband works basically from 9am to 9pm at night, I hired a college sitter 3 days a week the entire summer (June 15 through Sept. 1) for 8 hours a day. The other 2 days a week my mom and sister watched the kids. They did fun things with them all summer long, like swimming everyday and going to the beach, etc. Even though it is a rough recovery with a 3 year old, I believe you can do it as long as you had the help. I actually got neck complications as a result of this surgery but now that I am 9 weeks I am realizing I'm glad I got the surgery(even with the complications)! It has made me feel so much better about myself. In one year, I lost about 60+ pounds (I really never lost the baby weight from my 2nd child 'cause of all the pain I was in)!! I also dropped about 25 to 30 pounds after the surgery. The meds they have you on made me loose my appettite. ANd now I am a healthy 125 pounds!!! Haven't been that skinny since high school! Feels great to have just bought size 4 jeans and to have a straight back. I now love clothes shopping and I hated it before! Again, as a young mother, it feels SO great not to feel crooked. Now I just wish my neck problems would go away, but every week they are sloooowly getting better.

I also did the surgery now that my kids are so young because I realized the older they are, the more they are involved in sports and after school activities. You basically become a "soccer mom," driving them everywhere with all of their activities. It started with my son this past spring with t-ball and swimming and school and playdates. So basically my kids took the summer off of everything this year and just had fun with my sitter and my mom and sister. It was one summer and I'm sure they'll forget most of it since they are so young. I would say go for it, even though you have a 3 year old. Just make sure you have lots of help!! You can send me a private message if you have any other questions! By the way, I didn't have alot of support with my decision to go ahead and get the surgery either. My husband was about the only one who supported me. Everyone in my family said since my grandma lived until 83 without the surgery, then I should have been able to live life without doing the surgery too. I am very upset about their attitudes, especially since I am so close to them. Still hurts me to this day that I had no family support to do the surgery.

Anyway, Best of luck in your decision!!

JenM

sweetgirl
08-17-2010, 12:05 AM
I am so touched with all the good suggestions and supportive words. Although I am new to this forum, I already love it so much!!! :)

Thanks JenM for your sharing. I myself also prefer to do the surgery ASAP with all the consideration I have taken into. One big issue is also money. I have insurance right now which covers everything after deductible. Who knows 2-5 years later whether I still have insurance?? There are so much unknown in this world that I think even 2 years is too long to predict.

I successfully persuaded my husband to come to the doctor visit with me. Hopefully, that will help persuade him. He has said that he wants me to wait 5 years more. I think it is too long....hopefully, we will have agreement after all.

Just got reply from Dr LaGrone. He is very nice to reply my letter and sent back all my X-rays. One thing that surprise me is he said my curve in 2006 is 53 while in 2010 is 54 so it means there is NO progress in 5 years!!!! Dr Hostin said my degree was 50 five years ago while it is 55 now. I dont know why there is such difference in the measurement of the degree....My hubby read the reply letter and quoted Dr LaGrone said it is NOT urgent for me to do the surgery.

It's just very confusing why different doctors will have different measurement. Without knowing how rapid my curve is progressing, I feel like I am missing an important piece of information. I am also wondering how my pregnancy in 2007 did not affect my curve at all. Visually, I think my curve is worst than before I got pregnant.......

Any thinking and advice?? Thanks so much

sweetgirl
08-17-2010, 12:21 AM
Should I get a 3rd opinion?? I have researched on the review and reputation of the doctors in Dallas who is under the SRS list. Seems like Dr Hostin is the only option (he does NOT have much review on-line or in this forum) while other doctors dont have good review. Dr Lagrone is NOT in Dallas but he is highly recommended in this forum. If I have to get a 3rd opinion, I have to travel to other place. I dont think I can do out of state consultation......On the other hand, I think if my curve is over 50, it means it will progress at least 1-2 degree every year so it means a surgery is necessary anyways. In this case, I dont need to really know the progression??????????? How important to know this piece of information???

Picking the right doctor is also quite tough for me now. I got 3 contacts from Dr Hostin office. These people had surgery by Dr Hostin and they suggested me to talk to them. I think of course they will say good thing about Dr Hostin and that's why they gave me these contacts. Should I regard these 3 contacts as a big support that Dr Hostin is a good doctor?? It is difficult to make a decision on the doctor who dont have many review while there is NO other doctor has good review in Dallas. I have to drive 6-7 hours to Dr Lagrone office and I dont think I can get out-of-state....any advice on this?????

Confusedmom
08-17-2010, 09:05 PM
Without knowing how rapid my curve is progressing, I feel like I am missing an important piece of information. I am also wondering how my pregnancy in 2007 did not affect my curve at all. Visually, I think my curve is worst than before I got pregnant.......

Some thoughts...I was at the 55 degree mark for several years. You're right that many docs choose 50 as the cutoff for surgery (some go higher), the idea being that after you hit 50 degrees the probability of progression is strong. Nonetheless, my main scoli doctor wouldn't even consider surgery until he could document without a doubt that I was progressing. This took about three years, until he could see even when including margin of error I was progressing. It would have taken even longer had I not had an older xray to show him. At any rate, if you are not progressing, you might not need surgery ever, so it probably is worth waiting to find out. Do you have any older xrays you can look at? I remember saying to my doctor: "Is it possible that I progressed from 33 degrees at age 22 to 55 degrees at age 35 and then stopped progressing?" He said YES, it's possible, that's why they had to get xrays that documented progression beyond the 5-degree margin of error. When I finally hit 67 degrees he said it absolutely documented progression. Before that there was the possibility that the 55 degree xray was actually 60* and the 65* one was actually 60, as well. Sorry, I know this is confusing. Bottom line is that sometimes doctors want to watch you, xraying the curve every 6-12 months until they document progression.

One more thing to consider, if you feel/look worse after pregnancy it could be additional rotation, not the Cobb angle, and rotation isn't measured on an xray. I believe that happened to me--lot my pregnancy weight and suddenly noticed a rib hump.

Evelyn

sweetgirl
08-17-2010, 11:47 PM
Thanks for your info. Does that mean a curve will be NOT progressing and then suddenly progress again?? My X ray in 2006 is the only older X-ray I have available as I did not monitor my curve regularly. I now understand why the doctor said I am marginal case of surgery as they dont see much progression but I have over 50 curve??

btw, what is "additional rotation"?? Thanks :)

Pooka1
08-18-2010, 09:32 AM
Thanks for your info. Does that mean a curve will be NOT progressing and then suddenly progress again?? My X ray in 2006 is the only older X-ray I have available as I did not monitor my curve regularly. I now understand why the doctor said I am marginal case of surgery as they dont see much progression but I have over 50 curve??

That was a great testimonial from Confusedmom demonstrating that just hitting 50* is not a cause to rush to sugery as you might read on certain chiro sites. It is hitting that threshold PLUS evidence of recent (real-time) progression.

As for starting and stopping progression, if kids in growth spurts can have curves that start and stop on their own (as was the case for my one daughter) then it is no stretch to suggest adults can. We have other cases here of folks reaching ~50* and hanging there for decades in one case.


btw, what is "additional rotation"?? Thanks :)

I am not so sure spines will rotate more in the absence of increased Cobb angle. If a surgeon has documented it then okay.

naptown78
08-18-2010, 12:13 PM
Should I get a 3rd opinion?? I have researched on the review and reputation of the doctors in Dallas who is under the SRS list. Seems like Dr Hostin is the only option (he does NOT have much review on-line or in this forum) while other doctors dont have good review. Dr Lagrone is NOT in Dallas but he is highly recommended in this forum. If I have to get a 3rd opinion, I have to travel to other place. I dont think I can do out of state consultation......On the other hand, I think if my curve is over 50, it means it will progress at least 1-2 degree every year so it means a surgery is necessary anyways. In this case, I dont need to really know the progression??????????? How important to know this piece of information???

Picking the right doctor is also quite tough for me now. I got 3 contacts from Dr Hostin office. These people had surgery by Dr Hostin and they suggested me to talk to them. I think of course they will say good thing about Dr Hostin and that's why they gave me these contacts. Should I regard these 3 contacts as a big support that Dr Hostin is a good doctor?? It is difficult to make a decision on the doctor who dont have many review while there is NO other doctor has good review in Dallas. I have to drive 6-7 hours to Dr Lagrone office and I dont think I can get out-of-state....any advice on this?????

Sweetgirl,
You haven't mentioned your pain/disability situation...it seems your case for progression is iffy due to the margin for error built into the measuring system. Are you having any pain or functional disability? If not, and if it were me, I would certainly wait and see what happens with yearly xrays. It would give you a chance to do more research, as well as your hubby, and in the meantime your daughter would be getting older. My hubby was very very supportive during my 2 surgeries and I can't imagine going through this huge surgery without that. I hope yours can come to see how this is your decision and only yours! As for bending xrays, I never had any...

sweetgirl
08-18-2010, 04:11 PM
You are right! I feel so bad that I dont have hubby's support. I cant imagine I can do the surgery without his support because he is the one who live with me day-to-day. But his attitude changed now and I think we will have an agreement after the next doctor visit

I have some pain on my neck, lower back and shoulders. But they are like comes and goes. I figured that if I dont have any exercise for a few days OR dont have enough sleep, that's when my bone/muscles has the biggest pain. The muscles is always tense esp at my neck and lower back everyday. It's just that my pain is NOT unendurable. I dont have to take any pain medicine. I have to keep stretching, swimming and try to have enough sleep

mbeckoff
08-19-2010, 10:05 AM
I am 51 years old and had my surgery May 4th and am fused T3 to S1.

It is a very hard , long and tiring recovery time when you are older. Youth certainly

has its advantages


Melissa

Confusedmom
08-19-2010, 08:24 PM
Thanks for your info. Does that mean a curve will be NOT progressing and then suddenly progress again?? My X ray in 2006 is the only older X-ray I have available as I did not monitor my curve regularly. I now understand why the doctor said I am marginal case of surgery as they dont see much progression but I have over 50 curve??

btw, what is "additional rotation"?? Thanks :)

Hi Sweetgirl,

Glad to hear your husband is starting to come around.

Yes, I have been told that a curve can be not progressing and then start to progress again. Dr. Bridwell's nurse Bernie told me that specifically as a reason to have the surgery (even if my curve stopped progressing).

Rotation basically refers to how much your spine is twisted around. In addition to bending left to right, many scolis have spines that rotate (picture a corkscrew). I believe this is what causes the rib humps. I don't know if this happens in the absence of Cobb angle progression, but I do know that my rib hump seemed to get dramatically worse in a span of a year or two when my Cobb angle was progressing only 1-2 degrees per year. You can ask your doc if you have rotation and how much they think you have.

Evelyn