Need Advice

[leviwood]

Hi,
I am new to the forum and would love any advice that I can get. My mother has struggled with scoliosis her entire life. She is now 52 years old and on the verge hof planning her surgery. Her curvature is about 65 degrees at this point and her specialist claims that it has increased 8 degrees in just two years. After all this time she has decided that it is necessary to have the spinal cord fusion surgery. In my attempt to get as much information for her as possible I have been looking at forums for information about people her age who have had this surgery. What I have found has been unsettling. It seems that everyone has had bad experiences and that one surgery never seems to cut it. I am hearing lots of stories of multiple surgeries, broken rods, and pain. I don't know how to advise my my mother to proceed. I would greatly appreciate any advice or personal stories that people could provide me with. Thank you so much to anyone who can help

[Karen Ocker]

52 year old with worsening scoliosis

[QUOTE]

Hi,
What I have found has been unsettling. It seems that everyone has had bad experiences and that one surgery never seems to cut it. I am hearing lots of stories of multiple surgeries, broken rods, and extreme pain. QUOTE]

Though there are no guarantees, with a good, experienced, ADULT scoliosis specialist, a good outcome is probable.

I do not know where you got the info about "everyone" having this type of surgery has "bad' experiences".
Some, older types of surgery, done many years ago, with Harrington rods, resulted in the spine being too straight from the side, causing undue stress on the other vertebrae and joints. Some of these people needed "redos" (revisions)--with good results in most cases.

In my case, I had an old form of surgery, not using rods; over 40+ years I lost that modest correction because the fusion weakened. I had a successful revision and significant curve reduction-back at work and pain free.

Try not to listen to ignorant, fear-mongers. Gather accurate info and go from there.

I sent you a private message.
Karen

[mattie]

need advice

I say the same thing. Find a good Dr. and have your mother go for it.
I am one of the unlikely people to have to have revision done. Not everyone does I am sure. I was first diagnosed with scoliosis 30 years ago. I let it go until I had lots of pain and could not work. I had seen specialists in the past but noone would do anything for me. I got on the right track and now after my surgeries I feel lots better. It has been 4 months since my last surgery and I am off of all pain medication, which I never took a lot of anyway. I am in PT and I feel pretty good and am a lot straighter also. Your mother has to chose on her own but any advice that I can give you or her I will be more than glad to do. I was very scared to have my surgery but now I am glad I did. The surgeries were not the easist things I've been through but now it's over and I am better.
Tell your mother good luck from me and I hope everything turns out for the best..........Mattie

[csbaby]

Personal story in answer to your request for advice.

Leviwood

Hi,
My mother has struggled with scoliosis her entire life. She is now 52 years old and on the verge hof planning her surgery. Her curvature is about 65 degrees at this point and her specialist claims that it has increased 8 degrees in just two years. After all this time she has decided that it is necessary to have the spinal cord fusion surgery. What I have found has been unsettling. It seems that everyone has had bad experiences and that one surgery never seems to cut it. I am hearing lots of stories of multiple surgeries, broken rods, and extreme pain. I don't know how to advise my my mother to proceed. I would greatly appreciate any advice or personal stories that people could provide me with. Thank you so much to anyone who can help

Hi Leviwood - as you can see from my signature line, I have undergone multiple surgeries over the last 4 years. Any surgery - especially back surgery - is going to be unsettling. Scoliosis is one of the most complicated and complex surgeries performed these days. But the surgical procedures and options have improved dramatically over the years and continue to do so. I do want to clarify something you said in your post - Your mother is considering spinal fusion, not spinal cord fusion. The surgeons protect the spinal cord at all costs and it is only the bony part of the spine that is fused.

I lived with my severe scoliosis all my life up until I fell in 2000. Surgery was recommended when I was a teen and at that time, I had curves in the 70 degree range. I was able to control the pain through keeping as healthy as possible, movement, muscle strengthening, and just being "young" in general. But surgery was inevitable for me as time progressed. I didn't want to do it - ever. But from my fall in 2000, the pain would not go away. I needed to take action.

I went to see a highly recommended orthopedic specialist, just wanting him to fix the pain from the fall and leave the whole scoliosis thing alone. He listened to me, and likewise, I listened to him. Given the degree of curvature I now had, my future health outlook was grim. My spine was twisting, my ribs were nearly resting on my hip bones, my curves were progressing - I needed to do something. I tried yoga, pilates, and body strengthening. I thought about what this surgeon said for about year, and then I went back and said - let's do it. I wasn’t getting any better on my own – I needed surgical intervention.

Your mom has probably been having similar thought patterns, wondering what the future holds and what to do. No one's curvature is the same. You didn’t go into much detail about her scoliosis. Does she just have the one curve? Additionally, her overall physical health is going to come into play too. Hopefully she is a non-smoker, as most surgeons will not even operate on smokers. If she is a smoker – QUIT NOW. Is she height/weight proportionate? I was about 20# over weight and still haven't been able to lose those pounds. Of course, I have limited mobility due to the pain associated with my scoliosis. I believe that I am going to be able to start dancing soon though. And if I could get my butt over to the health club more, I know it would benefit me greatly by increasing my aerobic endurance, building muscle, etc. I do walk daily - but I could do more. Have dog – must walk!! She is my therapy dog. I got her 1 month after my second surgery – so I am not allowed to just sit around - I have to walk the dog 3-7 times a day.

So prior to going in for surgery, get in the best physical condition possible. Squats are great, because bending will be out. Strengthen the leg muscles, because they will become her workhorses. Her body will be undergoing extensive stress, so study up on nutrition and what your body needs to endure a surgery like this. Protein is very important because it necessary for building and repairing the body, so providing her body with extra protein for up to 6 weeks prior to surgery would help the healing process. Additionally, a good vitamin B complex and lots of vitamin C will help with the overall stress and healing too. (This supplements should be continued afterwards too). I suggest you research nutrition on your own as I am no medical professional.

Get the best surgeon you can. Research. Get second opinions. Her relationship with her surgeon is going to be key in her recovery. Her level of comfort in asking those tough questions and getting answers she understands is very important. Trust is crucial.

So why am I saying all this, especially when your email expressed concerns about multiple surgeries, etc. My first surgery (3/02) was huge, reconstructive, etc. I was in the hospital 9 days, then moved to a rehab hospital for 9 more days. Rehab is highly recommended! But I fell a week after I got home from the rehab hospital and I wasn't wearing my brace! I went back to work part-time after 12 weeks off, then full-time, then over-time. Aside from the fall, I attempted to do too much too soon following such a huge surgery. I never regained my energy level. I was hurting too much because I never fully recovered. No wonder I was so exhausted all the time. Something had to be wrong, so I eventually decided to have more surgery (7/04). They found 6 areas of non-union in my fusion and fused one more level down, adding a cage at L4. All that time, I was walking around all that time unfused.

Back to the "individual nature" of each scoliosis patient. I went back to work again after my 12 weeks FMLA for my second surgery. I developed additional pain in my lower back and numbness and pain in my left leg. What was wrong now? As it turned out, I had other "individual" medical issues contributing to my back pain. In addition to being 20-30 pounds overweight, I also had DDD, osteoarthritis, osteopenia,. So it wasn't just the scoliosis or the surgeries causing my pain and prohibiting full recovery. And believe it or not, I slipped and fell 3 other times outside following my second surgery. I didn't fall hard each time, but I did hit the ground in all three cases. The first fall, I wasn't watching where my feet were landing, and I was half on/half off the sidewalk. The second fall, I was wearing the wrong shoes and slipped down a slight grassy incline. And the third fall was like the second. I threw away those shoes right then and there.

On 12/15/05, I went back in for surgery to fuse the 2 remaining discs that still "moved". Since these two discs were bearing the brunt of all my body's mechanical stress, their health deteriorated rapidly. And they were greatly impacted by the osteoarthritis and DDD. I am now about 10 weeks out from that surgery and can tell that whatever my surgical team did, it has helped tremendously. It's still a big surgery and in reality, one does not completely recover in the 6-12 weeks - emphasis on the word "completely". But I am feeling better than I have in a long time - no leg pain, no lower back pain due to osteoarthritis or ddd. I do have one problem which needs surgical repair and that is a loose screw in my pelvis. It isn't causing me much trouble, but just the thought of it being loose and having the potential to cause other damage is making the decision for me. I only feel something "wrong" when I get into a certain position, so I am getting that repaired on 2/27/06, and then I am moving on with my life. I anticipate good health and mobility from then on out. I am going to be dancing again soon.

Leviwood - you are wondering how to advise your mother. Tell her that her scoliosis is unique to her (you didn't mention what type of curve or location of curve, and this does make a big difference in the surgical procedures done). Advise her to get as healthy as possible, nutritionally and physically (abdominal strengthening is key). She also needs a strong emotional support base - don't let her be a martyr. Help as much as possible. When she is in the hospital, I highly recommend a family member be there with her 24/7 if at all possible. A private room generally has a pull out chair, etc for someone to rest in. Research her specialist. Get a second opinion. Ask tons of questions. And make sure you understand the answers. If not, keep asking.

Back surgeries are tough on the patient and the whole family. Multiple surgeries may be required because unfortunately things can go wrong. In my case, it was more than likely my overall physical condition and the fact that I fell several times that contributed to my multiple surgeries. However, while I continue to completely trust my surgeon, I take responsibility for my own recovery and health. Doctors are not miracle workers, they are trained professionals practicing medicine and learning daily.

And most importantly, prayer is so important. It gives one someone to talk to when no one else is there or has the answers or understands what we are feeling or why we are feeling the way we are feeling. Sometimes there are no answers, but there is always hope.

My best to you and your mom. And if you want to commicate further, please feel free to contact me through private post.
Christy

[sweetness514]

Hi,
I am new to the forum and would love any advice that I can get. My mother has struggled with scoliosis her entire life. She is now 52 years old and on the verge hof planning her surgery. Her curvature is about 65 degrees at this point and her specialist claims that it has increased 8 degrees in just two years. After all this time she has decided that it is necessary to have the spinal cord fusion surgery. In my attempt to get as much information for her as possible I have been looking at forums for information about people her age who have had this surgery. What I have found has been unsettling. It seems that everyone has had bad experiences and that one surgery never seems to cut it. I am hearing lots of stories of multiple surgeries, broken rods, and extreme pain. I don't know how to advise my my mother to proceed. I would greatly appreciate any advice or personal stories that people could provide me with. Thank you so much to anyone who can help

I think it's good that you know all the pros and cons, an the reality of any type of back surgery. I am at my third surgery, the latest for a broken rod and fusion. I'm recuperating and off the pills, actually I only took them for a few weeks and I'm at month two post op. The restrictions and recuperations are hard, but in my case I had a 60 degree curve and IMO that was a choice that was already made for me, since waiting more would have caused me more pain and maybe death at some point. My ortho was realistic and one of the top doctors in the world at the time, he told me that he could not guarantee anything as far as pain. I do wish he would have told me about revision surgeries and what COULD happen but you know since you read forums. If I had a choice to live with my scoliosis with little pain and my flexible self, I would but the pain STARTED to get too much and I took the surgery road before I would get worst. I do miss my old flexibility, as I was HIGHLY flexible but not all people are the way I was before surgery. In my case one area didn't fuse, and they don't know why- it happens. Every scoliosis case is different, and so is the outcome, just like with most diseases anyways.

Good luck, and choose wisely as far as doctors.