View Full Version : So glad I found this site!

08-22-2013, 03:13 PM
I have been reading your posts for a couple of months now and have learned so much about Scoliosis.
I have had upper and lower back pain for years and have always been told this was caused by arthritis. The last few years I was having more and more difficulties walking. Nov. 2012 my doctor send me for a cat scan and the results showed I have 3 herniated disks. He told me to try a Physio therapist or chiropractor for relief as there was nothing he could do for me. I also go to aqua size which seems to help more then anything else.
I asked my doctor to refer me to a spine specialist, he was reluctant to do so as he did not think they could do anything for me. You will need a MRI first and then we will see. I was then send to a Neurosurgeon in Mississauga (Toronto area). He said you are very Scoliotic, the MRI shows rotoscoliosis, subluxation and spinal stenosis.
He said I would need extensive instrumental spinal fusion and decompression.
Then he said he would not be able to do this surgery and made an appt. with his colleague also a neurosurgeon.
This was the first time I found out I had scoliosis.
The second surgeon agreed with the first and said because of the significant scoliosis he could also not operate on me and send me to third doctor.
He is a scoliosis spine specialist, my appt. with him is Oct. 8th.
I have since been reading a lot also purchase David Wolpert's book as suggested on several posts.
I wondered if there were any members from the Toronto area. I live in Muskoka about 3 hours north of Toronto.
Thanks for all your help for now, it has been an eye opener reading on this site.

08-22-2013, 07:01 PM
Hi Marianne!

I've been on this site for just a few months & I'm finding a wealth of information, too! I'm going back and reading lots of the old threads, too.


08-22-2013, 08:20 PM
Thank you for replying to my thread, I am so sorry to read about your motorcycle accident. I hope you and your husband are making out all right. I am sure you would have liked to get your surgery over and done with.
Wishing you all the best.

08-23-2013, 06:19 AM
I don't know what I would have done without the wonderful people from this forum before and after my surgery. You will not only find information about scoliosis, but get emotional support as well.

08-23-2013, 10:32 PM
I don't know what I would have done without the wonderful people from this forum before and after my surgery. You will not only find information about scoliosis, but get emotional support as well.

Your golf video is amazing, hard to believe you can move like that after the surgery you have had.

08-23-2013, 11:39 PM
When I look at the video, I am amazed at how different I swing now than when I was 15 months post-op. That video was my first attempt at golf after 15 months of not doing any twisting, bending, etc. Now, my swing is much more fluid and faster than when the video was taken. I am only saying that so that people know that for most of us, everything gets so much better, even after 2 years. I truly believe that most people do not continue to post when they are doing great because they just get busy moving on with their life. I am busy, but feel that I owe it to others to encourage them based upon my experiences. I have won two tournaments and had a hole-in-one since my spinal fusion in January of 2011. I never would have dreamed it was possible.

08-24-2013, 07:47 AM
I am thankful to those of you that do post after succesful surgery, we can learn so much from from your post and know what to expect. Congratulations on your hole in one that must have been exciting. I am not a golfer but my husband, son and daughter and family all golf. We just had a family golf weekend here, about 25 adults and 12 kids. Lots of fun it is an annual weekend for us.

08-24-2013, 10:22 PM

Welcome! Most of us on this site who've had long fusions for scoliosis go to orthopedic surgeons. Ideally, you want someone who is trained specifically in scoliosis surgery and is a member of the Scoliosis Research Society. It's very important to get a surgeon who does these surgeries regularly, even if that means traveling for surgery.

Best wishes,

08-28-2013, 06:47 AM
The surgeon I am seeing Oct. 8th is an Orthopedic Surgeon who specializes in scoliosis.His name is Dr. Dana Wilson, I wondered if anyone on the forum knows him. Is there anything specific I should be asking him about. This is all so new to me and I am very nervous about the whole thing. My pain seems to be getting worse all the time. And I am having great difficulties walking.

08-29-2013, 04:06 AM
Marianne: Welcome! I believe that the book on scoliosis has questions. Is the doctor a member of the SRS? How many surgeries on older persons w/ disc repairs does he do in a month/year? That was important to me since I am also an older person w/ no previous back surgery and my main problem was disc degeneration and stenosis.

There are lots of threads w/ questions to ask....just review them and then make your own list.


08-29-2013, 06:41 PM
Susan, thank you for the information. You have had a lot to deal with yourself and now have to have another operation.
I wish you all the best and will be thinking about you.

08-29-2013, 07:07 PM
Hi Marianne!
I agree with Evelyn & Susan's recommendations. Even if I might have a 'textbook' scoliosis case, I want a doctor with lots of experience to draw from, in case of complications! In fact, it's due to the great information on this board that I'm searching for a new surgeon. I'm considering traveling.
Some of my less important questions were about wearing a brace & rehab. I also asked about the length of the surgery. I've gotten most of my information about what to expect in recovery from this site.
Based on your diagnosis date, you really haven't had much time to absorb the whole idea of this major surgery. I'm 59 & my doctors have been talking about scoliosis surgery for the past 9 years. I finally decided to have the surgery this fall, but instead I'm recovering from a motorcycle accident. The blessing in disguise was finding this board & understanding that I need a more experienced surgeon. Perhaps surgery will be this spring.

08-30-2013, 06:45 PM
Yes you are right, I am still trying to absorb the idea of this major surgery. I will see Dr. Wilson and ask lots of questions as you all sugested and go from there.
I hope you are recovering from your accident and wishing you well.

08-30-2013, 08:11 PM
Susan, thank you for the information. You have had a lot to deal with yourself and now have to have another operation.
I wish you all the best and will be thinking about you.

Thanks for your well wishes. Major surgery is a craps shoot, especially for us older persons. Almost everyone that I know had some problem postop, most of them minor.

Inspite of some minor problems and one major one, that of my hernia repair, I would have the surgery all over again. I am a fairly healthy woman and the prospect of increasing problems with multiple disc problems and stenotic discs was the tipping point in my decision. I did quite a bit physically before my surgery as I had lots of minor procedures done. Then, they all wore off and I had to face the music.

My thread details my decision and indecision. It is a journey. The recovery seems to take longer that you want. Line up your help. I went to a rehab hospital for a week and that was a good decision for me. I remember almost nothing of the 10 days after surgery in the surgical hospital.

I wish you well. The main factor in surgery is having confidence/trust in your surgeon. I did and was phenomenally relaxed going into both surgeries.

Hugs to you, Susan
If you want to talk on the phone, send me a PM and I will give you my email and phone number.

08-30-2013, 11:47 PM
hi Marianne
i read your posts but did not see mention of how big your curves
are, where they are....where it was suggested the fusion start and end...
have you discussed whether you have any options...?
if there is any choice of how far to extend the fusion, it can help
to get more than one opinion from more than one top surgeon.

you might want to discuss whether you could have a minimally invasive approach...there is a surgeon in CA...at Cedars Sinai...who believes minimally invasive approach can be used for just about everybody, regardless of where the curves are located...

you might want to ask whether the surgeon is recommending one metal be used over another metal....and why...
how much curve reduction could you look forward to...
and what does the surgeon think about reduction in your pain levels,
after healing is complete.

in general, when it comes to any kind of surgery, i know some people would rather not know all there is to know about what will happen in the operating room, and afterwards...depending on what surgery they need...
but i think that the more the patient knows...and knows to ask questions about...the better...

best of luck...

08-31-2013, 10:34 AM
I do not know how big my curves are, the two Doctors I have seen so far only mentioned it being an S curve. And not having any other option then to have surgery.Since neither one operate on patients with Scoliosis I did not ask any more questions.I really did not know much about Scoliosis till I started reading on this site. I will have lots of questions when I go to see Dr. Wilson in October, thanks to all of you on this forum.
I have been reading your threads and see you are in a lot of pain. Wishing you all the best and thanks for taking the time to respond to me.

09-01-2013, 04:24 AM
hi Marianne...
i meant the option of how big a fusion you need...
whether there is any choice about how are down the fusion
needs to be...

the good thing is that you now have time to compile a list of questions
for the appointment in October


09-01-2013, 07:47 AM
That question is on my list to ask, so will know a lot more after my October appt.

09-04-2013, 01:44 AM
Marianne, Great to talk with you today. Sorry that the connection was so poor. Reception is poor at the beach with my cell phone. Send me your email address.

Sounds like you are getting yourself organized as you try to figure out just what route to take in whether to have surgery or not. Were you able to see if there are any SRS spine surgeons in your area for a second opinion?

Let me know if there is anything that I can do to help you. Hugs to you across the border. Susan

09-04-2013, 04:02 AM
Susan,I enjoyed talking to you too and getting some first hand information about the surgery.
I did find another SRS Spine Surgeon in Toronto a Dr. Stephen Lewis. I will send you my e-mail address.
Hugs to you too!

10-11-2013, 08:27 AM
Hello every one,
Happy to see the forum up and running again, I have missed it.
I saw The Scoliosis surgeon this week and after looking at my MRI and CAT scan he agreed with the other two Doctors I have seen that I will need surgery to correct my problems. He send me for X Rays and I will be seeing him again Nov. 4th to go over them with him. He could not tell me the curvature degree till he sees the X-rays, but said it is a significant thoracic-lumbar curve. I would have to wear a brace after surgery for about 3 months and no Physio.

He will let me know how far up he has to fuse after he sees the X-rays. My husband and I both felt very comfortable with him doing the surgery. The waiting time for surgery is about a year which is a long time as I am in a lot of pain and can not walk very far. He did say he does this kind of fusion and decompression a lot on people my age and has had good results. So we will see how the next appointment goes.

03-04-2015, 12:12 AM
After waiting nearly two years for this surgery the Dr's office called this afternoon, my surgery has been prosponed to April 15th.
Not that I was looking forward to it, but I want to get over with. And now I have to wait another 6 weeks and think about it.
She said the Hospital has a certain budget for Orthopaedic surgeons each year and their year end is the end of March and my surgery would put them over the top. So have to wait till their new year starts.
Oh well I guess there are worse things and maybe the snow will be gone by the time I get out of the hospital.
And the the weather will be warmer so I will be able to walk outside.

03-04-2015, 08:39 AM
How very disappointing to be postponed. Waiting is so hard, it reminded me a little bit of being pregnant, where you kind of feel like you are in suspended animation and waiting for the big event so life can start again.

This surgery is incredibly expensive, I have been seeing my bills this past month and the cost of the implants alone was $160,000. Canada might get a bit of a discount but it's easy to see why a long fusion patient might get postponed. Hang in there.


03-04-2015, 01:05 PM
I agree with you, this website is amazing. I have been reading for months now on it and can't say enough positive things.

By reading your original post it seems that you and I share the same ailments. I am going to see the surgeon tomorrow and possibly we'll nail down the date for the surgery. Be calm; everything happens for a reason and I am confident you'll be fine. Sometimes the wait can be worse than the pains.


03-05-2015, 09:45 AM
I understand how disappointed you are to have your surgery postponed after waiting so long and focusing on a particular date. After waiting a year, mine was postponed two months. I was such a worrier and about drive myself crazy before the surgery. It will be nice that you will have warmer weather and be able to walk outside. Hang in there.

03-06-2015, 08:06 PM
This forum has been so incredibly helpful and informative. There is so much to read and so much to learn from all of you. I really appreciate all the time and thought that everybody has put into it.
Thanks to everyone who has replied to my posts.

03-07-2015, 08:07 PM
I'm often asked about how I knew to go to a dr in St. Louis (from Ohio) & how I knew what to expect. My answer is: this awesome forum. I can't begin to imagine how much, much more scared I would have been without the benefit of the experiences & encouragement from the forum members. Marianne, I'm glad you found the forum, too!

04-04-2015, 07:00 AM
Well 11 days to go!
I have a question did most of you wear a brace after surgery.
My Doctor says I will probably not need one but will decide after surgery. Would you not feel more secure if you wear one for the first while?
I am also worried about the drive home, we live about 3 hrs away from Hospital and the roads are not in great shape after the winter we have had.
Anything I should be bringing for the trip home?

04-04-2015, 11:20 AM
I did wear a brace after surgery.

In answer to your question about what to bring for the trip home , the answer is PILLOWS...LOTS AND LOTS OF PILLOWS


04-04-2015, 07:57 PM
I actually wanted to have a brace because I was concerned I would accidentally twist or do something that would effect the fusion. Dr. Lenke said that your muscles have to work harder without a brace and he decided that I would not wear one . I think one should let his/her surgeon decide on an individual basis what is best. Good luck! Take lots of pillows for the ride home.