Surgery or not

[kootenaygal]

I have had scoliosis, since a young girl. I'm now 60, and my Kyphosis is excessively curved. The lordosis has caused my T-12 to collapse, and my lumbar is now wedged. I have been doing as much as I can to keep myself moving....deep water running, & physio ( mainly IMS ( inter-muscular stimulation). My physio therapist, thinks that I no longer have a choice...it is already effecting my lung function ( on oxygen at night). But my back is getting steadily worse...now on morphine for pain control. I was seen by a back surgeon, who examined my back, and studied my MRI. He spent a short time with us, saying that he did need to study my MRI more carefully, with 3 other back surgeons. At that time, he would beable to answer more of our questions.
But he did say, that I would have 2 options....either do nothing, and deal with the collapse & pain, OR have extensive back surgery, which would involve rods and screws. He also said our decision should not be taken lightly, as it was a risky operation, at which point he discussed the risks. We were told to go home, and educate ourselves about this kind of surgery, through support groups, and chatting with others who have had this surgery. I will be meeting with him at the beginning of December, for more x-rays....and many of my questions.
I need to hear from others who have had back surgery, with rods & screws. What kind of pain are you in now. What was your recovery like...how long did it take to feel, that you were happy you had the surgery. I have so many questions...and I'm so undecided as to what to do. We are having a appt. with my physio therapist, & our family doctor, to discuss the surgery.
Looking forward to hearing from anyone, who has had this surgery as a adult...and their thoughts now.
thanks...Kootenaygal

[Marina63]

Surgery

Hi K!
It sounds to me like you don't have much of a choice. Collapse and pain or surgery? I had the scoli surgery in July. I have 13 levels fused. Two 12 inch rods and 26 screws. My scoliosis was not as dire as your situation but I had the surgery in order to avoid exactly what you are going through now.

In my opinion, I would have the surgery if I were you. It's definitely a risky surgery but the alternative seems riskier to me. It's a slow recovery process, the first weeks are tough but you have to look at this big picture. A year or so of recovery and then the rest of your life feeling much better.

I'm sure you will get a lot of feedback from this forum It's terrific and everyone is very supportive.

best of luck to you!

Marina

[Doreen1]

Hi Kootenaygal,

Thank you for sharing your journey. You've come to the right place for advice/insight/suggstions all things scoli. I am scheduled for full fusion T4 - sacrum next year. My spine is collapsing, have lost 3" in height this year, and the pain is unbearable. My goals are to stop the curves progressing and elliminate some pain. Currently have T70* and L68*; the curves were at 40* five years ago. I've lived the past 10 years in pain and the quality of my life have greatly diminished this year (unable to do things with my family). I also have breathing issues because my ribs are compressed into my pelvis and am now wheezing.

I turned to this forum in July to learn how surgical technology has advanced over the years. It was overwhelming to me in a positive way to learn about the amazing surgeries being done with remarkable outcomes. What are your current curve(s) measurements?

Two pieces of advice I have for you at this stage:
#1 Decide what your goals are. Do you want to stop your curve(s) from progressing? Do you want to minimize pain? Do you want to have improved quality of life?

#2 Get second or third opinions from the most qualified scoli surgeons. The surgeon ultimately selected to do one's operation is key to the success of the outcome.

After reading the abundance of information on this forum, my confidence grew so that I realized now is the right for me to surgery because I'm the healthiest (aside from my spine) I've ever been in my life, the technology is right and I'm physically and mentally ready to reclaim my life from the disease that's been slowing robbing me over the years.

You will receive many responses from those who are now "on the other side" of surgery. I hope you gather great info here.

Warmly,
Doreen

[walkingmom]

Surgery comment

Hi Kootenaygal,

You have come to a great forum for gathering info following spinal fusion surgery. I am approaching the six mos. post-op mark. Prior to my surgery, I was in great physical shape (for a scoli patient) thanks to playing tennis and walking. I currently walk about 3-4 miles/day, but I do continue to have nerve pain. I am hoping that it will eventually stop, but I have not reached that point yet.

Frankly, I wished that my surgery was not necessary, but with a progressive curve along with trunk rotation that I was feeling, I didn't really have a choice. It was either wait for the curve and pain to get worse or have the surgery now. With that being the case, I am glad that the surgery is behind me. I am just not a real "patient patient" when it comes to recovery issues.

So if you decide to have the surgery, it is most helpful to have a strong support system. I was blessed to have my husband who was able to be home with me for a month following surgery. Also, it is very encouraging to read the postings of others who are further out from their surgery date. I still have a way to go before I can resume my pre-surgery activities, but I am slowly making progress toward doing so.

Getting input from fellow scoli patients is invaluable and will help put your mind at ease that you are making the right decision. Best of luck to you as you sort everything out.
Donna

[Elisa]

Kootenagal, are you from the Kootnies in BC? :-)

I am not as knowledgeable about adult scoliosis as it is my son who has scoliosis but it looks like you're getting some good advice, and welcome.

[LindaRacine]

Hi kootenaygal....

I had scoliosis surgery 20 years ago, at the age of 42. My recovery was pretty long and hard. I had revision surgery in January of this year, to add another 4 levels to my fusion. While it wasn't a very fun time, my recovery was truly only 3-4 months long.

Recovery rates vary considerably, but most people are able to return to work within 3-6 months.

Regards,
Linda

[Karen Ocker]

I had surgery at age 60- 9 years ago

I had a very extensive revision-at age 60- of an old fashioned non-instrumented originall scoliosis surgery done at age 14 in 1956. This lasted until I was 59.
I had lost lung tissue and 3 inches in height. My surgery 9 years ago--with rods, screws, wires and a cage gave me my life back.

I have absolutely no pain and am 691/2. I worked until last year at a job which required standing all day.

My decision was based on the fact it was getting worse and my expected life expectancy would be shortened--not to mention quality of life.

I was so grateful I could be helped. My suggestion: see the best recommended scoliosis surgeon who specializes in adults. It is a big risky surgery but I didn't even dwell on that. My surgeon told me not to wait too long because the larger the curve the less chance of a good correction. I got 50% correction.

I was: 30 cervical, 80 thoracic and 40 lumbar.

[djkinkead]

Hi kootenaygal,

Welcome to the forum.

I am 57 and just had the spinal fusion surgery two months ago. If you go to my website in my signature, you can see how badly my spine was curved and rotated before and after my surgery.

I think the best advice I can give you is to look for the BEST surgeon your health system will allow. Not all spine surgeons are created equal. Look for references from patients and from other surgeons--who would THEY go to to operate on themselves?

Also look for a hospital that would have some expertise in spinal surgery...for example, the hospital I went to in Baltimore, MD, had a dedicated spinal surgery wing. Everyone on their staff knew exactly what to do for me as I went through the five day stay at the hospital. They knew what drugs I needed to keep me comfortable. If I needed something stronger, they knew what to give me.

It sounds like you really don't have a choice, and I understand where you are coming from. If I didn't have this surgery, most likely in about ten years my spine would have pushed a lung into my heart and well, game over.

The first four to five days post surgery you are pretty out of it due to heavy duty drugs. The drugs continue, but lighten up as the weeks/months go by. To be honest, I have no idea where the month of September went.

Anyway, my first input for you: FIND THE BEST SURGEON.

[paula]

I'm 4.5 months out, and other than being tired, I'm much better than before the surgery. The only advice I have is a repeat of what others have said-interview several surgeons and research their backgrounds. Ask how many similar surgeries each doctor does. Actually one other bit of advice. Do what you can to get in as good of shape as possible by the surgery- diet, exercise, sleep- as much as you can within your limitations.

[kootenaygal]

re; Surgery or not

Thank you everyone for your advice...this site is absolutely great. A positive addition to my scoli life.
thanks again...)) Kootenaygal

[kootenaygal]

Surgery or Not

Kootenaygal here. My husband & I went to see our family doctor today, to discuss his views regarding back surgery. We really value his opinion. He received a memo from the surgeon.."" Surgical intervention in my case would be very MAJOR, likely requiring instrumentation, decompression, and spinal osteotomy with correction of the deformity. This is a very, very, very MAJOR procedure for a 60 year old woman, who probably has some element of osteoporosis."

Our doctor, feels that I would be in more pain, from the rods, and pins, than I am now. I know if there is any risk of complications...I know it would happen to me. I don't seem to miss anything. (

I'm not concerned about my appearance...but as I collapse further, what will happen to my lung function, and internal organs? My ribs are already touching my hips...my kyphosis is so bad. I don't know my degree of collapse...but my physio therapist says it's big. My doctor, says...as soon as there is any change in my lung function, or effects on my organs...no choice, but to have the surgery.

We see the surgeon again in the beginning of December...do the risks in my case, out weigh the benefits of having the surgery. I am so afraid of the surgery, and the recovery. I wish I knew what to do!!
I am doing that new urine test, that tells if I am losing bone...and I'm having another bone density later this month.

Has anyone had this back surgery with rods etc. who may also be osteo??

This is such a amazing support group...looking forward to seeing some replies! )
Kootenaygal.

[jrnyc]

if you go to the top of the page, to "advanced search" and type in "osteoporosis,"
another screen will come up...i then typed in key words of "osteoporosis" and "osteopenia"
and checked off to search in forum and posts....then clicked search...
i came up with 70 posts on the subject...

i have met several general doctors and also several pain management doctors who
speak against a patient having spinal surgery for scoliosis

i think the most important thing is to meet with several scoli surgeons...
or as many as you can since you are dealing with the Canadian system...
and see if they all recommend the same surgical procedure....

would you consider coming to the States just to consult with a top
scoli surgeon here....like in NYC or CA...? just for their opinion on your
individual case?

i don't remember seeing what size your curves are, or whether you ahve other problems, like degenerative discs,
hypo or hyper kyphosis, etc....
how long a fusion did they say you would need?
scoli surgery involves rods and screws for all who have it...

best of luck...
jess

[JenniferG]

This surgery for us older ladies/men who require fairly extensive correction and instrumentation, is always major. I am concerned that you're making a decision based on your family doctor's fear of the surgery, a person who possibly has little or no experience with this type of surgery. My advice is to get 2 or 3 opinions from Scoliosis surgeons who have plenty of experience on mature scoli patients and be guided by that. There are many here older than you who've had the surgery and benefited greatly.

Of course, the decision is yours in the end and can only be based on advice given and your desire or lack of desire for the surgery, after weighing up all possibilities. It's possible you may be advised against surgery, however, it needs to come from a specialist in the field, I believe.

It's very very hard to make this decision. Best of luck!

[golfnut]

I had surgery 10 months ago at age 60 and have had a smooth recovery other than overdoing it a few weeks ago. You can check my signature for more details of my surgery. I had one of the best surgeons in the country, but was still terrified. As others have said, you need to be sure to find an excellent scoli surgeon who is experienced with complex scoliosis surgeries. You can't listen to opinions from those with little knowledge of this surgery. A month before my surgery my tap dancing instructor told me I was making a huge mistake. Good luck with your decision.

[Pooka1]

A month before my surgery my tap dancing instructor told me I was making a huge mistake.

Stunning. A tap dance instructor has an opinion about spine deformity surgery. Yet another Candid Camera moment for me at least.