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Maggi C-B
08-20-2008, 02:41 PM
Hi!
Maggi here!

Today SHOULD have been a god day. It's my son's 16th birthday.

It was spoiled, however, by the fact that I am in such pain I can't think straight.

I have spondylolothesis and cannot escape from the constant, grinding pain that affects not only my lower back, but my left leg and foot.

I can't walk more than a few yards, I can't sleep.

I go to the hospital next Tuesday, to have an MRI and to speak with a surgeon.

I don't want the operation, because having spoken to people who've had it, the risks seem to outweigh the benefits.

I'm truly at my wits end.

My life is bound by the pain and my family are fed up of my limitations and seeing me creep round the house in a state of cowed acceptance of the pain.

Would that I had a choice!
Sorry to whinge, but I really don't feel able to cope anymore.

Susie*Bee
08-20-2008, 04:19 PM
Dear Maggi-- if only there were a way we could wish someone's pain away! I am so sorry the pain is controlling your life. But this is the(e) place to come and share how you're feeling, so I'm glad you posted. I know there are many people who have had similar stories to yours and have worked through their challenges.

As for the surgery-- yes, there are risks that are kind of scary to think about. But there are risks for flying in a plane... our lives are filled with choices and risks. My surgeon said I would know when I wanted surgery by when the quality of my life was affected by my scoli-- enough so that I wanted it changed. He also said some people may never feel they want surgery because they are reluctant (for whatever reasons) or want to continue how they are. You have to remember that if your curve(s) are progressing, it will not stay the way it is now, but cause even more severe problems and pain. There are MANY of us who have gone through spinal fusion surgery-- and most don't regret it at all, even if/when there are complications that arise.

Hang in there. I'll be praying for you. --Susie

Suzy
08-20-2008, 08:53 PM
I don't want the operation, because having spoken to people who've had it, the risks seem to outweigh the benefits.

I'm truly at my wits end.

My life is bound by the pain and my family are fed up of my limitations and seeing me creep round the house in a state of cowed acceptance of the pain.


Wow Maggi, I have to wonder who you have been talking to, and just how many? I only know of one person who actually said "I wish I never had this surgery." I have been on this forum for 3 years and attending the local support group for that long as well. I am no expert but I do know over and over the post-op people say they would have their surgery again, even those who had complications! Hopefully you can read the post-op update threads and see for yourself.

You say you are at your wits end. I hope the MRI and surgeon will help shed some light on how you can be helped.

The fact that your life is bound by pain is no way to live. You must not let the fear of this operation paralyze you. Address the specific fears you have with your surgeon or us here on the forum. I know people who put off their surgery so long they were not able to have it by the time they decided enough was enough. (Health issues other then scoliosis were the main cause.) I hope you will post more information so those of us who have/had similar curves and pain can give you the support you really need right now. You could be able to celebrate your son's 18Th birthday with a completely new you. Pain was taking away my life this surgery has given me (and many others) a completely new one. I hope you know we are here to help.
Best wishes.

Surgery 2/22/06 fused T10 to L4 *8 now!

CherylPJ
08-22-2008, 03:55 PM
I completely agree with Susie*B and Maggi!

Don't rob yourself and your family of these years. There is too much life left to enjoy.

I can say this and I am only 22 days post op. Yes, it hurts, but I am so obviously better off than I was that there is absolutely no room for argument.

Read everything that you can find and learn more. One good book is a Patient's Guide by a journalist who had the surgery and lays it all out. I apologize that I can't provide the title and author more completely, but I'd need to get help from my husband and the poor guy needs a moment's rest himself.

BTW, people will want to help you ... once you make the choice to help yourself.

nzgirl
08-24-2008, 03:07 AM
I chose surgery too when I realised that my quality of life without it, was worth the risk. It was a difficult choice but it was ultimately the right one. I had realistic expectations going in, that it may not leave me pain free. I took the mindset of anything better than where I am now, is worth it. And, while I'm not pain free, I'm certainly better than I was.

txmarinemom
08-31-2008, 04:49 PM
I think the book CherylPJ tried to refer to you is "Scoliosis Surgery: The Definitive Patient's Reference" (3rd Edition), and the author is David K. Wolpert.

Get it. Read it. And stop listening to whomever is telling you the risks of this surgery outweigh the benefits.


Today SHOULD have been a god day. It's my son's 16th birthday.

It was spoiled, however, by the fact that I am in such pain I can't think straight.

I have spondylolothesis and cannot escape from the constant, grinding pain that affects not only my lower back, but my left leg and foot.

I can't walk more than a few yards, I can't sleep.


I'm sorry you hurt. Many of us know what it's like to have our lives ruled by pain, and quite frankly, it blows. Especially when it intrudes on our full participation and enjoyment of the (what should be) simplest pleasures in life.


I go to the hospital next Tuesday, to have an MRI and to speak with a surgeon.

I don't want the operation, because having spoken to people who've had it, the risks seem to outweigh the benefits.

Like Suzy, I have to wonder who you've been talking to! I'm almost 7 months post-op, and NEVER - not even when I first came home - did I EVER wish I hadn't done it. This surgery gave me my life back, and took away pain I'd lived with since I was 10 years old.

What "risks" and "benefits" have these people described to you? Are they even talking about modern surgical techniques? Who is the surgeon you're scheduled to see? Does he specialize in scoliosis surgery (i.e., is he an SRS surgeon)? You can view a list of SRS surgeons here (http://www.srs.org/find). By choosing a highly qualified surgeon, you exponentially increase your chance of a successful outcome.

As Susie*Bee said, there are risks *everywhere*, *every day*. With a competent surgeon, in this day and age, the risk of complications from fusion surgery are minimal.


My life is bound by the pain and my family are fed up of my limitations and seeing me creep round the house in a state of cowed acceptance of the pain.

Would that I had a choice!

I am going to refrain from saying much about a family fed up with your limitations, except to comment maybe they're frustrated you haven't sought treatment before now. It's tough to watch someone in pain, but even tougher to know there IS help out there they refuse to pursue.

Hon, *really* ... you DO have a choice: You chose to join this forum. You can choose to educate yourself. You chose to make an appointment for an MRI and a consult (whether that surgeon ends up your final choice or not).

Let us know how it goes, and the best advice I can give you is eliminate the negative people from your life. They are of absolutely NO value to you on this journey.

Regards,
Pam

leahdragonfly
08-31-2008, 06:33 PM
Hi Maggi,

I am sorry to hear your pain is so bad. I have spondylolisthesis too (twice), so I can relate completely to your symptoms. You don't say if you have scoliosis, too...

Surgery for spondy is usually very successful and carries minimal risk. It should alleviate your back and leg/foot pain and allow you to be much more active. I have read that spondylolisthesis surgery is one of the most gratifying for the surgeon because of the high level of success in relieving symptoms. So please don't give up! And there are other options to try, too, like various injections/pain blocks, nerve blocks, pain pumps, physical therapy, etc.

Good luck!

theizzard
09-01-2008, 08:40 AM
my fusion surgery 3 years ago included correcting the spondylolisthesis and was definitely a success. before the surgery i could not put weight on my right leg without excrutiating pain. the pain was gone the day of surgery and has not come back (thank god).
avis

Maggi C-B
09-03-2008, 01:48 PM
I'm much reassured after reading the responses to my thread.

It seems that my information about this kind of surgery was very out of date.

I've since spoken to someone who had the same operation that I must have, just three weeks ago.
She tells me it's changed her life, enabling her to live a normal life again after years of pain and limitation.

I still have anxieties, which I'm told are natural, but overall, I can't WAIT now to have the operation!

It's been so LONG since I was able to function to any, 'normal,' degree that I can't remember what it was like!

Thanks for your encouragement.

Ginger W.
09-03-2008, 09:58 PM
Maggie,

It took me getting to that non-functioning point before I'd consider surgery. I am THRILLED by how good I feel now, and I'm only fourteen weeks out!