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Old 10-22-2008, 09:44 PM   #1
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Still undecided

The title says it all, I am still undecided as what to do regarding another surgery. I have never struggled so much with a decision before. It is not that I am not in pain because I am, I just wonder if it is worth the risk of getting better or continuing to have pain maybe worse than what I have now.

It is hard because my hubby keeps saying when you have surgery.....NEWS FLASH......may have surgery. He wants me to plunge forward, book the surgery and have the surgery. Easier for him to say, he is not the one undergoing the KNIFE and hurting.

I think I have come to a partial decision. On November 3rd, I am having my MRI updated and if it still shows no fusion, I feel that I have to move forward with surgery to stabilize my spine. If it shows fusion, I may postpone my surgery for a year and see what the year brings.

I have found out why a discogram will not work for me. I have a birth defect and my nerves do not follow the normal patterns so if I have a positive hit they are not sure which level is the culprit.

So that is where I am at for now.......thanks for caring and for listening.

Last edited by ms_west; 10-22-2008 at 09:45 PM.

 
Old 10-23-2008, 06:27 AM   #2
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Re: Still undecided

Well Pepper I think that its smart to take your time & really give thought to how you want to proceed. You have been through so much already. I am curious to see what your MRI will show. No matter we are all here for you what ever you decide. God bless, Sammy

 
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Old 10-23-2008, 11:33 AM   #3
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Re: Still undecided

Diet,
this is so hard, honey. Not an easy decision for everyone.
Hang on and see what your MRI shows and than you may come up with final decision.
Best of luck to you
Moldova

 
Old 10-23-2008, 03:23 PM   #4
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Re: Still undecided

Hey Pepper,
Thanks for the update. What a hard decision for you, you have already been through so much my friend. How long has it been since your last surgery? I can remember the entire "Back Board" praying for you on that day and we were on pins and needles waiting to hear. We can certainly do that again if that is the way you decide to go. Hang in there and keep us posted.

Deb

 
Old 10-23-2008, 06:25 PM   #5
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Re: Still undecided

My surgeries were as follows:

1982 - Fusion of s1/s2 due to spina bifida, transitional vertebrae, and si joint malformation repair surgery.

May 2006 - Laminectomy L5/S1

Feb 2007 - Fusion with hardware L5/s1

November 2007 - Revision with removal of right side hardware, laminectomy and decompression L3,L4, L5 and s1, adding of bmp to L5/S1/S2

The proposed surgery will consist of removal of all hardware, fusion L4/L5/S1/s2 with new hardware, possible fusion of si joint, cages, spacers, etc. It will be a very large surgery.

Mylegram and CT scan show no fusion at this point so we need to pray for fusion of L5/s1.

Thanks for your support.

Last edited by ms_west; 10-23-2008 at 06:25 PM.

 
Old 10-24-2008, 07:25 AM   #6
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Re: Still undecided

Quote:
Originally Posted by 123dietdrpepper View Post
My surgeries were as follows:

1982 - Fusion of s1/s2 due to spina bifida, transitional vertebrae, and si joint malformation repair surgery.

May 2006 - Laminectomy L5/S1

Feb 2007 - Fusion with hardware L5/s1

November 2007 - Revision with removal of right side hardware, laminectomy and decompression L3,L4, L5 and s1, adding of bmp to L5/S1/S2

The proposed surgery will consist of removal of all hardware, fusion L4/L5/S1/s2 with new hardware, possible fusion of si joint, cages, spacers, etc. It will be a very large surgery.

Mylegram and CT scan show no fusion at this point so we need to pray for fusion of L5/s1.

Thanks for your support.

 
Old 10-24-2008, 07:28 AM   #7
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Re: Still undecided

I was reading some of your info and I was wondering why you had to have so many surgerys and did they help?Mine did not,they only made me worse.

 
Old 10-24-2008, 08:05 AM   #8
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Re: Still undecided

Quote:
Originally Posted by 123dietdrpepper View Post
It is hard because my hubby keeps saying when you have surgery.....NEWS FLASH......may have surgery. He wants me to plunge forward, book the surgery and have the surgery. Easier for him to say, he is not the one undergoing the KNIFE and hurting.
Hello Pepper....Just wanted to say that I couldn't agree with you more. Always easier for someone else to say. I've had my fair share of operations, and I know exactly where you're coming from. Only you can make this decision and what's best for you. Everyone's condition is different and the potential outcome is something to consider.

Best of luck with making your decision. I'll be praying for you.

Regards,

Ex

 
Old 10-24-2008, 09:13 AM   #9
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Re: Still undecided

Diet,
I agree with EX, you and only YOU can make this decision. This is a very tough one, been there many times too.
I am sure your husband means well; he wants you to try everything before you giving up and say enough is enough. He may strongly believes that this time they will be able to help you. He was with you through your all ordeals and knows how much pain it causing you.
I realized that all our issues affect our loved once too; they deal with it differently and the best they can. For example my husband scared for me more than I am, he trusts my decision making, but I always involve him in every decision I make. I know this is so important to him. I am lucky that he is very compation and understanding and always there for me.
The main thing, sweet heart, for you to be confident that your DRs giving you the best advice and that they are very experienced. This will help you to make your mind too.

Best of luck to you.
Moldova

 
Old 10-24-2008, 06:15 PM   #10
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Re: Still undecided

My opinion is that if you haven't fused, you probably need your back stabilized. I would just be very very careful not to get your hopes up for the nerve pain to go away. I had my 3rd surgery to stabilize my back and I think that is definitely important, and if you have physicians recommending it, then seriously consider it.

You may have some serious pain relating to your unstable back (the non-fusion) that may improve, but the chronic nerve pain your EMG diagnosed likely won't be healed. From what I have researched, if the EMG had indicated "acute" damage, that would mean it was fairly recent and has more likelihood to be healed. Hate to have such a downer opinion, but I know how you feel. Dreading another surgery and wondering if you will improve. My husband is similar to yours. Anything to get me better, he just seems eager for anything. **REMOVED**

Sadly, he has finally had to come to understand and accept that my chronic nerve pain is forever. My back is now stable and I am fully fused. There is nothing more that can be done regarding spinal surgery. The nerve pain I have has not changed in 2 years, although I have had 2 surgeries in that time. Back pain has been decreased, but nerve pain was not affected.

We are now moving forward with the SCS, and I have my mandatory psych appointment on Oct. 31st. Nurse said it should take 2 to 3 hours. I surely hope the neuropsychiatrist has a recliner or couch I can lay on, because there will be NO sitting for longer than 20 minutes, let alone 2 to 3 hours. Doc is positive I will pass it, and then we will do the trial.

If I don't pass the psych test, or if the trial is unsuccessful, she indicated that I will continue to up my meds until we run out of options for that. Then they will consider an implanted pain pump.

Once my EMG showed the chronic S1 nerve damage and knowing my back is fused and stable, docs quit promising me pain relief. They leveled with me and told me I will be in a lifelong "medical management" for pain. I appreciated the candor.

I don't envy the position you are in - I so understand. But if your back is not fusing, the hardware will only hold for so long (or so they say). Have you asked the docs what they think will happen if you don't address the non-fusion?

Good luck.

Last edited by Mod08; 10-25-2008 at 12:37 PM. Reason: Peer Support only.

 
Old 10-28-2008, 08:29 PM   #11
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Re: Still undecided

Bolton, my first surgery on s1/s2 in 1982 was due to a birth defect - spinal bifida. My second surgery in May 2006 was the level above L5 and I had bone spurs and compression of the nerve. At that time, my doctor was torn between doing a fusion and we jointly decided to do the lessor which was a laminectomy. After this surgery, I was doing well until I slid something into the dishwasher and blew the level out completely. I had a fusion done in February 2007. In April of 2007, I herniated L4. I never really did well after this surgery and a mylegram showed that L4 was compressed and a nerve block showed that my hardware on the right side was causing me problems. My doctor went in last November and removed the hardware on the right side only and decompressed L3 and L4. Now it appears that I have had a nonunion of L5/s1 and L4 needs to be fused. I am scheduled for an MRI next week. My doctor wants to put hardware in from L4 down to S1 and possibly fuse the si joint.

Hope this helps you understand the picture a little more clearer. Yes previous surgeries worked I just have no luck. LOL

 
Old 10-28-2008, 08:31 PM   #12
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Re: Still undecided

Sky, thank you for all your love and support. I don't know what I would do without you. You do understand what is like to face multiple surgeries. I am at the point that I don't want to say anything to anyone because I have been told, your doctor needs to leave a zipper in you. GREAT, thanks that makes me feel wonderful. People just don't get it -- I would love to be normal and not have pain. Spinal surgery is NO picnic that is for sure. I will have 6 months of recovery at least. Not something I care to joke about at all.

 
Old 10-28-2008, 08:37 PM   #13
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Re: Still undecided

Lilypoo, I am sorry that there is nothing they can do for the nerve pain. I was told that and then now they are saying there is something they can do so I feel like I have to at least consider it.

My PM doctor is against the SCS and told me that she has seen more problems with infections and individuals only have temporary relief. I have been told that if one considers it that they should be committed to being a couch potato for 3 to 6 months until the leads are in place with scar tissue because you don't want them to move or they have to go back in and surgically reposition the leads. I have also been told that you usually on get leg pain relief and alot of individuals have more back pain than they started with. I don't want to sound negative but just want to pass on what my doctor has told me. Make sure whomever you choose has done many of these and has had alot of success with them. Talk to their patients. Good luck and please keep us posted. I do care.

 
Old 10-28-2008, 08:43 PM   #14
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Re: Still undecided

Moldova, as always thank you, for being here for me and just listening to me. I so love the fact that we are able to talk 24/7. I consider you my long lost sister. ((((Hugs)))

Exec, thank you for your support. You are right only I can make this decision. I am not getting it from my MIL and Mom. They are already making plans to come stay here and I am like I have not made up my mind yet. Ughhh....frustrating.




Everyone, I want you to know that it gives me such comfort to sign on and see notes of encouragement and support. It is helping me get thru this time of undecisiveness and means the world to me. I have my MRI on Monday and will meet with my surgeon next Friday, I believe it is the 6/7th. I will be sure to post back and let you know what he has to say.

Again, you mean the world to me!!!

Blessings,

Pepper

 
Old 10-29-2008, 04:19 AM   #15
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Re: Still undecided

Pepper, one step at a time. See whats in this MRI & take your time if you can. you have been through alot & will make the best choice for you.
So nice that you have help with the "moms", mine would have done the same.
God bless, Sammy

 
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