Hi Everyone,
I am back again, with yet more problems. I had a fusion at L4/5 with instrumentation last March. Since the fusion, I have had problems above and below the fusion, and the foot drop that I had before the fusion has gotten progressively worse. I have nerve pain, shooting pain down both legs, can't sit for more than 15 minutes without my legs going numb, can't tell when I have to urinate until I need to get to the bathroom or else:eek: , I can't straighten my legs out completely when I stand since it causes the muscles in the front and back of my thighs to cramp, along with the inside and outside of my calves, etc......anyway, I saw the OS again, he basically told me that there was nothing mechanical going on, therefore, he was relegating me to PM. The physiatrist at the office was pushing me to get a scs which I don't want. I have been on more pain meds now than I was before I had the fusion. Anyway, I decided to get a second opinon with a neuro and find out if he thought a scs was a good idea. He sent me for a new mri, which revealed a severe stenosis (compression) of the spinal cord at L3-4, a moderate to severe compression of the cord at L2/3, and a severe compression at L5-S1, along with moderate stenosis on the left side at L5/S1, and a severe stenosis on the right at the same level. He said that there was no way he would recommend a scs, and no shots either. He said that my options at this point were more surgery or hold out as long as possible.
I went back and showed the physiatrist the report and told him what the neuro had to say, and he said that since I have been complaining of those same areas he would recommend another surgery and maybe it might prevent more nerve damage.
I decided to get yet another opinion. That neuro said that he would do surgery which would include a revision of the fusion at L4/5, extending the fusion to L3/4 and probably L2/3 or I would be back in a year if I lasted that long to extend the fusion to that level too, and that he would try to just do a laminectomy at L5-S1, but that he thought that he would wind up having to fuse that too..........anyway, needless to say, my head is spinning right now, and I am unsure about what I should do.
I can't take living the way that I am right now, the pain levels never fall below a 7, and if I do anything, they rise right up to a steady 9. To be honest, I am scared to death of the idea of a fusion that big........and all of the problems that there could be with it. At the same time, I can't walk for any distance, the numbness in my legs and feet drive me batty, and when I try to stand up after sitting, I have to wait for the numbness to go away......my feet feel like they are on fire much of the time.
We ( the physiatrist and I ) haven't told the original surgeon that I got a second, let alone a third opinion and there is a part of me that wants to rub his nose in it and say, see I told you.....but at the same time, I feel like I should give him a chance to see what he has to say.
What would you do if you were me? Would you seek out another opinion? Any ideas of who around the NYC area? I live about 60 miles outside the city.......
I am at a complete loss as to what to do...........help please.:confused:

First off, I would like to say I am so sorry you are suffering so much after your fusion and I pray that you are able to find doctors with the wisdom to help you lesson your pain.

To me, it sounds like you already have your answer from 2 different neurosurgeons to head back to the operating room. However, if you have any doubts why of course seek another opinion. It won't hurt.

Hi Everyone,
I am back again, with yet more problems. I had a fusion at L4/5 with instrumentation last March. Since the fusion, I have had problems above and below the fusion, and the foot drop that I had before the fusion has gotten progressively worse. I have nerve pain, shooting pain down both legs, can't sit for more than 15 minutes without my legs going numb, can't tell when I have to urinate until I need to get to the bathroom or else:eek: , I can't straighten my legs out completely when I stand since it causes the muscles in the front and back of my thighs to cramp, along with the inside and outside of my calves, etc......anyway, I saw the OS again, he basically told me that there was nothing mechanical going on, therefore, he was relegating me to PM. The physiatrist at the office was pushing me to get a scs which I don't want. I have been on more pain meds now than I was before I had the fusion. Anyway, I decided to get a second opinon with a neuro and find out if he thought a scs was a good idea. He sent me for a new mri, which revealed a severe stenosis (compression) of the spinal cord at L3-4, a moderate to severe compression of the cord at L2/3, and a severe compression at L5-S1, along with moderate stenosis on the left side at L5/S1, and a severe stenosis on the right at the same level. He said that there was no way he would recommend a scs, and no shots either. He said that my options at this point were more surgery or hold out as long as possible.
I went back and showed the physiatrist the report and told him what the neuro had to say, and he said that since I have been complaining of those same areas he would recommend another surgery and maybe it might prevent more nerve damage.
I decided to get yet another opinion. That neuro said that he would do surgery which would include a revision of the fusion at L4/5, extending the fusion to L3/4 and probably L2/3 or I would be back in a year if I lasted that long to extend the fusion to that level too, and that he would try to just do a laminectomy at L5-S1, but that he thought that he would wind up having to fuse that too..........anyway, needless to say, my head is spinning right now, and I am unsure about what I should do.
I can't take living the way that I am right now, the pain levels never fall below a 7, and if I do anything, they rise right up to a steady 9. To be honest, I am scared to death of the idea of a fusion that big........and all of the problems that there could be with it. At the same time, I can't walk for any distance, the numbness in my legs and feet drive me batty, and when I try to stand up after sitting, I have to wait for the numbness to go away......my feet feel like they are on fire much of the time.
We ( the physiatrist and I ) haven't told the original surgeon that I got a second, let alone a third opinion and there is a part of me that wants to rub his nose in it and say, see I told you.....but at the same time, I feel like I should give him a chance to see what he has to say.
What would you do if you were me? Would you seek out another opinion? Any ideas of who around the NYC area? I live about 60 miles outside the city.......
I am at a complete loss as to what to do...........help please.:confused:

hi
It sound like you have very similar prob's to me , how about having a wallis ligament or dynamic stabilisation systems at L3/L4 and don't have the fision . This is what i'm going to have done at levels L3/L4-L4/L5 and if that don't work i have options to have fision , and its only minimally invasive surgery so its worth a go .There are lots of web sites ,Hope this help from jules

Sorry for your pain ,it sounds terrible. But being that right now your pain level only subsides to a 7 why not have the fusion. ? I would think they could bring it down lower than that by having it done. No brainer I would have the surgery.
Wishen you the best whatever you decide

Sandim - Just wanted to send you a cyber hug. My head would be spinning also! My heart goes out to you. I am 6 weeks a 2 level fusion. I also know the pain from stenosis, would not wish that pain on anyone. I think only you can make that choice of having surgery. But, I think you already know in your heart what you need to do. Not an easy thing the back is to deal with! If I could get a new spine/back I would do it in a heartbeat. I am not in the NYC area so I don't know any doc's out there. Look on the net. Good luck to you Sandim! Hope things get better.

Rose

Hi Sandi,
So sorry to see you back with such terrible problems. It sounds like your option is surgery to me. I know how hard that is to make that decision, I had to make it 4 times that last two were within 4 days of each other. The only good thing is you know what you will be going thru when you have the surgery. Now that doesn't make it any easier but there are no surprises about what it will feel like. For me emotionally it was easier than the first one.

I'm so sorry you have to suffer so much with this. I'm glad you came back here, you know we will support you no matter what you decide.

Good Luck

God Bless

Carol

Hi Sandi,

I'm so sorry that your in this amount of pain.

I know that fusion surgery is no easy decision, and nobody wants it either, but with that said, you have some moderate to severe cord compression and that would also explain alot of your pain. Having the surgery, hopefully would atleast get the compression part fixed. Which in return would/should give you relief with alot of your symptoms.

I wish you luck with your decision, I know it's not an easy one. Please keep us updated on how your doing and what you've decided.

Take care,
Bernie

Also Sandi, if your having bowl (sp) and bladder issues, then that's another sign that surgery should be done. I don't mean to scare you, really, but if you research it, you'll see that, it's nothing to mess with.

Bernie

HI,
Bernie is right on that one, my doc told me if the bodily functions are being affected in any way to go to the ER ASAP, So if your having lil problems I would not wait too much longer. It is very serious.

God Bless

Carol

Hi! I know this is not what you exactly wanted to hear but you REALLY need to get to the ER or your surgeons office ASAP with your bladder symptoms.

I am lifting you up in prayer and pray that you and your surgeon will have the wisdom to make the proper decision for your case. Good Luck!!

First off, I would like to say I am so sorry you are suffering so much after your fusion and I pray that you are able to find doctors with the wisdom to help you lesson your pain.

To me, it sounds like you already have your answer from 2 different neurosurgeons to head back to the operating room. However, if you have any doubts why of course seek another opinion. It won't hurt.

Sorry everyone, I will get back later this afternoon to answer everyone else. I had a myelogram in June to find out if there was any compression and the report says none. As I read through all of the reports last night, I finally figured out why it says no. They did the entry for the at the L3-4 space..........sheesh it's no wonder, they went in just below where the first huge compression is!!!!!!!!!!!!!!
If you get conflicting reports, make sure to read the part about where the entry is done for something, it might explain alot.
I am off for the third opinion this morning. As I read through the replies, I know that I am just prolonging the inevitable. I am just nervous and worried, and hoping for something other than another fusion, especially one this length.
Thank you all, and I will be back after seeing this ortho and his recommendations.
Sandi:)

Lifting you up in prayer and praying that you find the answers you so desperately need. I will be looking at your post for your update.

hi
It sound like you have very similar prob's to me , how about having a wallis ligament or dynamic stabilisation systems at L3/L4 and don't have the fision . This is what i'm going to have done at levels L3/L4-L4/L5 and if that don't work i have options to have fision , and its only minimally invasive surgery so its worth a go .There are lots of web sites ,Hope this help from jules

Thanks Jules, I will see what I can find on the internet about those things. Are they similar to a fusion? Do they work with cord compressions? Ah, I guess I'll find out when I look them up........I found them. I will read more and then discuss it as I find it out. Thank you for the ideas. I wonder why neither of the neuro's have brought up either option?
Sandi

Sorry for your pain ,it sounds terrible. But being that right now your pain level only subsides to a 7 why not have the fusion. ? I would think they could bring it down lower than that by having it done. No brainer I would have the surgery.
Wishen you the best whatever you decide

Thanks Shawley.
I wish that there were easy answers for all of us. Then we wouldn't need to find a place like this, but I am so glad that it is here, and that all of you are here. I feel like I am going batty. Today is not one of my better days and I am fed up.

Sandim - Just wanted to send you a cyber hug. My head would be spinning also! My heart goes out to you. I am 6 weeks a 2 level fusion. I also know the pain from stenosis, would not wish that pain on anyone. I think only you can make that choice of having surgery. But, I think you already know in your heart what you need to do. Not an easy thing the back is to deal with! If I could get a new spine/back I would do it in a heartbeat. I am not in the NYC area so I don't know any doc's out there. Look on the net. Good luck to you Sandim! Hope things get better.

Rose


Thank you Rose. I wish you a speedy healing and a good, solid fusion......the whole idea of more than one level is scaring me. I know that I was worried with just one level, but it's the whole idea of extending it, doing a revision ( what the hecks is that anyway? ) of the first one and then extending it below that, is just frightening. I have read the stories of people that have had a multi level and there are all of the problems with fusing, and the pain not subsiding.
At what point do the doctor's say that it isn't going to help the nerves to have surgery anymore? Is there a 6 month time frame? 12 months? Or is it another one of those unknowns? Sigh..........

Thank you Mammakitkat,
May I ask how you feel now? Are things improving for you? Why did you have to make the decision so many times in such a short time frame?
I hope that it helps you this time.
I just hope that I make the right decision. The doctor I saw today said he can't tell whether or not there is a fusion on the Xrays............just great........not what I expected to hear.......

Thank you Bernie, I did bring the films back to my ortho's office and told them to give them to him when he comes here next week. I am going to talk to him and see what he plans to do to fix this.
I am at the point where I am fed up and tired of feeling this way. I now have to worry about whether or not I am fused. My OS said that I was, but I have yet to see it on any films or reports.......this guy I saw today said that he can't tell if I am or not .........so along with the original OS getting the new MRI, he is going to have to show me on the films where I am fused. I want to see the Xrays myself. The new MRI doesn't address fusion or not , either way.......

Hi! I know this is not what you exactly wanted to hear but you REALLY need to get to the ER or your surgeons office ASAP with your bladder symptoms.

I am lifting you up in prayer and pray that you and your surgeon will have the wisdom to make the proper decision for your case. Good Luck!!

Thank you. I did make the physiatrist aware of the bladder issues. He knows that it has been going on for awhile now.
I did stress to him that it was getting worse instead of better. I hope that when the OS comes up here again that he sees the films and calls me. Otherwise I will go to the office and have a talk with him myself.
I am also a bit miffed at the last myelogram. They inserted the ISO-vue ( dye) at the same level as the stenosis. No wonder they didn't see it, they went just below where it was. Unless they tilted the stupid table, they wouldn't have seen it. I confirmed that with the new OS I saw today............doctors!

okay, for the new visit. I saw another OS. I have to say that he was a jerk. But that aside, he started by asking me what I wanted from him, and I replied that I wanted an opinion on the MRI and some recommendations as to what I could do, options that I had.
He told me that the xRays don't show a fusion at the L4-5 level and when I told him that the original surgeon says there is, he told me to tell him to show me the xrays.........????? What was that about?
Anyway, he didn't even read the reports, just looked at the old MRI's and CT scans, and said, you need to go back to your operating surgeon, I won't touch you. I told him that I wasn't asking him to touch me surgically, but to make a recommendation about my options.
He said, your options are to go back to your original surgeon and have surgery..........well gee, thanks buddy for your time and your bedside manner......
Oh, he did confirm for me that myelograms will not reveal stenosis or the nerve roots or the cord if the dye is put in at the level of the suspected stenosis, other than that , I didn't leave there knowing much more than I did when I went in there and he certainly had the bedside manner of a stick......
so, other than wasting my time and my insurance money........I got nowhere that I wasn't already..........sheesh........some of these guys can be rather arrogant can't they???

HI Sandi,
I'm feeling the same as I have all week, lots of pain & frustration. Thanks for asking. I had my first fusion in oct of 03, I was doing great, looked like it was fusing, no pain! for the first time in many yrs, then about my 5th month post op I started getting pain,lots of pain. Well bottom line is there was no fusion and I had 2 loose screws, I got those removed dec 15 04, there was no place to put new screws since the holes were too big from the original ones wiggling in there, so he packed in more BMP and we prayed that nothing moved before I fused. Needless to say thing moved and the was no fusion, so nov 11 2005 I had another fusion, first was the posterior (back) they did all they could do from that way and 4 days later they went in thru the front and finished, I was in such pain between the two surgeries they were giving me IV dalaudid every 3 hrs and IV steroids I would just scream the pain was sooooo bad. After the last one the pain was less (they got the pressure of the nerve) But I suffered perm nerve root damage because the same part of the same nerve was being comprimised every time the vertebra moved.

I am not "fixed" due to the amount of scar tissue in my back they could not put my vertibra back where it belonged, it is secured with 5 screws & 2 rods and there is two spacers between my two vert. that they filled with BMP along with BMP that they packed around my the outside of my spine as well. I have a permanent grade 2-3 spondy, they opened up the areas that the nerves go thru so there was no more compression anymore. But if that hardware gets loose or breaks I'm in big trouble.



I'm sorry this is so long, now you know the whole story and see why I always caution people to not wait too long, it took them from 98 to 03 to find out what was wrong and by them it was already too late to stop the nerve damage. If the first surgery would have worked I might have been ok but the repeated damage was too much to heal back to normal.

I do hope you have success, I just read your last post, it is hard to find dr's that are normal, hehe. It sounds like you did get an answer, just not maybe not what you wanted to hear? It is hard to make that decision to have a repeat surgery, I did the second opinion each time I know what your going thru.

Take a few days of not thinking about all of this and then lay it all out on the table in front of you and go over it, trust me it will make it all more clear to you.

Good Luck

God Bless

Carol

Wow Carol,
You have certainly been through the wringer with your back!!!!! I can't imagine what it's like to live with your kind of pain and no way of fixing it. I hope that it heals the best it possibly can for you and never brings you one more ounce of trouble.
I am sitting here complaining about my little problems when you are there trying to help me and yours are so much worse than mine........thank you for taking the time to answer them.
You are right, no one is telling me what I want to hear, and so it is not sitting well with me. My frustration is not helping either.
He really did have the bedside manner of a stick though , I swear :jester:
I don't know, I know what is coming, and I know that another day like today is not going to make me any happier.
I hate not sleeping, my usual is about an hour at a time, if I am lucky, I might sleep 4 hours broken up over the course of 24 hours. That is wearing on me as well.
I keep wondering if the OS did the right thing as far as surgery goes the first time around since the stenosis was also at L3-4 then but not as bad, instead focusing on the spondololysthesis and nerve compression at L4-5. If he had fixed things completely the first time around, I may not have found myself where I am right now. Maybe that's what's really behind my drive to find another opinion, wanting to make sure this time that it's all as fixed as it can be.....I think I finally figured it out.........thanks for letting me think this all out here. I trust my surgeon, I know he's one of the best around me, but I still think that he made a mistake in not taking care of it all at once, and now here I am.
I am worried about spending the rest of my life like this, I am 43, with 2 small kids and two teen girls. Not being able to do the things that I love, and want to do with my family bothers me. But the flip side is that if I go ahead with the surgery, and it doesn't even bring it down a few notches, then what? That's what I meant by the what is the length of time before the damage becomes permanent? I don't know if anyone knows the answer to that one.
So many questions, so few real answers, even for the doctor's. I wish that there were concrete answers for us all, I wish that I could fix us all.
Sandi

Hi Sandi,

It sounds like you got the answer, like carol said though, probably not what you wanted to hear. I think what the "stick" meant was to take your x-rays to the Dr. that said you were fused and ask he to show you where!!

I'm so sorry that your going through this, the unknown is scary. I know, I'm there too. Atleast we all have each other here. I sware, "I think all of us on here together", with the knowledge, surgeries and research between us, we know more than our Dr.s... hehe probably not, but it sure seems like it.

I sure hope you can get some relief, I will be praying for ya!! Take care and keep us posted on your decision.

Bernie

Sandi,
Please don't belittle your pain because mine sounds bad, all of our pains on here are just as bad as the others. I know how bad stenosis is, it was one problem that was fixed so far anyway. It is a bad thing. I have to agree with Bernie, I think stick dr. meant for you to have your dr. show you the fusion himself.

How I wish I could tell you at what point your damage is perm, but that does vary from one to another. I know how frustrating this all is as you can read in my new thread, lol. It gets down right madening at times to never get answers, just another pill shoved down your throat. I'm probabaly not the one to be talking to you tonight but i did want to respond to your post. Perhaps in the morning I will be in a better frame of mind.

May you have a sleep filled, pain free night, God Bless

Carol

Thanks Bernie. I am beginning to think we , our collective research leads us to know more than at least some of these doctors, but then again, who really knows.
I will see what my original surgeon has to say after he sees this last MRI on Friday. I have a feeling there will be a phone call from his office for me.
Other than that, I will be waiting and seeing all over again......sigh.
I am going to have a talk with him though about why a doctor would say that he can't see a fusion when the OS says there is. I want to see the last Xrays myself and he better be able to show me a fusion......
Then we will talk about the last myelogram and why they would put the dye in at the same level as the suspected compression......that makes no sense..... at least not to me and the OS yesterday......
So many topics, and lastly what we are going to do about these new problems that aren't really new, just worse than ever before.
Sandi

Mamma,
Thank you again for taking the time to respond to me when you have so much going on yourself.
I hope your dh is feeling much better very , very soon and that things calm down for you quickly.
You are a gem........everyone here is........
Sandi