to have my fusion undone or not??

to have my fusion undone or not??

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vivavegas
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Last seen: 3 years 11 months ago
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Joined: 08/24/2008 - 5:49am
to have my fusion undone or not??

Hi everyone im looking for advice as most of you will all know i have had a fusion but i was toiling with the idea to have it undone .im still not sure what to do.......only na little while ago i had decided no more surgery.....alot of u know that i sent my mri scans to a surgeon in germany and he said that my fusion canbe undone[I AM ONLY FUSED AT THE TRANSVERSE PROCESSES, I STILL HAVE MY DISCS AND I HAVE NO METALWORK IN, I AM JUST FUSED WITH THIS BMP STUFF.IT GROWS NEW BONE]......JUST INCASE ANYONE WAS WONDERING ABOUT A FUSION BEING UNDONE, I have spoken to the surgeon just the other day and he said that the bmp stuff is feasible to remove and that its not really doing anything[although it has eased my pain in the lumbar but just moved it on up becaus ei think the surgeon who operated on me straightened me a little i think.well he said he did and another surgeon who works at the hospital said last week he didnt he just fused me in the position i am in which is a scoloisis position btw]

Anyway this surgeon said that i do have a narrowed spinal canal and that he could remove the bmp and open up the spinal canal and make more room for the nerves but im scared.i dont want my spinal canal opened up although he nsays that i do have stenoisis on one side.........all i want is this bmp taken out and the fusion undone because i did not have any nerve compression before this fusion..............a surgeon at our local hospital looked at my mri and said that he thinks this stuff has overgrown..............but would it still effect nerves even if my spinal canal wasnt opened ..........i know my case is complicated but the weakness is getting really really bad and extremly scary at this stage.............i just dont know weather or not to go and let this surgeon undo all this and maybe end up worse...............but i think im my heart of hearts that it is this fusion that is the problem, but im also concerned that if he takes the bmp out that more will just regrow??

I cant do anything anymore and feel worse each day.also when thuis weakness comes it like weakens all the muscles in my legs and arms would compression in the lumbar effect the whole body, also im having alot of chills like im really cold...i would really appreciate opinions as this time i am either going to have something or nothing done but i know i have to make a decision...........i had decided no more surgery but.............well then i think would it help me or anyway how much worse can things get?/ thanks again everyone

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jewels (not verified)
Title: Member
Hi Viva!

Your situation is a very complicated one. It's hard to steer you in the right direction. What was the specialty of this doctor who you saw at the hospital? Did he feel that surgery would be the best option for you? If so, then I would probably go ahead with it. But on the other hand, you mentioned that this is in the lumbar region. As far as I know, and I've done plenty of research and asked planty of questions, the lumbar shouldn't affect your upper spine. Unless it's only affecting the muscles from the strain that your lower back is putting you through. Wow, this is a doozy! I believe that you told me that they didn't find any problems in your upper spine? Am I right? I can understand the legs being weak from the lumbar, but it really shouldn't affect your arms. Unless of course, as I said, it's muscle problems, such as strain and spasms. I'd like to know what this "other" surgeon feels would be the best idea, and then see what others on the board think also. Please keep me informed as to your final decision. I'll keep checking back to see how things are going here. You know that I'm wishing you all the best!
Hugs, >:D<
Jewels

Cali-Sue (not verified)
Title: Member
Wow, I have never heard of

Wow, I have never heard of such a thing and cannot find any literature about it either. Wouldn't it leave your spine unstable? Aren't your facet joints fused? Or first I should ask how long ago was your fusion performed? Did you have any bone removed at the time of surgery, such as lamina, facets, etc.? Have you tried alternative therapies to no avail, such as injections, PT, etc.? Has this surgeon in Germany done this same procedure many times before? Sorry for so many questions but I really do not know your whole story. Have you been worked up for any other causes of your symptoms? Arm symptoms and chills don't make sense to me for a lumbar issue. I always thought fusion was permanent. I don't understand how the joints could go back to normal mobility. Is the surgeon considering doing a different type of fusion after removing the posteriorlateral fusion?
I hope you can find some relief. Good-luck, Sue

Angelback (not verified)
Title: Member
Viva

Yes it would help to understand a bit more with answers to the questions that Cali-Sue asked.

I also want to ask you have you been thoroughly investigated for other causes to your symptoms. I know it is easy to assume that they have been caused by your surgery but maybe there is something else underlying it such as an auto-immune disease? Only guuessing here but a rheumatologist would be able to do a propper work up if he felt is was nexessary.
I know as I have lupus and fibromyalgia that one sympton can seem to be caused by one diesase when it actually isn't.
So please get all these questions answered before you decide or not on surgery.
Blessings Sara Angel

vivavegas
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Last seen: 3 years 11 months ago
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Joined: 08/24/2008 - 5:49am
cali sue and angel.thanks for ur replies.

cali sue.i am fused at the transverse processes and the german surgeon who looked at my scans said that the intervertbral joints arent destroyed in my case and that it is feasable to remove the cement pieces this is what he sent me back............we have carefully reviewed your pictures and have to state that your fusion has been done by a quite uncommon technique of just applying bone cement or bone material to the spinal processes, this normally leads to no stable fusion, the intervertrbral joints in ur case have not been destroyed, so the rwmoval of the cement pieces is feasible lso it is an operation which needs high technical skill the source of ur complaints is to my opinion not scoloisis but your pelvis is not in the proper level, there may be an underlying difference in the leg lengths however in addition there is seen a spinal stenoisis at th l4/l5 segment which leads to some impingment of the nerves in your case one can try as a trial of healing to remove bone and free the nerves at l4/5 segment however one must admitt that the success rate will be lower than in other procedures.......

As regards to the surgeon who did my operation removing any bone no he didnt, i think i read facet decoraitated or something like that...........i am seeing a rheumatolagist on 22 and a neurolagist this sat morning so hopefully i will find out more..............the thing is it seems to be like i can feel my joints one minute and cant feel them the nect minute..they go all numb and cold and if they are not like that then one knee is on fire and so i can feel my joints am i making sense..............a surgeon at our local hospital said he fused me in the position i was in and with scoloisis u have a tight side and a weak side of muscles and im wondering has this bmp stuff taken in such a way that its effecting the nerves to my joints/legs u know what i mean maybe i had some lupas thing arthritis going on but this bmp stuff is like effecting the nerves and therefore giving me crazy feelings and symptoms.am i making sense.put it like this.its like i can normally feel my joints sore and inflamed[particularly on one knee].and i feel hot in back and ribcage and then all of a sudden the tone of the muscles change and the knee joint pain i cant feel.it like goes all numb

vivavegas
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Last seen: 3 years 11 months ago
Title: Member
Joined: 08/24/2008 - 5:49am
thanks angel,cali.sue and jewels for replying to my post

Just wanted to say thankyou girls for responding to my posts i really really appreciate it.... :X :X :X .....u think its possible that this bmp if overgrown could be effecting my nervous system..is the nervous system the spinal cord??............u think its possible i for got to mentio that it says on mri changes more evident on the right.u think it possible that one side could be like pressing and effecting the nerves.its like i go one minute from having and feeling my joints and then to numb and like no power in muscles..............i know guys it is very complicated....and i thank u for trying to understand...........thanks!!!

Cali-Sue (not verified)
Title: Member
Hi Viva, your nervous system

Hi Viva, your nervous system consists of the brain, spinal cord, and the nerves roots that exit the spinal cord and go throughout your body. Some of your symptoms really don't seem like lumbar spine. Do get all those workups done to see if you have some other problem.

I asked my surgeon if he has seen any problem with the BMp overgrowth. He said he has used it since 2002 and hasn't had even one patient with it yet. He said the risk is 1/2000 from the literature he has read. I have the posteriorlateral fusion of transverse processes as well as the interbody fusion. He said the bmp, bone grafts, dbm are held in place by the tight muscles and shouldn't move, but it is possible. He said it was not near the nerve roots. When the report says they decorticated the spinous(transverse?) processes it means they used a drill to grind up the bone surface so it can take a fusion. They have to do this or it won't grow together.

I do hope you find some answers soon. Anytime you redo a fusion I think the success odds go down. Have you had any LESI's? Sometimes these injections can help pinpoint where the pain is coming from. There is also things like morphine pumps, or SCS for chronic pain when all else fails. How about meds such as neurontin or lyrica for nerve pain? Keep searching until you get some answers and some relief. Good luck, Hug Sue

Angelback (not verified)
Title: Member
Viva

Gosh, it really is a whacky one isn't it.

I really think you need to get seen by these other specalists before seriously considering more surgery. It could even be a combination of things that has caused all these symptons so you need to find someone who can look at the bigger picture.

Also when I had my surgery done, I had developed quite a scoliosis (dont remember the degree) and the surgeon made sure I had a standing x-ray just prior to surgery so he could repair the scoliosis as much as possible. Did you have an x-ray before surgery for the Dr to work from?

Please let us know how you go with these other appointments.

Blessings Sara Angel

Chrissy1311 (not verified)
Title: Member
Wow Viva

Hi Viva,

Not sure if you remember me from the chat room, but we have talked a few times in there.

I really had no idea how complicated things are for you intil I found this post.

Making a decision for more surgery is always a tough one! All the what if's and the risks etc.

Your case is very complicated yes, but in the end your decision will be based on what info you gather and your quality of life.
For instence..I just had the typical ACDF with plate and screw but the Ortho Spine surgeon told me because I had NO cord cpmpression and I essentially would be haiving the surgery for Discogenic pain the percentages were be 50-50 for success rate of the surgery. He said what is your quality of life? I replied what life!

Now I understand your case is much more complicated, but in my personal opinion even though some of the things the docs have mentioned that are or are not "text-book" cases comparisons we all know that "anything Goes" we just never know how are bodies will handle thing.

No I do not really know a lot of the type of "fusion" and the materials they used to do so. in my personal opinion I do feel that the nerves could and more than likely are being effected by the possible growthor overgrowth at the site of your fusion.

I think if I were in your shoes, as hard as the thought of another surgery is, I would do all I can to investigate this German docs asseement..maybe he has some patients that would be willing to discuss their outsomes to you. Don't know if this is possible. I might try to find a teaching hospital in the US that could give you more information on this process, although I am guessing if you searched out this German Doc it might have been because the US docs could not give you what you were looking for and you need Extra eyes and different perspectives.
Also I would try..as much as the thought of all these little procedures just erks me because I never had luck with them, I would have do try to do my best with the least invasive things first...which you may have already surpassed this stuff. IMHO...certain meds are only prolonging things and making you comfy while the actual problem "may be growing and/or getting worse.

So I hope some of the things I have said will help you in your process of figuring out what to do! This is no doubt a tough one!
For me its like if there are more things to try lets try them..., but along with this decision has to come a level of being able to deal with WHATEVER the consequence may be! Wether good or bad! This is the tough part for me! Getting to a place within myself that no matter what the out come from a procedure or a surgery am I ready to accept what that might be...
With this last surgery I had, i felt it was a HIGE risk with the success rate being 50-50. But at the same time..I could barley do anything and I had no life and can not work. I still can't work as of yet but I am only 1 month today post op.

Viva,
you are more then welcom to PM me anytime you like for added support! i am more than happy to be there for you in any way that I can. Just remember, and I am sure you already know this...that you and only you will be able to make the best decision for yourself! It does help to have all of our input..I know I could not have gone through all I have gone through without the love help and support of all of you!!

Chrissy

itsalongwalk (not verified)
Title: Member
Doc Confidence

Hiya,
I am no doctor - just a pateint recovering like many others here. Your query makes me think.

BMP (I have this inplant)- i hear that some ppl can be allergic to it. In theroy i understand what the surgeons say. if you have no hardwear and your vertebra disc is not fused then with a skilled surgeon i expect it will be possible to reomove part of the overgrown bone which sounds like it is causing a stenosis type problem, which decompression seems to be the common answer. All sounds do-able.
I would trust you instincts on this and the doctor. his is complicated and unusal surgery so only a competent and confident surgeon will take it on.
good luck

vivavegas
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Last seen: 3 years 11 months ago
Title: Member
Joined: 08/24/2008 - 5:49am
thank u all so much.

Sad Brokenheart Sad Brokenheart Sad ..........just thouoght id say thank you AGAIN lol to all of you who replied, I can tell that you all took alot of time and thought in answering my post and it truely means alot to me, it really does..........to know that people have actually taken the time to think about my problems when they have enough of their own.......The thing i forgot to mention is right,it says on my mri scan changes more pronounced on the right and thats the side i used to lean to and couldnt straighten up .but now i can, im thinking that with the weak muscles then maybe some of the bmp stuff has moved............someone said it could be possible maybe the tight muscles have held one side in place and the other stuff is all over the place.ahh i dont know anymore, yes calisue i agree with u i just dont think its this surgery i think i may have other things going on too but i could cope with them its this wekness that i cant cpe with, i have also noticed that when the muscles on the right side go weak then the diaphram muscle goes weak too........again perhaphs it has something to do with the straightening...........my discs are in bad shape, i really am at a loss as what to do i think deep down in my heart if he undoes this fusion then i will be back to the bad bad pain but i can take meds for that with this weakness theres nothing i can do, .i just dont want this surgeon to open up my spinal canal...i would rather this bmp stuff just be removed he said he would prefer to open up the spinal canal but i dont want that cause i think its this bmp stuff.although a surgeon at our local hospital said to me the scoloisis is the underlying problem here, its a nightmare but i think my gut reaction is to get this stuff removed.i think someone else enurse it caused her problems too, but the thing i am concerned about is the surgeon having to open me up again, he said that he cant do minimally invasive surgery cause of the previous operation and that i would have to be opened up u know open back surgery................i think in my heart of hearts i have no choice but to go with this.........like the longer its left in then , its probably causing muscle wastage