Hello Tom,

Welcome to this forum!!!

I HURTS to read of the pain that you are now having since your surgery. I am not a doctor, just a spiney like most here, however, something is wrong. You should not be going through what you currently are.

Tom, I would highly recommend that you seek the advice of addtional spinal surgeons. You REALLY need the advice of other doctors than just the one you have been seeing.

Look for the very best spinal surgeon in your area. Make that appointment and take your MRI images with you. I hope that you can see these spinal specialists BEFORE you have your nerve test on September 3rd.

Take care. I wish you the best. Let us know how things go.

RichT

Hi Tom,

So sorry you are back in so much pain again.

You said you had a L4/L5/S1 fusion, but did not mention if instrumentation was used. Did your doctor use any hardware with the fusion and if so what hardware did he/she use?
Did your spinal surgeon use BMP with the fusion?
Have you had any x-rays and/or CT scans to determine if are or have begun fusing and if you are fusing how far along you are?

There could be many reasons why you are having the pain you are in, but the first thing your spine surgeon should have done are x-rays and CT scans to determine that status of the fusion process. MRI pics will not clearly show that, which is why the CT scan is usually used.

Having your spine surgeon say "i don't know why" and ordering EMG tests is not a good answer.
Those EMG ie nerve tests may or may not show a nerve problem, but if they do, it still imperative to search for the answers as to why.

Looking at those CT scans first would be the preferred route.

Many possibilities abound for the cause of your pain.

If I where you, I would be looking for another opinion ASAP, before the nerve tests are done. You will need copies of all your MRI and any x-rays or CT scans that where done before your surgery and any that where done after your surgery to bring with you.

The first place your spine surgeon should be looking at for the answers is the internal surgical area, I.E. the fusion and the process that is going on there, not the EMG.

Good luck and let us know what you find out and how you are doing.

Fran

the doctor did use hardware he told me that he used a cage as well as rods and screws. he has also done mri, catscan, and x-rays. the fusion is also doing very well.

Tom,

My gut feeling is that you need to gather up all your pre surgery MRI, x-rays and any other tests that where done before surgery,
Also get your surgical reports and all the post surgery MRI, CT and x-ray films and get another opinion or even 2 or 3 other opinions as to what is going on now.

I would be looking for the best you can find in both an orthopedic as well as neurosurgeon that specialize in spines to seek other opinions.

A fresh pair of eyes on all of these results and knowing exactly what the spinal surgeon did in the OR is a good idea.

It's unfortunate that it happens but it is far too common, that a surgeon of any kind is reluctant or refuses to admit that there is something wrong with the surgery that he/she did.
It isn't just spinal surgeons, but doctors just don't want to admit that they are wrong or that they are unable to see anything wrong and suggest that you seek the opinion of another surgeon, or doctor for that matter.

In my own personal experience, I have found far too many spinal surgeons and even just orthopedic surgeons that specialize in various orthopedic problems are unable to read an MRI and base their entire opinion on the doctor that reads the MRI or CT or x-ray scans. That to me is criminal and should be required to be an ortho or spinal surgeon.

Possible problems that are causing your pain, could very well be a damaged nerve, but there are still reasons for it and possible things that can be done to prevent the continued pain you are having. But doing just the nerve tests only gives answers about the nerve and not a cause.

Though I am not saying that any of these following possibilities are the cause and I AM NOT A DOCTOR OR EVEN IN THE MEDICAL FIELD, I JUST DO KNOW SOME MEDICAL INFORMATION AND I DO PERSONALLY KNOW PEOPLE WHO HAVE HAD THE FOLLOWING PROBLEMS POST FUSION AND HAD TO SPEND A LOT OF TIME RESEARCHING AND GOING TO DIFFERENT DOCTORS FOR OPINIONS TO FIND THE CAUSE OF VERY SIMILAR OR THE SAME POST FUSION PROBLEMS.

I would be wanting to know if any of the following could be the cause of the pain you have now.

1. The most common cause of failed spinal surgery for nerve decompression, especially in the lumbar spine and also not always done with a fusion of the lumbar area is the widening of the lateral recess. If this is not done, even with a fusion, then the nerves can become entrapped in the lateral recess and then pain from the nerves will return and spread down the back butt, back of thigh and down through the leg, ankle and feet. Until this area is addressed it will not stop the pain.

2. Where the proper size screws, rods and cages used and are they still in place or have the moved and are causing pressure on the nerves.

3. Are there any bone fragments that where not removed during surgery and they are pressing on the nerves and starting to fuse with the fusing process.

4. Is there overgrowth of the bone that can happen and that is pressing on nerves. This can sometimes happen if BMP (bone morphogenic proteing) and becomes a problem in the formation of scar tissue.

5. Is there scar tissue forming that is wrapping around the S1 nerve and now causing the problem that you are having.

AGAIN, I AM NOT SAYING THAT ANY OF THESE ARE CAUSING THE PAIN YOU ARE HAVING, BUT THEY ARE POSSIBILITIES THAT COULD BE CAUSING IT.

They are things that should be checked into and the best way to have that done is with another, fresh pair of eyes looking at everything. I.E a new spinal surgeon.

One of the reasons that I suggest the above issues as a problem is I have a friend who lives in the midwest area and had the same surgery you had with the same hardware used.
She was doing fine post op for several months and then all the problems returned, with pain just like yours.

He return visits to her spinal surgeon, whom I might add was not of her choice but rather a WC spinal surgeon that she had to use, could not find anything wrong.
Same as yours.

All the same repeat tests where done and EMG for nerves.

Now this woman is in her late 30's and was an active nurse in a busy city ER.

The surgeons only suggestion was to have a SCS (spinal cord stimulator) permanently implanted to deal with the pain and retire from her career and live with the pain.

She was so desperate for pain relief, she has young children and was injured at work, that she decided to give the SCS a trial run before the permanent one was implanted. She had instant relief of pain for about 2 weeks before the temporary SCS was removed and she had to wait a month for the permanent one to be implanted.

During that time I was finally able to get her to fight WC and get a second opinion with another spinal surgeon.

WC agreed to pay for the second opinion because it was a lot cheaper to do that and maybe find out that she needed more surgery, which would also be cheaper than over $250,000 for the SCS implant.

A second set of eyes on her films had the second opinion doctor figuring out what was wrong, but to be sure that the S1 nerve was involved he did a brief diagnostic nerve block to the S1 nerve, using a small amount of lidocaine. She was with total pain relief for 2 hours. He also had a fresh set of MRI pics and CT scan done as well. He felt the MRI and CT scans she had done where not clear enough.

He found that the wrong size screw was used and the cage had moved. and there was scar tissue wrapped around the S1 nerve caused by bone fragments that where left.

She had surgery with this new spine surgeon a few days later. He removed the screw and cage, removed the scar tissue wrapped around the bone fragments on the S1 nerve.

10 weeks later she was back at work part time with no pain and going through PT.

It's know about 20 weeks post her revision surgery and she is back at work full time and has no pain problems.

All because she got a second set of eyes on everything and she almost settled for a life of pain with an SCS and retiring from nursing.

Tom, go get another set of eyes on all those films and see what you can find out.

Best of luck and keep us posted on all that happens.

Fran

Hello Tom,

EXCELLENT thoughts and words of advice from Fran. Do listen and "hear" what she is writing to you. She gives from her heart!!!

Tom, if only all of us had a spinal surgeon as skilled in surgery as he is in communicating with Fran, then we could rest much more easily. THAT is not reality unfortunately. I have been to 6 or 7 spinal surgeons, 1 neurologist, and 1 pain management doctor. You would not beleive the differences in opinions. That does not make making a decision on what to do easy, however, far better than just blindly going with the opinion of one doctor.

Need any help in finding the best doctor in your area, then just let me know.

I hope all goes well.

RichT

How would you go about finding the best surgeon "in your area".
I'm basically in the same situation that Tom was...
Thanks Rich !
Steve

Hello Steve,

If you live in an area where there is a professional sports team give their office a call and ask to speak with someone in the training department. Ask that person which spinal surgeon they use for their very talented and EXPENSIVE players. Professional sports teams want the very best doctors for their players.

I called one of our local professional sports teams when I had a torn rotator cuff. The doctor they suggested was GREAT. When I started to have back issues, I again gave the team a call. In both cases the person I spoke with never hesitated in giving me the names of the doctors they used.

Also, speak with those you know who have been to spinal surgeons. Find out how they liked the doctors they went to, both the good and the bad.

Call your local hospital and ask the person you speak with which spinal surgeon they would use if they needed to have spinal surgery. And if at all possible, try to speak with an OR (operating room) nurse. Ask her/him which doctor they would use if they needed spinal surgery.

Once you have your list together, call the doctor who is at the top of your list and make an appointment. Next, call the doctor next in line and make an appointment. It is ALWAYS a good idea to get a 2nd and even a 3rd opinion.

I wish you the very best.

RichT

Calling professional sports teams and calling hospitals and OR nurses may sound like a good idea, but you are going to find no one to talk to.

Unless a pro sports team makes the information public on what surgeons are or are not used by the players or team, you will not be able to get the information from them. It is kept private by the teams

I know far to many people across the country that have tried this idea with professional teams with no more result than "that information is private and we do not give out doctor names to the general public."

If you really think you can just call a hospital and ask to speak to OR nurses or recovery room nurses or any staff about a doctor's name and referral, you are living in a dream world.

Hospitals in general aren't going to give you that information, OR nurses are called just that, operating room nurses. They are in the OR with doctors during surgery and transporting patients from the OR to the recovery room. They are not available by telephone to speak with, nor do they have the time to answer phones and talk with the general public for doctor's names.

If you think they have time to talk with you, then you do not want to use the hospital, surgical suites and have surgery in that hospital or with those doctors and nurses.
They wouldn't be doing their job and it would be dangerous to use them.

Recovery room nurses are just that, recovery room nurses. They do not take phone calls from the general public, they are far to busy caring for and monitoring post op patients, as they should be.

If they where to take general phone calls from some person on the street, again, they wouldn't be doing their job and you wouldn't want to use that hospital or surgical people because the post op nurses are spending time on the phone with the general public giving out doctors names to people.

If you think you can just roam onto a post op floor that has spinal patients on it and start talking to nurses about doctors, you are equally dreaming as well.

Nurses are taking care of patients, dealing with families, doctors and any emergencies that may or may not happen.
There isn't enough time in a day, let alone a nurses shift, to have the time to talk to someone that just shows up off the street to ask questions about what doctor they would use.

I have no idea where you live Rich or how the hospitals are run where you live, but believe me when I say, that no way on earth would any hospital in the boston area, outside of boston or in the suburbs every do what you have suggested.

As a matter of fact, today I tried your idea at every major hospital in Boston, outside of boston, outside of Lowell, some smaller community hospitals.

The results where no one would give me info on a general call, couldn't get access to the OR or recovery staff in 98% of the hospitals. the few I did get to where furious at my phone call, had no time to be bothered nor was it their job to answer my questions or name doctors and slammed a phone on me.

Then I tried the major sports team offices in Boston. No possible way to get the information.

If you personally know the right people to gain access, which I will add that I do, then you can get the answers to questions that you are telling people to ask and where to go call to get those answers.

On the other hand, most people do not have the access that I do, or know the people to call directly, and they will have the same results that I have had just making the calls that you have told people to get,and the people that I personally know have tried to get and couldn't get.

The best way is to do research on doctors. Check with the state board of registration about doctors, how insurance companies have rated the doctors and ask people that you know. Someone will know someone that has used a spinal surgeon or and orthopedic surgeon and you can go from there.

Good luck

Fran

I found these posts quite interesting. Reason, my husband, 9 weeks post-op; spinal fusion with instrumentation of L4-5 and S1...... The pain he went in with feels pretty good but he AWOKE,YES, AWOKE from the surgery in extraordinary HIP PAIN... we go for a CT MYLEOGRAM this week... after nine weeks of constant complaining, the neuro is finally sending us for this test... since he awoke in the pain, makes me think there is something wrong....... maybe the hardware is not settling right with him or a nerve being pinched.... his right hip goes into what I describe as; he goes into so much pain only in his right side that his body short circuits for a number of seconds and then stops... this goes on all day long for nine weeks........ IMMEDIATELY UPON WAKING HE HAS BEEN COMPLAINING OF THIS PAIN THAT HE DID NOT INTO SURGERY WITH......... GO FIGURE............ VERY UPSETTING...

I'm sorry to hear that your husband is suffering with new and immediate pain in his hip post fusion.

My first thoughts would be did he have bone harvested from his hip for the fusion or was donor bone used?

It is not uncommon to have hip pain if the doctor took bone from the hip for the fusion.

It's good that the tests are being done and hopefully you will have some answers this coming week.

Please keep us posted on what the tests results are and good luck to both you and your husband.

Fran

Thanks for the feedback... Donor bone was used for the graft so that has already been ruled out... Since he awoke from the surgery and immediately was feeling this "hip" pain leads me to believe it is something nerve related. Will keep you posted after the CT Myleogram, which is set for Thursday....

Good luck vikingfan,

Will you have test results right away or will you have to wait to see the doctor with your husband?

Fran