Myelogram/Discogram Question

[jchebert1979]

I would like to know how long after surgery ADR surgery should one wait to have a discogram and/or myeolgram.

My reason for asking is because the many MRI's I have taken have failed to show the extent of the damage, this being proved by the scar tissue and inflamation seen in my recent ADR surgery. As I have said before this surgery has actually proved to be the best diagnostic test I have taken since the pain it alleviated is the exact same pain that I feel that corresponds to the remaining herniations.

I have called my doctors office numerous times and his nurse keeps telling me to wait until the visit on the 19th. I have tried to re-schedule an earlier date and she will not let me. She also said that invasive tests have to wait 6-8 weeks due to risk for infection unless it is an emergency. I will be calling the office back tomorrow and demanding an earlier appointment.

I cannot make anyone understand that the pain that I am experiencing is not related to my surgery or C5-6 herniation and it is intractable and unbearable. If there is a risk of infection I am prepared to take that risk as this is an emergency and I cannot wait 6-8 weeks.

To explain how much of an emergency this is, I am fully prepared to have another doctor order the test without his knowledge of my surgery. I most certainly do not want to have to do this but there is no way I can wait in this pain for 6-8 weeks for a diagnostic test because no matter what the results are, there will be more waiting on treatment plans.

I mean no disrespect, but please do not reply telling me that it is not a good idea because I already know that. Also please do not tell me to give the surgery more time as I know that my pain in completely unrelated to the surgery. I done trying to get other people to understand this. I will do everything I can to have my doctors support, but I if I do not, I will do this. If I felt like there was any way I could wait, I would do so.

I am asking for your help in making the most informed decision possible.

[fuzzy]

I had and still have (I beleive) the same problem, much more damage then was evident on the MRI and totally understated by the radiologist. It was clearly shown in my lumbar surgery. It is possible to have disc fragments that conot be seen on the MRI causing pain. A myleogram has a risk of infection and the european Dr's will do them before the americans will but at the same time the general consensus is if the rght Dr. reads the MRI for disk problems one should not nead a myleo, unless a MRI can't be made due to hardware already implanted. You really should only have this test if absolutely nessesary so it will be hard to convince a dr. to just order it. I wish you could go to europe. i know if Bertagnoly in Germany saw a need for a myleogram you would be having one the nest day. Ditto on discograms.

[jchebert1979]

All of my herniations have been evident from the very first MRI almost two years ago. The problem is that all of them have been ignored as the cause of my pain. I had no way of knowing that these doctors were incorrect until my recent surgery.

Now the only thing that proves that the pain is coming from the other herniations is my word. The cause has been documented by imaging over and over and it has been ignored. At this point if I could go to a surgeon and tell him I want T1-2, T3-4, and T6-7 operated on I would. I am that sure. Unfortunately I can't do that and it seems that the only evidence I have is not good enough, because if it were, the problems would have been fixed by now.

I will be working with Mark on options with doctors, but I am pretty sure that they are going to want more proof that what I have. This leaves me having to wait to for the evaluation by the doctors, wait for the tests to be run, wait for the evaluation of the tests, then wait for a treatment plan. I cannot wait anymore with this kind of pain. If I can decrease the time that I will have to wait by running these tests now, I am willing to risk the chance of infections. Or in other words, the benefits outweigh the risks for me.

[dshobbies]

J,

I hesitate posting because your pain speaks louder than any words. If you are willing to risk your health, knowing the outcome can be dire, there is little left with which to caution you.

However (come one, you knew that was coming) not informing any doctor of a recent surgery or your complete medical history may skew the results and negate any findings. Muscles are still healing and pulling and swelling has not yet gone down.

Another however is that pain is a very powerful motivator. It also diminishes or takes away our power of thinking. Your pain has taken over your every thought. This I can understand but for which I also have no advise. I've read your posts and know you're hurting and at the end of even trying to cope. There really isn't much more I can say other then I'm with you and holding your hand.

You are very much in my thoughts. No one should have to suffer this way.

Dale

[fuzzy]

I felt an improvement right after surgery but for more then a year there was a slow and continues improvement. BUT, BUT BUT,

It was obvious right after surgery that my problems were only half fixed. Here too one can argue my word (the patient with the symtoms) over theirs (they read books but don't know what it feels like), at least in america it seems. The Euroreans saw exactly what the problem is. The moment I went there is was all so clear. Here I got the eyes of incomprehension. After my American family doctor ("primary care physisian") saw my european papers he decided to read up a little and called me on the weekend to suggest NOT TO WAIT with the neck surgery. That came from my home doctor who *after studying up* was shocked how it is possible in this country to slip through due to the understated dry comments of the radiologist interpreting the MRI and nobody actually cared to actually READ the MRIs, LISTEN to the complaint and study up on similar cases. Many don't have time, some don't care. The top doctors in Europe do care and it show. I have never seen someone in the US who really cares, they do exist but the sytem (insurance) has to follow some mundane checklist unless you have a "land now" type of situation. If it gets complicated there is a tendency so say "go away" you are not a textbook case.

It is true there can me some really bad paiin from upset muscles and from the body readjusting after a surgery but within a couple of month one should know if it worked. You know your body best, things should improve or show some sign of improvements. If your pain is unchanged from before the surgery than chances are high its from elsewhere.

I agree with Dshobbies you should *not* keep your previous surgery secret! If the dr. finds out you will have NO MORE help but possibly be shown the door.

[jchebert1979]

Thanks guys, even being able to vent here helps a little. After seeing the pain that this ordeal is causing my family, when they ask me how I am doing I usually lie. As much as it hurts me to not to be able to express my pain to them, it hurts me even more to see the pain that my pain is causing them when I do tell them. The look on their faces knowing they can do nothing to help me makes me feel even worse.

Who knows, maybe tomorrrow's appt with the pain management doc will bring me enough relief to be able to go on.

Also I don't want it to sound like I am making decisions without thinking things through. I will not do anything rash without being absolutely sure that there is no other option.

[fuzzy]

My mom called me today to check to see if I made the surgery appointment yet and my siter offered to borrow against her house and wire the money to the hospital. The family cares and I do tell how I feel and I am trying real hard to be truthful, it is better that way.

[jchebert1979]

Here is an example of the type of ignorance that I have encountered every step of the way.

This is my latest thoracic spine MRI. It was done on 4-8-09 at my request because of the severe unrelenting upper back, chest and abdominal pain.

The report makes no mention of any thoracic spine abnormalities. A previous MRI reported herniations at T3-4 and T6-7. Oh and BTW on the flexion extension MRI the T1-2 herniation is touching the spinal cord.

[fuzzy]

Let me show you something very similar. This is a compilation I made of my last 3 neck MRI's. Same slice 1 year apart. C3/4 in the middle, look close. I was diagnosed with cervical Myleopathy in Germany after comprehensive neurological tests and finally this (made in Germany) MRI 07 2 years ago. It was suggested then that this will get worse and not wait too long to have cervical surgery (I had lumbar first due to severe pain and to see what happened to the other problems. Just as predicted still there . USA radiological report on the second and 3rd MRI came back as unchanged over the previous one BOTH times. Doctors say oh not so bad the problems can't come from that. My symptoms have gotten worse so here I placed the 3 MRIs next to one another in one picture . To me so obvious that I don't understand why this is NOT noted on the report. On the the most recent one C3/4 had made it all the way through the epidural fat layer to the spinal chord!! This is with my lying in the MRI machine. Lying I have the LEAST symptoms. Flexing my neck causes more problems! This is called flexion myleopathy. I have several studies here, well documented and surgery recommened written by DR. at the Texas back institute. One can asume that this compression gets worse when I stand up. In fact when I stand up in the morning within 10 minutes my foot tries to fall off. Looks to me each year this has gotten worse just like my symptoms have. So why does neurology not compare well enough and understate the obvious. Worse is sometimes Drs. read this report and don't look at the MRI. I do know of a knee dr. close by who makes fun of radiology reports as he does not read them until he is all done and then lets see what "they" wrote (and laughs...). I wish he was an ADR or neck surgeon as he would have my business.

Now the European doctors have always noted this where the US ones have not. How come? I honestly feel better there except maybe the best US specialist who I can not affort and still have less experience in the ADR field.

Look, what da ja think?
oops kinda the wrong way, the right MRI is the oldest one, look from right to left.

[jchebert1979]

I truly wish that I was the only one that this gross incompetance has affected. Your story angers me and frightens me at the same time.

I will not let them ignore me any longer.

[jchebert1979]

I called my surgeon this morning at was able to get a rush appt. to see him at 4pm.

I will be cutting things close. My PM appointment is at 1:30 and I have to drive a little over an hour to get to the surgeon. With the amount of pain I am in I shouldn't be driving that far, but I have no one to bring me. I don't have any other options.

The only reason I was able to get in to the PM before July was because of a cancellation. I can't miss that one either.

Whooo, stressfull day. I am hopefull for good things though.

[Dulishun]

Good Luck Man!

-----------------------------------------------------------------------------
L5S1 Herniation and Annular tear
Over 10 epidurals,
DDD, 2 discograms (positive),
Countless attempts at conservative therapy.
Surgery date 5-26-09