Is it normal for a doctor not do a discogram?

Cheryl · #1 (**permalink**) 09-10-2008, 07:04 PM

I went to the doctors today to follow up on the cervical facet injections that didn’t work. He told me “I don’t think there is anything I can do for you now, I don’t know what to tell you”. He offered me pain management only. He will not do a discogram. Is that normal not to do a discogram next? He said the results of cervical discograms are not conclusive therefore not worth the risk. I explained that I am at a pain level of 7 all day, I haven't worked in 7 months and I can barely care for my children at the end of the day due to neck pain. I understand the ambiguous results I went through all this with my low back. This ended up so ugly.

He actually raised his voice at me and I was in tears as he told me that the only option was fusion but it only works in 48% of the patients at c5-c6, there is a 12% chance of swallowing problems and 1or 2 in 1000 is quadripalegic. I asked if the quadripalegics are at his practice and he said no but they are in Charlotte and are in lawsuits.

I asked about disk replacement and he said he'd go through the appeals process but that United Healthcare isn't paying for it. Which of course I know all that. And I wouldn't let him touch me anyway at this point.

The MRI only shows mild degeneration which I guess is his hesitation but given my history wouldn't that be the next step?

Jim M2 · #2 (**permalink**) 09-10-2008, 10:19 PM

Cheryl,
I've always had the impression that in the States discograms aren't nearly as common as in Europe. Before lumbar ADR in Germany I had three U.S. surgeons recommend fusion and there was never mention of discogram. In fact one of them told me that CT-myleo was the last diagnostic preceding fusion.

48% sounds low. I've heard cervical fusions are generally successful, and certainly more so than lumbar fusions. There are surgeons today who just don't do fusions unless there is gross instability or other calamity. Your doc sounds like one of them, or for whatever reason he doesn't want to operate on you. Good riddance to him.

From what I've seen on these forums the amount of degeneration is not always a good indicator of pain or disc damage. Your thinking seems sound to me.

dshobbies · #3 (**permalink**) 09-10-2008, 11:03 PM

Cheryl,

Everytime I hear a story similar to yours, my blood begins to boil. There is much to much suffering at the hands of incompetent physicians and it's pretty scary. For a doctor to tell you to suffer because there's nothing else he can do for you... It's time for another opinion and possibly even another after that.

A thought, if your doctor refuses to do fusion and fusion or ADR are the only remedies, maybe you have a shot at coverage. You might want to read the book in Mark's library about ins. appeals. Mark, help me out here.

I hope you find a better doctor and good luck, Dale

Cheryl · #4 (**permalink**) 09-11-2008, 12:13 AM

I know my blood has been boiling all day. He was unbelievable. Although I can't believe I'm even surprised because I have actually met worse than him when going through all this on my lumbar spine. What I have noticed is that when I bring my husband along (which I did not do today) I get much better treatment. I hate that because I am so independent but it has been my experience several times.

I actually own The Insurance Warrior because we are in the process of appealing my two level ADR surgery but I feel like we are just going through the motions really.

And yes if this is a one level cervical ADR I should be able to have it covered but we all know the drill on that one.

I am tired, hurting and overwhelmed.

My only ray of hope is that my low back does feel pretty good after ADR so if I can get my neck in the same shape life would be manageable. I just can't get my head around the fact that I am going down this road again.

I know Mark understands

Maria · #5 (**permalink**) 09-11-2008, 12:13 AM

Cheryl,
In most insurances a 2nd surgical opinion is allowed and compensated by the carrier. Are you able to check and see if this is possible in your case?

My experience has been that Neurosurgeons don't offer discograms but OSS's do. Then again my experience to date has been with lumbar discography for myself (and/or myelograms for my lumbar spine in past).

I would want to get another opinion no matter if it were one via mail and I would want to pursue what at least you think you are entitled as best you are able.

Please don't bank on one surgeon's opinion. Even if he's right, raising his voice at you didn't accomplish anything but to upset you further and with the concerns/situation you have that was unnecessary.

Hang in there. Get some other opinions even if via email (not in person). Stay hopeful...

fireyangel76 · #6 (**permalink**) 09-15-2008, 08:57 AM

Cheryl,
I can relate to taking the husband with you. It is sad that you actually get taken a bit more seriously when your husband is there. If I have an important appt. or I have a lot of pain or new symptoms I insist my husband go. I am a nurse and I know my Dr.s and I still get that "neurotic female" treatment. I don't think it is intentional and I doubt they are aware of it. My husband being with me just seems to give them confirmation to my complaints.

So my Appt. last week it didn't work so well and I am just asking for a lousy MRI! Lets see...I might get the cervical MRI if the HMO LORDS approve it. However I was told that inspite of my continued back and leg pain 19 mos post Dynesys L5-S1 a lumbar MRI is not justified....wow...but yet he agreed and ordered the cervical without laying a hand on me and my cervical issues are new. He didn't even check ROM. Guess I am missing something here.
And the really bad news is, what he didn't tell me before my dynesys, I am not a canidate for ADR now. Seems he kinda brushed over that part before surgery....and this from a surgeon I worked with many years.
Seems I need to be less trusting and more proactive....
If I asked for a discogram I may have to give my first born child....

Maria · #7 (**permalink**) 09-15-2008, 05:28 PM

I edited this to say that if I want to bring strictly a support person along then I don't really care how much experience/education they have with regard to assisting me with my visit. By this I mean someone who's got my back as I'm just too exhausted to deal with it all.

Personally I've not found it that helpful to have my husband along except several times where he demanded I get more attention but not with my OSS visits. In fact I've found that at times the visits have been even more cursory/abbreviated. It probably depends on how the surgeon feels in terms of giving information/educating. Most of the times I've found that these are very busy people (surgeons) and they limit what they say unless you are a surgical candidate. Even then the information is often very abbreviated (IMHO). I was a practicing RN/NP for many years so this isn't surprising to me and doesn't stop me from asking as many questions as I can formulate on my own which is still limited when in shock sometimes from hearing something one doesn't quite expect.

Initial consultations are generally slated for a half hour to hour I believe (with xrays) and I like to have my questions ready on a list, tell the doctor/surgeon I have a brief list of questions that will go quickly and go thru them, cross them off while listening for any new or unknown that he/she might throw at me that I didn't have a question about so I can bring that up again or research it. I always ask for copies of my films and reports so I can go over that with the surgeon.

My preference would to bring Mark along to visits as I feel he is the most knowledgeable/experienced person that can review subjective/objective information and bring up pertinent questions and get the best answers (there's a comradery as the surgical experience is there and the surgeon jargon and all) and/or the next best possible educated/experienced advocate that I could find to bring along.

Otherwise I am probably bringing along someone more for support and that's helpful as well at times as what I might hear may be limited as I'm focusing only on what I want to hear/think/say and yes, my meds make me forgetful so perhaps someone not on medications would be pretty good to bring along to even write down what's being said by the doctor/surgeon. We can compare notes later and 10 to 1 I didn't hear something or remember it!

fireyangel76 · #8 (**permalink**) 09-15-2008, 07:17 PM

Maria,
You have a great point! It is really hard to be on your toes and ask all the right questions, comprehend the answers, and formulate any follow up questions when you are in pain and in a fog from meds, infomation ect. As is always said hind sight is 20/20!

Think that the only option may be taking Mark to an Appt! Even with all my reading and research it cant replace the "hands on type" experience he has gained. Just need my lotto winnings and to get out of the HMO nightmare!
How are you feeling?

Maria · #9 (**permalink**) 09-16-2008, 02:25 AM

Mark accompanied me to one of my most important surgical opinions/visits/consultations as it was a 2nd surgical opinion to decide whether surgery would be authorized by WC for the 2nd time (meaning WC verbally authorized two level ADR surgery in 03 for me but then rescinded this authorization when CA WC legislation was changing in 05). It took till '06 to get authorization again (now written authorization documented) and Mark went with me to that visit and I felt his expertise was beneficial in terms of communicating with the Neurosurgeon and how the outcome of my case turned out. Actually without him I'm sure I would not have even made it as the time of the appt. was changed by several hours because of an emergency the Neuro had to attend. By the time of the appt. I was completely exhausted and not even able to think straight let alone speak clearly for myself without groaning (thanks infinity Mark).

Ok, anyway, I do know HMOs are a pain in terms of authorizing and esp. if out of network (worked for managed care/HMOs the last 14 years of employment) so I do wish you all the best~ please keep us posted!

Cheryl · #10 (**permalink**) 09-17-2008, 09:52 PM

Well after that last horrific appt this doctors nurse actually took it upon herself to schedule me an appointment with another doctor. She ran it by my doctor so as to be politically correct but I believe this says alot about what she witnessed. In addition, my general practicitioner is copied on all my visits with spine doctors. He read the report and called to tell me to seek another opinion (in his politically correct terms). At least I know I'm not the crazy one here.

So, I am going to yet another doctor on Monday and I have a great girlfriend coming with me who definately will hear what I don't. Because my husband is going to be living it up in Vegas. He's gotta have some fun after the year we've been through.

Of course I would prefer Mark to come but the different coasts causes a problem. I'm going to have him consult with the doctors after I get the reports.

Thanks for all the support.

fireyangel76 · #11 (**permalink**) 09-18-2008, 01:03 AM

Cheryl,
Good luck Monday. I hope you get some answers and viable options.

Maria · #12 (**permalink**) 09-18-2008, 05:17 PM

Cheryl,
Good luck with next visit and hope you'll have your questions ready yet be ready for something unexpected should the next consulting surgeon make some point/suggestion/observation the last didn't. Perhaps your friend can be taking down what the doc says or have a small recorder in her pocket (hmmm.. did I suggest that/no)...

Glad you'll have Mark getting some other opinions for you and hope soon you'll feel confident with a diagnosis no matter what you do about it.

take care~ Maria

mmglobal · #13 (**permalink**) 09-19-2008, 10:06 AM

Cheryl,

Greetings from Straubing! I'm so sorry that you are having such a difficult time getting to someone who can help you.

It's interesting that while lumbar discography is becoming a more accepted norm, cervical discography is still lagging behind. I'm in the process of arranging cervical discography for several people in the US and I've discovered that a couple of places I've had it done have stopped doing them. It's relatively uncommon and not a huge part of their practice, so it it's controversial, they are demotivated and don't want to bother.

I believe that it is controversial BECAUSE it is rare and can be done improperly and can generate ambiguous or incorrect results. Those with little practice or experience with it will make mistakes and generate negative experiences and data. As with so many things, in the proper hands, it is a most useful tool. Done improperly or even interpreted improperly, it is problematic.

With the larger discs, larger canal area and more durable nerve structures in the lumbar spine; lumbar discography is less of a problem than cervical discography. With the smaller discs / smaller volumes in the cervical spine, I think it's easier to generate false positives. I have not heard of problems caused by cervical discography, but I'd be surprised if there aren't serious potential complications.

I look forward to hearing positive news about your appt. on Monday.
______________

Regarding my sitting in on Dr.'s appts: Thanks for all the kind words from everyone. I'm very proud of what I'm able to do. I've done this many dozens of times with clients from all over the world. It's been great to see when patients who've been dismissed by doctor after doctor and have not been able to get a serious look, actually are listened to and get their problems addressed appropriately. It is not normally needed (but can still make an important difference) in straight forward cases. In complex cases where there are multi-focal problems, patients are too often dismissed based on their demographic. Assumptions are made about secondary gain, drug issues, psych issues or other medical problems that overshadow new or previously undiagnosed issues.

"Your films don't look bad enough to cause the problems you are reporting."

I hear this too often in cases when the patient has additional spine problems or other health problems. If the patient was a 50 year-old CEO with no other health issues, the problem would be pursued aggressively. If the problem is in a 40 year old woman with prior spine surgeries, prior chronic pain issues, and who knows what else... the new problem is completely overshadowed and they never even get a fair look (by SOME doctors.)

In the past weeks and next few weeks, I have clients from Alaska, Utah, Georgia, Canada, New Jersey and No. Cal. coming to So. Cal. to see 5 different spine surgeons, 2 neurologists and a pain management specialist - simply because they are going to doctor after doctor and unable to get any help. I wish I could easily get all around the country to help folks like Cheryl, but it's not practical. (That's why my system of remote diagnosis is so useful! Usually, by the time the patient is seeing the doctor, there has been a review and a dialog, so the doctor is already engaged in the case and has been brought past the 'demographic dismissal'.)

I have to run... Bertagnoli will perform multi-level lumbar surgery on a client in couple of hours... next week brings a very interesting revision surgery with a completely new system to stabilize a tilted lumbar ADR. (Jeff - are you reading?) I'll write more when I get some time... this whole summer has been a sprint... I hope to get some time to relax and catch up soon.

All the best,

Mark

Cheryl · #14 (**permalink**) 09-22-2008, 08:47 PM

Just got back from the new doc. After going into all of the politics of his office and he himself called it a soap opera , He is “willing” to treat me. He’s a physiatrist though so he’s just doing injections and diagnostic tests. I will be getting another facet block injection with a different medication on c5- c7 next week. Next he’ll order EMG and CT myleography. Apparantly I live in the wrong city for a cervical discogram because he said no doctor in Charlotte will do them since someone was paralyzed and here is a quadripalegic who is suing the radiologist.
He used the exact quote that Mark mentioned above about my films not justifying my pain.

I am so sick of the doctor politics and egos I could scream. Luckily I did work in corportate america and I know how to "play the game" so I held myself together today with my friend by my side and at least we are moving forward now.

racergaldar · #15 (**permalink**) 10-14-2008, 12:32 AM

Any way for you to get Cigna or Aetna? They will approve ADR.

My case is worker's comp (much worse than private insurance) and I was told that if my doctor requested surgery they would automatically do a discogram; So if my dr got authorization for surgery I could get the discogram and not have to deal with that appeal process. I haven't verifed if this was true, but after you get a new dr, maybe its something you could ask about.

Tip: To find a new dr. Print out spine & neuro surgeons from your ins. carrier website and do some research to find whether they do ADR. Also, maybe if you contacted Mark he could help you find some.

Eddie G · #16 (**permalink**) 10-28-2008, 05:06 AM

I have been asking my surgeon for a discogram for about a year now. He was playing the wait & see approach. He doesnt do discograms unless he's doing surgery but I still had awful pain and finally on my 2 year ADR anniversary, I told him I can't live this way and something must be done. He finally relented.

Well.....I went for my discogram....I got stuck like a piggy.....and I squealed! Sweety went with me to Manhattan for support. I have to say it doesn't get any easier the second time around. I was a little nervous because I knew to expect pain....with a capital P. I don't look forward to any additional Pain in my life.
I don't have the results yet, but the good/bad news is that the L5-S1 did finally react. When I had my discogram in 2006, the L5-S1 did not react, or maybe not signifigantly more than the L4-L5 to cause concern, but it did show an asymptomatic annular tear 2 years ago. Apparantly it was symptomatic. Maybe the L4-L5 just looked worse than the L5-S1 and maybe the L4-L5 reacted more because it was more painful than L5-S1.
If the only solution for an annular tear is a fusion, I guess I'm ready. L5-S1 is a good level for fusion. I wonder if there is a non-invasive surgery they can do. I'm going to see Dr. Goldstein in a couple of weeks to discuss options.
I doubt a fusion would be as painful as a disc replacement. A fusion should be a walk in the park compared to what I went through with ADR. The fusion patient next to me in the hospital when I had my ADR surgery was up and walking around way before I did. He left before me too and seemed pain free!

Glad I had the discogram. Keep the pressure on the doctors if you feel you need one.

melodyl · #17 (**permalink**) 11-12-2008, 07:34 PM

My surgeon (Dr. Jens Chapman @ UWMC) is strongly opposed to cervical discograms. He advised me that cervical discograms were inaccurate, painful and possibly dangerous. Another doctor I was seeing for diagnostic injections had an opposing view and wanted to perform a cervical discogram on me. I trust my surgeon and did not have the discogram.

I need a 3 level cervical ADR surgery. Negotiations with my medical insurance company are on going.

Melody