Conflicting diagnosis & now recommending DIAM

[Katie]

I have had two MRIs (the latest in Nov 08), two CT scans and several X-Rays. All have said I have mild to moderate arthritis in a few of my facet joints.

I had a diagnosis from Stenum hospital a year ago, recommending ADR in C4/5 & 5/6, as well as L4/5, L5/S1. I specifically asked about arthritis and was told there was not enough to be concerned about.

I sent my records to another overseas clinic a few weeks ago, and got their diagnosis yesterday. They said while I have two herniated cervical discs, only one requires ADR, and I also need DIAM on L3 to S1; because of extreme arthritis on the facet joints, I am not a candidate for ADR.

So a few questions for the masters at this game ;-)

-can my facet joints change that fast? (Stenum only saw the MRI from Nov 07, not 08)
-can the diagnosis vary that much?
-Is DIAM the new replacement for ADR? I have been frantically looking up all I can about it on the net, and it seems to be exactly that, according to the manufacturers. If a person is not an ADR candidate, then this is the way to go...relieves pressure on the nerves, the flava ligament, etc., and reduces or eliminates pain from the compressed nerves & discs. It looks pretty slick and so much less invasive than ADR, which I've been fighting to have for over a year. It is hard to switch directions so quickly!

What say you?

[Terry Allen Blackburn]

A one year period of time is a lot in the world of us spineys. I had no facet arthritis on my one year earlier MRI's of my spine. One year later I had mild to moderate facet arthritis and went to have the four level ADR surgery at Stenum. I had the same levels as you have. I'm sorry that you have had such deterioration of your symptoms.

Terry Newton

[ImpOssibleOne]

On the other hand, MRI results are subject to interpretation. Looking at the same MRIs, Kaiser said I was definitely not a candidate for ADR because of facet arthritis and UC said it was too minor to be a factor.

Is there any way you can get the 08 results to Stenum? Might be good to have the same person read them both.

[Katie]

Really, Terry? I thought this do-nothing lifestyle I have been forced to take would have slowed down the deterioration.

Imp, I called Stenum last fall and asked about the arthritis being a problem when another doctor here told me that arthritis was a problem with having an ADR, and they assured me that it was so minimal as to be almost non-existent. (That local doctor did not offer any other treatment though, unlike this new one.)

I am thinking of sending Stenum the second, most recent one, but have the feeling that they will only do one diagnosis, that they are too busy to do a second unless I have definitely booked a trip. That could be my conscience talking though, with not wanting to 'bug' them.

[dshobbies]

Katie,

I am sorry for you problems and conflicting diagnosis just turns you around in circles.

You've basically got one shot at making this right. Going in the wrong direction or making the wrong decision is a scary thought and who's right? Who should you believe?

Have you considered sending your history and films to Mark? His fees are low enough and the peace of mind in getting opinions from the best of the best is worth everything. GPN Artificial Disc Replacement ADR

Personally speaking, I wouldn't trust Stenum, I've heard too many and severe horror stories but I'm obviously not speaking for everyone. However, we all have only one spine and making the wrong decision which may cause a revision surgery is way too costly in terms of your health. You want to rid yourself of pain and get on with your life. You owe it to yourself to explore your diagnosis and options before committing to any doctor. Even if you do end up with Stenum, you should be absolutely positive you're doing the right thing.

Good luck, Dale

[trkdoc714]

Katie,

Without trying to sell you on or against a surgeon or medical service, I'd like to offer some advice.

Both my wife and I have been mis and maldiagnosed. Had I listened to the first, second or thied surgeons, I'd have 4 vertibrae fused together today. My wife would be in a similar state.

Most surgeons are going to diagnose and prescribe procedures that they are comfortable with. If I were in your shoes I would make appointments with more specialists for more diagnosis. This is ultimately what we did although it wasn't planned that way. With several opinions rendered, you should be able to see a pattern and commonalities in the diagnosis. This helped Vanita and I choose what we both feel is our best option.

Good luck Katie,

Bob

[mmglobal]

Diam is one in a huge crop of interspineous devices that came out several years ago.

Fixano U, now Coflex; x-stop, wallis, and many more. Typically, they are motion limiting devices instead of motion perserving devices, but will allow more motion than fusion.

The new Disc-Motion posterior ADR with spinal stablization is in play for people who want motion preservation but not fusion. I'll be writing more about this later in the week as I've seen an implantation and have discussed it pretty extensively with Bertagnoli.

[johnb]

Advantage of the DIAM is that it less invasive compared to some other procedures and can be removed without too much invasiveness so other, possibly more aggressive (and probably more invasive) treatments being available on down the road. As far as facets go, mine were pain generators and were bone rubbing on bone and fused while I had the dynesys implant on my spine. In fact, they started to fuse in the first 3 months of having it implanted. (can I assume that my body will generate bone if I have a anterior fusion?) The DIAM should distract your facets so they aren't rubbing on each other all the time and open the lateral canals if there is stenosis there. The implant is sometimes combined with a decompression procedure. My facets deteriorated pretty fast once my disc height reduced. Also, my surgeon said my facets didn't look to bad on the MRI and yet they were painful. Point is, don't rely on MRI to determine if your facets are painful. The standard is diagnostic injections to test your facets. All the medical journals I've read say that the injections should be used to rule out ADR if your facets are painful. I've read anecdotal evidence of ADR helping facets by aligning things but I don't know of any double blind well designed clinical testing to support this possibility. I've seen posts of patients so there is some anecdotal evidence. However, I need science to back up claims when it comes to my health and spine. Anecdotal and case studies are not enough when it comes to my spine.

I've read most of these articles on facet joints on medspace which is a great resource. Medscape Search

The article on bone scan with SPECT was very informative Log In Problems

[Terry Allen Blackburn]

Originally Posted by Katie

Really, Terry? I thought this do-nothing lifestyle I have been forced to take would have slowed down the deterioration.

Imp, I called Stenum last fall and asked about the arthritis being a problem when another doctor here told me that arthritis was a problem with having an ADR, and they assured me that it was so minimal as to be almost non-existent. (That local doctor did not offer any other treatment though, unlike this new one.)

I am thinking of sending Stenum the second, most recent one, but have the feeling that they will only do one diagnosis, that they are too busy to do a second unless I have definitely booked a trip. That could be my conscience talking though, with not wanting to 'bug' them.

I do believe that Stenum will read your latest MRI for you. It is worth a try. As far as your body it ages whether we are active or inactive. Would it be otherwise, I would just as soon be 17 and not make some of the same lifestyle choices that led to my issues with my spine. I used to smoke cigarettes that rob the discs of vitamin c, harden the discs and makes them brittle, subjecting them to potential ruptures. Four ruptured discs later I am living proof that better decisions might have made a differing outcome for me. Not that I am complaining mind you. I am the proud recipient of four Artificial discs in my spine that have given me a new lease on life.

Good-luck with this.

Terry Newton

[trkdoc714]

I agree with Terry (the ex-smoker rubbing my nose in my smoker status ).

The team at Stenum seem to be very accomodating. As they have a reference point from your earlier films, the review time should be minimal.

I still stand by my earlier post though. With multiple diagnosis, you can find a commonality from two or more that may indicate the base problem instead of focusing on conditions caused by the true culprit.

Bob

[Katie]

You guys are awesome! ;-)

Getting another reference or two sounds like the best option. I finally have an appointment coming for a doctor in another province who does Lumbar only, I believe. He was referred by two other 'spinies' ;-) I just got an email from him saying that he will put me on his list. When I get in is another matter......

So that will make three, at least for my lumbar.I was able to see a neurologist here last August who also treats two other Stenum patients for other matters. They gave me the impression that he was very happy that they went over (although he didn't refer them) but when I finally saw him, he said he had no confidence in ADR at all, no matter where it was done. I was crushed, as I thought I finally had an advocate for my government fight to get over to Germany.

Anyway, he poked and prodded and ordered the second MRI, and said he would refer me to a NS. He did see me again in December for five minutes to poke around again, and said that my cervical area was 'somewhat urgent' ?????. I haven't heard any more since. If they ever do recommend anything here, it will be fusion, which I will not have. That would be the fourth opinion. What a great system.

What I'm trying to say is that it is very difficult to get 'other opinions'. I understand that Dr. B. does it, but for quite a fee (over $450 cdn). I just don't have that kind of money to spend right now, unfortunately. I may try to send something to Mark, but don't want to take up his time without reimbursing him as well, as I understand that this is his living.

I have been lucky enough to have met at least a dozen Stenum patients in the last year, some just less than an hour from me. All have been very happy with their results, so I am going on first hand reports. Every doctor has bad outcomes, depending on the individual case, and I have to trust someone. My husband has lived in Germany, and said that their automobile garages are cleaner than our hospitals, which I believe, having spent a great deal of time in them with family members. The infection rate here is astronomical. So yes, I trust them a lot more than any here.

My other issue is that I am soon having a government medical appeal to get funding for ADR, and the application was for Stenum. If I am lucky enough to get approved, and I believe I have a strong case, then I will have to decide fairly quickly as to what I'm doing. Until then, I'm not going anywhere. This four level surgery will cost ~$70,000, including economy airfare, at least to Germany.

I am starting to investigate other countries now, just in case, ones that won't bankrupt me. Anyone have good stories about that?

[Katie]

Sorry for another question...

Is the DIAM a good alternative? It seems to be the best of the pack, not having any metal to irritate the bone, and they all have been approved now. While they do not allow as much motion, it seems that they would be much better than fusion, and much less invasive (and expensive).

And yes, the facets could very well be a cause of my pain...but I don't have a doctor who is willing to do the testing yet.

Everyone so far is saying that my cervical, the 5/6, is urgent. It is compressing the spinal cord by a bunch, but I have very little pain there, massive in my lumbar (up to 30 mg of morphine every two hours). Is that common? And does that mean I have to walk around on eggshells? There is no hyperflexion, I believe is the word, where the vertebrae are tilted and in danger of sliding sideways, if I am explaining it correctly.

Does anyone post MRI images here, to get comparisons for those who like to look at such stuff?

Mark, I look forward to seeing information about that new one. Thanks again.

[Terry Allen Blackburn]

You are on a lot of morphine. It seems like you have become opiate tolerant which may mean a switch to another long acting opiate might be appropriate. That is unless your physician is comfortable where you are at. You could ask you doctor about methadone though it is tricky to dose. It needs to be started off slow and built up gradually or there is a risk of a toxic build-up with the potential for respiratory distress or failure. There is also the possibility of a fentanyl patch that is useful for patients who have become opiate tolerant. I would encourage you to see a good pain management specialist.

Good luck with all and hang in there. You have a lot to consider and work at.

Terry Newton

[Katie]

Terry, how I wish. I ended up in an ambulance four hours into my first twelve hour fentanyl patch with respiratory arrest, vomiting, etc. Almost the same with every other pain medication I have tried. I have extreme chemical sensitivity. I realize that I am either getting used to the dose, or the pain is getting worse.

My symptoms are changing, so I'm not sure what's what. I had just upped my dose a few weeks ago, and the pain specialist is fine with it, as long as it doesn't go much farther, I think. Thank heavens I found her, as two years ago, I could not get any pain relief, none, from my GP other than some tylenol 3. I was in absolute agony.

I did ask if there was a problem with the dose, and she said that she considered me a responsible patient and not abusing it, so no worries. If there are some side effects I should be looking out for, please, please let me know. I am extremely careful about mixing anything else, including cold medication, and always check with the pharmacist. A question....what difference would it make to change to another narcotic? The same issues would eventually show up, no? I really appreciate your feedback on this, and have questioned it myself, trying to stay sane and safe at the same time.

If I could just get a doctor who would treat me, this would not be an issue...