Conflicting diagnosis & now recommending DIAM

[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...