Introduction and Advice
 

Hello my name is Stephanie and I live on Vancouver Island in British Columbia.

I have Internal Disc Disruption (IDD) and I am desperate to find someone else with this diagnosis who has experienced success with ADR. Unfortunately IDD does not show up on an MRI as the issue is actually inside the disc. The diagnosis is given after a process of elimination.

I am severely disabled. I cannot sit, walk, or drive. I am largely housebound. So I am pretty desperate at this point and seriously considering ADR with Dr. Bertagnoli. I just have to get an MRI and send it to him in order to have him assess. I am terrified to hear him say because he can't see it on an MRI that he won't operate.

Anyways I am happy to be on this site and look forward to learning more about ADR.

Kind Regards,
Steph aka Daisy

Welcome to the forum. Although I don't have your condition, my symptoms were weighted heavily along with the MRI. Good luck finding a path that will fit for you.

Welcome, and sorry to hear about your pain. Although MRI's are the first form of submission, most dr's want x ray's with range of motion. I went to Dr Clavel, and only after he saw x-rays and CT scans showing range of motion would he give a diagnosis. I even had to do one of the views over because it didn't show exactly what he was looking for. It was kind of a pain, but in the long run, definitely worth it.

Hi Daisy,

Sorry to hear about your condition. I noticed in your sig that you did Prolotherapy, do you mind me asking the doctors name?
Also when you get your MRI you might want to solicit more doctors. I did 6, 3 overseas and 3 in the US. I received 5 responses and it was unanimous that L3-S1 needed surgery. It was a relief that I got that consensus. The next part was to narrow down that list and select the surgeon.
Good luck

What about a discogram?

Multiple Opinions
 

I agree with the "Stone". get multiple opinions because my experience with the Dr. Bertagnoli US contact was not pleasant, while Dr. Zeegers was probably one of the best doctors I had the pleasure of directly communicating with. I am not even sure Dr. B reviewed my files. Tim, his US handler, made so many mistakes, indicated I was a candidate for a Cervical ADR (Oh by the way, I have a single Level issue at L4/5. haha). This does not say anything about Dr. B's ability, just the process for US patients.

Since your case is unique a few opinions may be necessary. Just make sure you are not just searching for a doctor to say Yes to ADR. It needs to be the correct solution to your diagnosis.

Jim

Hello and welcome.

If I could wave my magic wand, I would find a pain mgt doc or interventional radiologist for you -- to extract a small sample from the disc nucleus and use PCR and culturing to screen for microbial infection. Your diagnosis is unusual, but it could suggest a pathology that involves lesion or infection.

Pls see this multipage topic on this subject:

http://www.adrsupport.org/forums/showthread.php?t=9218

And note this credible study on how many patients benefited from antibiotics:

http://www.adrsupport.org/forums/sho...tibiotic+study


But could it be simply an annular tear? Maybe. See:

http://www.chirogeek.com/IDD%20Page/IDD.html

If it’s an annular tear, fixes such as fibrin have been used to “cement” and seal the annular fissure.

Daisy,
I'm the guy you talked to in Duncan......
I have a business colleague in Victoria that had horrific lumbar spine pain and he was on pretty much every heavy opiate going. He finally after a long, long list of frustrating tests etc had a biopsy to remove tissue from the affected/infected area and they built a signature genetic culture and now for 6 weeks/3X day he injects the 'vaccine' back in to an IV that is fed in right near his heart. He had less than a week last Saturday when I talked to him and he said it was the first time he's slept over 4 hours and was drastically reduced in lower lumbar pain.

I think that biofilm issues and arthritis issues are really very important to look into. Try the Tart Cherry juice too......

Call me again and I'll dig up more information from John....

Hi Daisy,

So sorry to hear about the pain you are in. I am currently in Calgary recovering from surgery but will be heading to my second home on Vancouver Island the end of May. I'd be happy to talk to you or meet re ADR surgery if you are interested PM me some time.

Thank you.

Very interesting to know as I was surprised that Dr. Bertagnoli asked for x-rays as I didn't realize they could provide information that an MRI couldn't.

I went to a family physician and pain specialist, Dr. Manchanda in Surrey, British Columbia. A couple of years later I then went to a naturopath, Dr. Deidre O'Neill for the PRP.

Good point about the consensus. I was just going to get an assessment from one doctor but it would be very validating to have more than one opinion. Thank you for confirming this for me.

Yes, I have considered getting a discogram although the procedure remains controversial. In Canada it is now only done by private clinics and is very $. I am still considering it as an option though. Have you had one?

I have heard similar things about Tim which is really unfortunate. Dr. B. must have heard this feedback by now. Not sure why he doesn't do something about it. Anyways I am sorry to hear how your situation was dealt with.

You are right about not searching for a doctor to say yes to ADR. I think that is what I was hoping for and you are right I need the correct solution. I can't throw my money and health away on something that isn't the right answer.

Thank you Jim.

Thank you for your comments Harrison. I have long thought that perhaps I have an infection of some sort as I have suffered from systemic candida throughout my body for years. I have always wondered if it is what is affecting my spine but after googling etc. I don't know where to try and determine if this is so. I would love to be able to find someone to do an extraction from the nucleus. I will read the thread you shared and hopefully learn some more about this process and where I could get this done. I am in British Columbia, Canada.

I have read the studies about antibiotics but from my previous research didn't think it would pertain to me but I will revisit the topic again.

As for annual tears, yes that is essentially what IDD is and I looked into doing the fibrin sealant last year when they were doing the initial trials. The trials were already closed but one of the doctors agreed to treat me. I decided to wait until the trials were over to see how the fibrin sealant performed and overall the results were very poor so I abandoned that idea.

Thanks again for all of this valuable information and I am going to go and read those threads about infection.

Thanks so much for this info. I would be interested to find out how he finally was able to get the biopsy done and by whom. How long had he been living with pain?

Thank you for the reminder regarding the Tart Cherry Juice...I will look into that today.

Thanks again for your support. I truly appreciate it.

If you're thinking about looking into biofilms and systemic infections, I'd check into Dr. Greg Blaney at the Stillpoint Project in Vancouver. He's been working in those areas for over a decade and is more or less in your backyard. He also does phone consults so you can discuss your situation with him by phone before deciding if it's worth your while to go see him.

Hi,

I would love to talk to you when you are back on Vancouver Island. I hope your surgery went well and wish you a speedy recovery.

Thanks,
Stephanie

Thank you so much for this info. I will check him out! Thank you! Thank you!

UPDATE - It says his practice is closed and to check back as it may open some time in the New Year :(

Rich, AKA Harrison, has many, many options for those interested in pursuing the biofilms and similar. I thought of Blaney because he was so close to you but there are others. Gordon Medical, for instance, is in Santa Rosa, CA, which, for you, would be a two short-plane-flight hop on Alaska (we happen to live just south of you, in Washington, so we're familiar with the flights). Gordon Medical has done phone consults in the past, don't know if they do them now, but only after you go see them once in person.