Cervical & SI Joint Issues

[MeggieLynn]

Hello Everyone,

I've been reading this forum for a few months, have never posted, but I guess it's time. I have multiple pain issues & it's taken me a while to try to sort through it all.

A few years ago I was diagnosed with "mild" cervical DDD-3 levels affected - however my symptoms have been anything but mild. I have severe spasming of upper and lower traps w/pain & weakness into the shoulders and arms R>L, also occasional "zinger" nerve-type pain into the 4th & 5th fingers R hand and tip of baby finger on the left. It all started after I "injured my back" shoveling.

I have had fibromyalgia for > than a decade but never considered myself a chronic pain patient. Mostly had major sleep issues with some fatigue but the fibro pain was 80% kept at bay with exercise, good nutrition, and various supplements.
I have been through multiple pain clinics, tried multiple meds, and various treatment modalities and nothing has been effective in addressing the above symptoms. The pain clinic MDs diagnosed it as chronic myofascial pain and neurogenic thoracic outlet syndrome. I did not get an MRI until 15months into all this and Cervical DDD can mimic all the above syndromes so its a little complicated.

Found an ADR surgeon in my area who agrees that the all this could be coming from my discs and the next step would be a discogram, but need to put this on hold as I injured my R SI Joint last February. Got botox into my neck and upper back at that time & became very ill and weak. Could barely get out of the tub one morning and I twisted my pelvis somehow.
Arthrograms were positive x 2, not a candidate for for RF neuotomy, & was given referrals to see some surgeons for possible fusion of that joint.

Not that I want to rush into that but I'm pretty disabled by it - on crutches and using a wheel chair. Will be seeing the surgeon that "CindyLou" used for her SI Joint fusion - don't know if she's had any good long term results though.
Thank you for taking the time to read this long Intro and I welcome any questions, comments, or suggestions you may have.

Best Regards, MeggieLynn

[annapurna]

Few thoughts: Do you know why you weren't a candidate for RF neurotomy, often called rhizotomy or rhizo on this site? It's a good way to buy time to come up with a permanent fix. If your doc understood that you didn't regard the procedure as a permanent solution and would pursue somethign further as soon as you could recover enough to get all of yoru diagnostic work done, they might be willing try something like that.

Laura was diagnosed with fibromyalgia early into her recovery from lumbar ADR when her SI joint and L45/L5S1 facets were still very painful. It's vanished through the years when those pain sources became controllable without the need for even weekly pain meds. That makes me really believe your implication that your fibromyalgia might be less severe than you thought and some of your problem might be chronic pain from other sources.

Have you tried prolotherapy for the SI joint? I'd bet more on rhizo to buy you a little time but prolotherapy might work in much the same fashion. I'd really spend the time discussing your reaction to the botox as that might mean that prolotherapy isn't a good idea for you.

I don't really have that much to offer unfortunately. You're probably right that the collection of problems you already have precludes one more insult to your system from a discogram. You could see about getting the discogram and just planning on a needing a week or so of care and bedrest. I don't know if you have someone who could help you to that degree but you seem to be in the position of having symptoms from problem A preventing you from solving problem B which prevents you from solving problem C....

[MeggieLynn]

Hi Jim,
In order for insurance to pay for the rhizotomy, you have to pass 2 Lateral Branch Block tests. Somehow I failed the first one - I got really good relief the first hour, but that relief quickly fell off in the second hour. I guess you need at least 2 hours of good solid relief. So, yes, that was the initial intention in trying to buy me some time.
I've considered prolotherapy, but have been hesitant, because of the fibromyalgia and how I reacted to the botox. Triggerpoint injections would cause somewhat of the same response with the same severe spasming and flaring of symptoms. I thought the botox would offset that - but no such luck. I'm thinking maybe the botox had some affect to the top layer of muscles but then perhaps the underlying layers of muscles overcompensated with even more tightening. In any case, I'd like to see the results of my pelvic/SI Joint CT to see if I really did "yank" that joint out of alignment before thinking about prolo. I will be seeing Dr John Stark next week - the SI Joint surgeon to review it.
It was the neck sugeon who suggested I deal with the SI Joint first.

MeggieLynn This is sort of how I look when I do try to walk - only a lot slower and kind of dragging the right leg.

[annapurna]

I think we're both thinking the same thing about prolotherapy: might help, might really mess up your other symptoms.

Have you thought about going outside of the country for the rhizo? I know everyone thinks of doing that for surgery but Laura had a two level rhizo done by a doc in Regensburg for about $3-5k US if I remember right. It's a stiff price but it might allow you time to deal with each problem in turn if you could get one under control short-term. I only suggest that because it might let you get off the insurance merry-go-round.

[MeggieLynn]

I'm not sure what to do about anything. My head has been spinning the last couple of months. A rhizo for the SI Joint is not so straight forward as it has a very complex innervation pattern. In 60% of the population it is primarily innervated ventrally(backside) & the other 40% its anterior or from the front. Generally RF ablations are done only from the ventral side covering lateral branches of L5,S1,S2,&S3 and there are about 8-9 lateral branches of these nerves that they have to "burn". So it probably would be alot more expensive.

For the anterior side denervation they would have to start farther up like at L2 and proceed down. Perhaps I'm in that population where I am more innervated anteriorly & maybe that is why I failed the block. Thanks for your suggestion though.

MeggieLynn

[Jstuckey]

Just to clarify for your own understanding, ventral=front/anterior (abdomen side), dorsal = back/posterior.

[MeggieLynn]

Thanks for the clarification - I always seem the get the front and backsides mixed up especially when it comes to the spine.

[bgeary]

MeggieLynn,

You may want to look at something other than current spine issues causing your pain and fibro. The fact that you had fibro and then had the cervical & SI issues could be systemic from something bigger like a bacterial or chronic infection that eventaully caused the other issues. Have you been tested for any kinds of infections?

Bill

[MeggieLynn]

Hi Bill,
I've been tested for Lyme disease twice and its come back negative twice. I know some researchers are focusing on a possible bacterial/viral connections to fibro but I really don't think that is the case with me. Other than having the fibro, I've really been been very healthy and rarely get sick with infections. I've gone through an entire decade and have only gotten about 3-4 colds whereas most people get that many in a year.

I believe the fibro is because of my poor sleep. Two sleep studies have shown that I have little or no REM sleep and spend little time in the deeper stages of sleep. Six years after the poor sleep started the muscle aches & poor tolerance to repetitive-type exercises started and then the fibro dx. The first year was difficult w/muscle pain but it then improved w/Tai Chi, a light walking & biking program. I never had chronic pain in my neck, upper back, and shoulders until after I "injured" my back.

As far as the cervical issues, I think I know how the DDD started. I was rear-ended 3 times in the last 15 years, in the same time frame I had a major fall and landed mostly on my head w/my arms just barely breaking the fall, I got caught up in the home improvement craze and did far too many projects that were not good for my strength and fitness level and w/maybe not the best body mechanics at times. I think the SI Joint injury was just an unfortunate occurrence.

MeggieLynn

[Harrison]

Bill, thanks for posting. MeggieLynn, when you have some time, pls see this topic on Lyme Disease testing -- which is controversial for myriad reasons:

http://www.adrsupport.org/forums/f44...nic-pain-8368/

Was your Lyme Disease test assay regionalized for your geographic part of the country? Were you tested for co-infections (viruses, other bacteria, protozoa)? An accurate Lyme Disease diagnosis is more than a blood test -- it relies on lab results, including a blood panel, and a clinical diagnosis from a trained doctor.

I think most of us would all agree that DDD is multifactorial, but in some cases it's more weighted to one factor than another:

- poor diet
- loading the spine by sitting all day
- trauma
- comorbidities (weight, smoking, etc.)
- bacterial infection (localized or systemic)

Also see this topic on how microbial infection has caused acute and chronic disc spinal disease.