Those with ADR experience, could you give me any advice what to do next?

[Chiacat]

I'm just beginning the journey to find relief; 56 years old, and have had lumbar pain since early twenties, and neck pain since a "choke hold" injury when 26. I worked as a dental assistant for 25 years, and was able to maintain a high fitness level -- aerobic, weight training, stretching -- for thirty+ years which has kept me functional, but due to a repetitive motion hand problem had to give up all but aerobic and some stretching for the past three years. I’ve always had slight scoliosis in both lumbar and thoracic spine; a double wave with my head tilted to right side. For past 5 months I’ve had increasing pain right hip, groin, and anterior thigh -- worse in a.m. and at end of day -- or whenever pain meds run out. Some tingling around knee when I bend forward Increased leg pain when flex back or lean forward. Feel like I can't support my upper body.
I had recent MRI of both areas and digital motion x-ray of cervical area. In recent consultation w/ neurosurgeon about lumbar, he said "one disc is about half what it should be, and the rest are pretty much gone -- this looks like someone ten years older who has smoked for 40 years." I've never smoked, and am told I look about 10 years younger than I am. Not feeling that way anymore though since this began!
I’ve noticed that many people on the ADR forum have valued and maintained fitness in their lives. Do y’all think that looking fit and healthy has caused doctors to discount your problems and not take you as seriously as if you looked worse?
Dawn

[KBear]

Dawn- Welcome to the forum! Sorry you need to be here though. As far as doctors discounting that you have real problems, I could write a book on that problem. I was treated like a crazy person for the first 2+ years of my spine treatment. I was told that they just couldn't find anything wrong with me, they didn't know why I had pain, etc. I really felt like they thought I was just searching for pain pills. I was 25 when I was injured, so there was definitely judgement that I was 'too young' for spine problems. I've heard this from many spine patients and it's awful that it's still happening. Pain can not be seen by others, it's only felt by the person who has it, so it's hard for someone who does not have it to understand what it feels like to live in it 24/7. Good Luck, Kathy

[lolenona]

Chiacat,

I had neck, joint, and arm pain for many years and hd everything looked at EXCEPT for my spine. I was diagnosed with fibromyalgia, possible osteoarthiritis etc before discovering that it was my cervical discs causing most of the problems. It is very common for health professionals to overlook the fact that lumbar or cervical pain could be the cause of our problems until nerve damage symptoms develop.

[helmut]

The only people who know about the pain the spine can cause are those that experienced it themselves. When my journey started I was 34 and I looked like 25. Eventually after years of chiropractors etc. I went to one of the top surgeons at Cedars Sinai and he reduced me to tears by telling me that I shouldn't use crutches and that the MRI's show that there should be enough space for the nerve. He brought two young girls, students or interns with him and tried to act cool I suppose. For months crutches were the only way to get out of bed, I used them to suspend my body similar to a inversion table but me being right side up. I built up lots of upper body strength that way. I was at the point where my life was finished, it's impossible to run a business from bed. I dragged myself to that doctor after a phone conversation during which I told him that I was willing to just pay for a disectomy, I had no insurance as I am otherwise very healthy. He sounded open to that on the phone but as soon as he saw me and how young I looked he completely ignored everything I said. The last thing he told me was that he has patients with braintumors to look after and I should just go home, for some reason I think that the fact of me not having healthinsurance had something to do with him trying to just get me out of there. That was after I had been dealing with severe sciatica for years. The first attack disabled me for 8 months, off and on. That 10 minute visit cost me about 300$ and they kept my MRI's.
That was the worst experience I had with a doctor, eventually I was able to walk without crutches again but was never able to sit for more than may be 15 minutes. I focused on building my business, finding ways to fly business class so I could lay down. A business partner from HongKong told me about a hospital in Bangkok called Bumrungrad and next time I went over there I stopped by and had an MRI done within 2 hours of walking through the front door. The MRI showed a massive bulge and I mean MASSIVE. Permanent nerve damage was likely and my reflexes on my left foot were pretty much gone. Within a few more hours the surgeon had the MRI results on his computer and told me that he could remove the bulge if I would like to. I agreed to the surgery which took place the same night and by next morning I was painfree. I paid my bill of about 5000$ with my creditcard, which included a deluxe room with balcony and kitchen etc as well as all treatments.
Now I perfectly agree that everything should be done that's possible in order to avoid surgery, especially the first surgery on a disc but if after years of disabilty and a bulge that's poking through your nerves, when your life is reduced to constant fear of "can I walk tomorrow" then everything possible should be done.
My advice is get an MRI and have them put it on a DVD and then copy the disc and send out the copies to all the hospitals that you would consider. Be critical of what doctors tell you because they are human and factors like greed or simply marketing certain products, being influenced by insurance comanies or simply making a mistake, can influence their diagnosis.
Don't forget that there are good doctors all over the world and not only in the USA. And don't forget that it is pretty much impossible for a doctor to really get involved with a patients case emotionally, they would suffer nervous breakdowns, in that sense don't get emotional about how a doctor treats you, I wish I had known that one before on a more conscious level.

[KBear]

Very well said Helmut.

[Chiacat]

Helmut,

Wow, that was powerful, helpful advice; it's clear that you know this road well. I'm so happy to have your coaching! I'm also very pleased to know that you're doing so well at Stenum. Thanks for your contribution to me while you recuperate.

Here's hoping that you're able to make a "contribution" of another sort soon. (Sorry 'bout that -- I just couldn't resist the scatological reference after hearing a funny interview with author Mary Roach on "Wait wait, don't tell me" yesterday)

I appreciate the suggestion that I not take it personally when a doctor doesn't seem to get what's going on with me. I think some of that is the result of a professional specialty that hasn't been steeped in a preventive mindset here in the U.S.; they follow the "watchful waiting" treatment plan until there is a major problem, then just focus on "fixing" what has already gone wrong. Or, as I'm discovering, convincing us that our problems are just a "natural part of the aging process." I actually have read on a website called spine-health.com that although a younger person with DDD might have significant pain, if they can just ride it out until they are in their 60's when the discs have completely degenerated, their pain level should decrease. Not my idea of a good time! I have too much to do.

I spent almost 30 years in dentistry doing my damnedest to prevent the progression of disease, and it just makes sense to me to maintain folks at their highest level of functioning for as long as possible. It was not so long ago that losing one's teeth was considered "a natural part of the aging process," or that a woman was expected to give up a tooth for every child!

I do have my MRI scans on discs, although haven't had the x-ray series that Stenum wants. You've encouraged me to ask my GP to order those, disc them, and then send them to Stenum.

You didn't say whether you actually did have permanent nerve damage on your left leg from waiting so long before having your procedure in Bangkok; I sure hope not. I agree completely with your musings about the M6 type versus the ball and socket artificial discs -- it seems like simple mechanics to me.

I hope that all continues to be smooth sailing for you. Also thanks to Kathy and Lolenona for your support.

Dawn

[helmut]

Sounds like you are starting your journey. I think it feels good knowing that you are on your way.
My reflxes in my feet are somewhat numb still but I don't have serious problems with my feet not responding properly, the brain also compensates for some stuff I think. I notice numbness in my big toe at times but I still think that will come back to normal, nothing tragic at all.
Disc related problems are a fairly new medical field and many doctors for some reason are incapable of admitting that they simply don't know the answer, instead they try to act superior and place the patient in the position of a little child who they think they can shut up by telling them a load of BS.
I am checking into a hotel tomorrow and am enjoying my walks through the forrests of Bremen.
Yesterday I came back from a walk and I looked up at the room where they sliced my belly open just a couple days earlier and I saw the doctors and nurses waving at me in their surgical gowns, I couldn't remember them but it seemed like they remembered me.

Good luck to you

[tyler]

Hi Chiacat -

Amazing comments from you and everyone else on this post about what a trip this can be with docs!

As for me, I'd never had any serious medical issue before this Spring and had somewhat similar experiences in my first visits with docs. But I quickly changed by learning as much as I could about my own situation and possible approaches to it from resources here and elsewhere. And every subsequent meeting involved a lot more back-and-forth (including 'vetting' the best suggestions and concerns raised from others), and each consultation was both more focused and more productive - although the best docs are always so busy, especially when it's in-person.

Then there's the proverbial suggestion that if you consult 5 different docs you'll get 6 different opinions, which seems true - partly just the nature of experts but also because pain sources are often not simple or clearcut and solutions ulimately require an educated guess. That being said, long-term health is more important than just about anything, so I think it's critical to press aggressively to get to the best-possible solution.

Regarding timing, I also had arm weakness as well as pain - and for almost every doc I spoke to, weakness (especially in the arms) was a strong reason to minimize delay. For reasons that aren't clear, injuries to motor nerves impacting the arms seem to be much less reversible than sensory nerves or nerves in the leg. Apparently this is now reflected in some insurance company policies regarding discectomies that accept medical necessity claims after only 3-months of conservative treatments in the case of arm (versus at least six in the case of the legs).

So in my case I went through conservative treatments aggressively, but quickly moved through them since most docs I talked to questioned whether they would effectively cure the underlying condition - and they didn't - although it was worth a bit of time to try. During that same several months however, I had managed to consult with nine different surgeons, in many cases following up with them based on input from others - and by the end my choice was very clear. It took a lot of effort but I think every part of it was worth it.

It sounds like you're starting to make progress, and you've found a great place for support. If I can add any along the way or if you have any questions don't hesitate to ask!

In the meantime wishing you all the best!
Tyler

[Cindylou]

Dawn, welcome to SPS. I'm just now getting caught up on your post and other's responses. I think I missed it as I noticed you posted on my birthday, and so I never saw it...was busy with celebration, and all. Anyway, this has been a very interesting thread that you started. Helmut's post was very powerful. Many of us can relate to "not being seen or heard" by doctors. When I first had my bicycle accident 9 years ago, it took 5 trips to the ER in 10 + pain, before I finally got a neurologist to scan me from head to toe, and when he called me with the results that I was in so much pain because I had 2 compression fractures in my lumbar, I cried with validation. One of the ER doctors actually suggested to my husband that I must be having panic attacks, of all crazy things. Neither of us could believe it. I ultimately had 3 lumbar Prodiscs installed 6 years after my bicycle accident, about 3.5 years ago. Unfortunately, I have not been one of the lucky ones. I have had a couple of fusions since then, and am pretty close to having a neuro-stimulator installed, or a pain pump. I am first going to try a lumbar facet rhizotomy this Thursday, and pray to God it gives me relief. As I look back on my experiences, perhaps I should have been more realistic about what a 3 level ADR could ultimately provide me. Maybe my expectations were too high. Then I blame myself for what feels like a failure to a surgery that cost my husband a boat load of dough, out of pocket. You and I are about the same age. I hope you get the answers and direction you so deserve......and again, welcome. Cindylou

[bman]

Communication is the problem to the answer...Really it is?!
10cc sang that, but the medical profession echos the woes of poor communication daily!
I often catch problems that pass my many many MDs, DCs, RNs far too regularly, and it's not because of anything other than exceptional listening skills!
[ although I did graduate from LSUMC and I have honed the art of differential diagnoses)
Seriously though, the breakdown in social interactions you all witness in your local news broadcasts, reality-bashing shows and the like permeates communication in the day to day.
In medicine, the left hand FAR to often has NO IDEA there is even a right hand available.
Take pain mgt medicine as a prime example: each pain MD has a specialty, they wear it out on the PT, and if it doesn't work, as often ad not they drop you like a hot potato with a Scarlet Letter on you. Noisy of the ones I have dealt with don't refer out, so if facet blocks are their bread and butta but a diluadid pump is what you need, they might know that but you'll never know it, UNLESS you are informed.
That's what makes forums popular, because they impower!!!
I tell all my patients suffering with pain: Your pain is not my pain, but its real to you then by God it's real to me too!
..... Sorry for the rant, but I have watched communication decline in my nearly 20 years in healthcare in an opposite but linear direction as the boom in communication technology.... I bet a thread on communication breakdowns during our individual histories as spinal patients could fill a small server !
Bman