Newbies: Our back blog address and a topic too, Full Spectum Lights ease depression.

[Nihola and Bernard]

Hello everyone, Bernard and I are new here. Very helpful to hear from other people dealing with complicated back issues. We've felt pretty isolated, as few people can really understand the difficulties we face. We started a blog last year, which has help me alot, to be able to write about it and also to relay new information to our readers. I'll add a link to ispine on our blog. Here's the link to Bernard’s New Back.

B's back was injured in his late teens, and he just turned 41 this year. The past 4 years have been downhill, and for the past two he's been pretty much bed ridden. We've yet to find a specialist who wants to get to the bottom of it, although we're in the process of writing letters to some Vancouver specialists. We now have a pretty decent family physican, who's helped us with the paperwork for getting on the disability assistance we have here in canada and for applying for other programs, as well as meds. Our life has changed completely. Instead of living independently and running a company, we now own nothing and live with my parents. We've had terrible experiences with specialists, with the majority of them here in this country having outdated information that they want to hold onto as long as possible. He hasn't been taken seriously by any of them, and if one more rich boy specialist flipantly minimizes the problems, their going to have trouble with one furious girl! Most of the problems are at one level, as far as we can tell, and increase astronomically with movement. Osteoporosis is also a factor. Sitting is impossible, walking for only a few moments, and the consequences of movement progress over multiple hours. Anyway, were still hopeful, although very scared. I have optimism that this year we'll find an intelligent caring specialist who wants to figure out what's going on. We can't proceed until a fuller diagnosis is made. MRI, CT and x-ray have been done, but don't give the whole picture. Most doctors just don't want to touch it.

One thing we tried this winter was a Full Spectrum Light. Depression is always a possibility with chronic severe pain and such an uncertain future, so I thought we should to try to head off an increase in winter blues from lack of sunlight, which can aggravate the situation. Research online helped, but I ended up finding one at the local pharmacy. 10,000lux is the usual dose, using a weaker lamp is not condusive because of how the intensity of light drops off. B puts it on every day when he wakes up and uses it for a few hours in bed. Even 15 mins can benefit some people. He feels like it helps, and the light, once you get used to it, feels very cheerful, like the feeling of lying on a beach on a really sunny day. Lack of sunlight, a very common thing throughout North America and Europe during the winter months, can have a profound effect on our mental health, increasing feelings of depression. Many people with back problems have reduced activity which often probably leads to even less time spent with the sunshine reaching our eyes. So, something to check out. Wikipedia has good articles on SAD and Full Spectrum Lighting. We've written a post on our blog as well. Hope that's helpful for some of you.

[dshobbies]

N&B,

I did give your blog a quick see and am pretty dismayed at the treatment you've received at the hands of specialists. I am no where close to others on this forum as far as medical knowledge but I know enough to know you haven't seen the right doctors.

First, L4/5 is has almost no disc height left and the end plates don't look right (at least to my eyes - see above) I can't say where your pain is coming from but if the only surgeries you've had are discectomies, there are newer and better remedies out there but you have to know where to look and currently, you have to be willing and able to spend your own money. It's difficult to get coverage for doctors out of the country and if you can maneuver through the system, it does take time but perhaps it ultimately would be worth looking into.

There are excellent doctors both on the east and west coasts of the US and Germany. I call them heavy hitters and to date, there aren't many of them.
If you're paying out of pocket, the cost is Germany is about half the US and in my opinion, Dr. Bertagnoli and Dr. Zeegers are the best in the world. Also in Germany is an unbelievable diagnostian, Dr. Baumbach.

Two remedies which you should look into are ADRs and fusion. Living with this much pain should not be acceptable until all solutions are exhausted. Mark, GPN Artificial Disc Replacement ADR is a patient advocate who can facilitate internet consultations with most of the heavy hitters if you decide you want to explore your various options without leaving home.

I'm sorry for your suffering. I lived too many years with the same pain and disability. I had a 3 level lumbar ADR in 2005 and though not 100%, I do have my life back. I think perhaps you can too!!!!!

Good luck, Dale

[Nihola and Bernard]

Thanks Dale, its nice to be able to talk about it a bit. One clarification - Bernard hasn't had any surgeries yet, none of the specialists considered his case severe, and the only suggestion has been physiotherapy, something that worked well - 10 years ago, but only aggravates things now.

[Maria]

N&B,
Welcome. Sorry for the reason to be here tho it's why the rest of us are here as well.

I injured my back when I was 28 working in Neurosurgery(RN) and had episodic disabling pain that would make me bedridden for at least 2-4 weeks at at time. Findings per CT scan back then were sketchy however it appeared to be probs from L3-L5S1.

Nothing was offered really in terms of treatment back then other than PT until in '89 my back went out once again and I told my GP I could'nt live like this. So a referral to a new Neurosurgeon was made and surgery was performed at L5S1 (discectomy) and it was successful. This happened 7 years post my original injury.

However the dominoe effect likely had taken place and L4 became problematic more than a year later and so I had a percutaneous discectomy done at this level. Unfortunately the surgery had a much much worse effect re pain and disability than previous to surgery. Pain went from episodic to chronic and much more intense re burning down thru my buttocks and lower extremities at all times.

I forgot to mention that sitting had long been problematic for me before 1st surgery and definately after 2nd one until pretty recently with an autofusion of L5S1 (no further surgery but finally after many years this level apparently fused on it's own. I've been offered more surgeries but have not felt the need of late to have another one "yet". We shall see.

I could go on and on with my story tho it's got so much to it that I really get tired just writing it as I sit (or even thinking back on it)...

Suffice to say that I'm very sorry to read about the lack of progress on your spinal diagnosis and treatment and wondering if you are looking into requesting opinions here in the states and/or other countries? Just opinions if not treatment...

I was looking at your medications and think that perhaps in the way of pain managment you are not being well managed on the medications you're on re pain as I was bedridden for nearly a year when I finally stopped working back in 2000 (yes my life was drastically changed by the back journey as well like many others) and amazingly being prescribed an opioid medication which I was previously opposed to did allow for me to be much more functional or at least drive myself to doctor's appts. and wait vs. have my husband cart me around lying down in the back of his SUV.

Re not having surgery yet this sounds like a positive point to start from (virgin spine vs. multi surgerized spine) so even tho life is difficult hopefully if and when the time arrives for a surgery (whichever one would be best for you) the fresh spine aspect will be on your side.

Good luck with the progress of your case.

[kelly from ontario]

have somewhat same difficulties sitting and standing still.also same symptoms.am a spiney virgin,no surgeries.take morphine,pregabalin 350 mg/day and a fentanyl patch 50 mcg.amdoing research on my best solutions.was also in nursing rpn.just hoped u would feel better that someone in same boat.kelly

[Minnesota]

Hi, You may consider sending you MRI images and x-rays to Stenum Hospital in Germany to see what they recommend. If Germany is out of the question research Wockhardt Hospital in India. If you search on youtube or metacafe for Wockhardt hospital you will find many testimonies. Metacafe website has more than you tube. I need multi level in the lumbar and cervical and I am having Global Patient network consult with them. I am unable to pay for a surgery at Stenum and Wockhard is generally half the cost of them. Many have been there from the USA and Canada, it appears to be more common than I thought.