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annapurna 06-07-2007 03:04 PM

I’ve been meaning to write a long post talking about recent efforts we’ve made to resolve Laura’s outstanding back problems. First, for those who don’t know there isn’t a signature explain what those problems are because the signature would be longer than most of my posts. Laura has a Charite at L5-S1 (Zeegers) and a Prodisc at C5-6 (Bertagnoli). She delayed in getting the Charite and likely had facet damage prior to surgery but that damage has not radiographically advanced in three years. She now has LBP from the SI joints, L5-S1 facets (slight contributor) and L4-5 facets (recently proven) and either cervical symptoms and/or shoulder trouble as well as a host of other joint problems.

For those with insurance woes, our company sponsored HMO makes it such that we either get things done in our immediate (100 mile radius or so) area or pay in cash. As such we go overseas for most things as we feel we might as well get the best we can find if we’re paying in cash.

In January of this year we went to the Alpha Klinik for knee surgery for Laura and took the opportunity to have a Dr. Baumbach, a neurologist practicing across the street from the AK, look at Laura. For 500 Euros he did a complete head-to-toe evaluation and suggested that she stop pursuing worries about her Charite and the L5-S1 facets as they didn’t seem to be the source of her main pain. We took that information and made a hurried appointment with Dr. Bertagnoli, who agreed that a more complete set of diagnostic injections were in order. He proposed to do a full set of facet blocks on her whole L-spine on one day and, if that hadn’t shut off her pain sources, come back in a couple of days later and check every lumbar disk remaining with a discogram.

We returned at the beginning of May and started with this plan. Dr. Fenk-Mayer did the injections and modified the plan slightly with her spin on the approach. The facet injections were not done on a single day, instead L5-S1 as the likely culprit was checked one day followed by discograms at the likely levels followed by L4-5 facet injections, spread over three days. We also went into Munich and had Dr. Baumbach recheck his earlier findings and do additional work to try to determine how much of Laura’s shoulder pain was due to rotator cuff laxity and how much was due to cervical spine issues. While in Munich, we took the time to have a follow-up appointment for her knee surgery and asked Dr. Salgo, an internal medicine doctor working in the AK knee unit, to perform a blood draw and submit it for extensive lab testing. A trip to a local imaging center for a whole spine CT at Baumbach’s recommendation rounded out the trip to Munich.

With those four days of rather intensive poking and prodding, we now know that Laura’s main lumbar spine pain source seems to be her L4-5 facets, she may show a disc bulge at L4-5 as well as it is barely visible on a subsequent MRI and Baumbach feels that she is suffering from central cord compression, she seems to have a mycoplasma infection lingering in her which might be the source of her numerous joint complaints, she shows no DDD at L4-5, and she has peripheral neuropathy in her legs. She also had the L4-5 facets rhizo’ed by a doctor recommended by Fenk-Mayer on our last full day in the area.

If I had anything to say about what we learned it would be:
1) My wife’s not likely to leave this world with OEM parts, she’s likely to become an aftermarket queen. She already asked if she could apply for dual Germany citizenship if she gets a few more parts implanted over there.
2) The old joke about money talks means more over in the German system. Our ability to pay for the tests and follow through when someone found something necessitating more tests permitted all of the information we gained. I’ve got no advice for those who lack the money. We were blessed with good jobs but I did want to make the point that the German system seems to respond to willingness to pay faster than the US system
3) If you have an impossible to figure out spinal problem, Baumbach’s neurological evaluation is worth every Euro but plan on spending 3 to four hours with him to let him do the job right.
4) The imaging center in Munich was able to image around the metal artifacts from the two ADRs and produce excellent CT images.
5) The blood testing was great and very extensive but we had to spend time on LabTest Online to figure out what each test was as we converted from medical Latin through German to English
6) Having decided that Laura’s facets are indeed a problem, we renewed our interest in the facet joint replacements. The design intended to work with an existing ADR is getting ready for human trials. Laura might end up with triple citizenship as it looks like the trials may be in South America.


Lastly, ABSOUTELY NONE of this would have occurred has we not decided to TAKE OWNERSHIP OVER OUR OWN MEDICAL CARE. Most of the time the doctor would inform Laura of the result of a given test but wouldn’t add anything until one of us asked point blank “What do we do next?”

Harrison 06-07-2007 05:07 PM

Wow, Jim & Laura...thanks for sharing so many insights! I'll chime back in soon, thanks for sharing.

http://adrsupport.org/groupee_common...icon_smile.gif

Harrison 06-13-2007 11:34 AM

1 Attachment(s)
"...she seems to have a mycoplasma infection lingering in her which might be the source of her numerous joint complaints, she shows no DDD at L4-5, and she has peripheral neuropathy in her legs..."


Jim & Laura,

It’s amazing that you took the time and money to go overseas to obtain a thorough assessment! Is it possible that you could have obtained similar diagnostics here?
http://adrsupport.org/groupee_common...n_confused.gif

It’s also interesting that the doc may have happened upon a mycoplasmic infection – that may or may not be related to your condition. I attached an article from Dr. Nicolson, who has done a considerable amount of research in this area. Though dated, you can find a lot of new writings from him; this just happens to be a nice overview document.

Hope this helps.


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