I am Wolf Schweitzer, born 1967, and since May 2007, my right middle hand started to exhibit a localized region of swelling that was painful. In September 2007, I started to get first medical diagnostics and surgery.
As it turned out, we were dealing with recurring, increasing, locally spreading and locally metastasizing tumorous tissue proliferations also with a cyst-like bone defect. Histologically, these nodules and sheets contained well formed, at times densely packed capillaries / blood vessels, synovial tissue and myofibroblasts without clear signs of malignancy but without a delineated capsule. No infectious parameters were identified in locally collected fluid, blood tests or in histology of biopsies.
The damage started between metacarpals II and III and ended up with metastasized spread between metacarpals II and V. Main complaint was recurring tissue growth, pain and subsequent insomnia. Pain levels started to become profusely excessive in October 2007. I slept little if any, around 2-3 hours a night, probably between beginning of October 2007 and April 15th 2008, with little exception. Before too long, I was completely stressed out.
New occurrences of tissue growths were noted in January 2008 and in March 2008; two lumbrical muscles were removed that contained scattered white nodules (looking like Amanita muscaria). The quality of that little bit of sleep got considerably worse. My whole life fell apart. I could not think. I could not focus. I woke up in the middle of the night, of almost every night, all systems activated by pain. I was completely at the mercy of this pain and what grew there in my hand, my private life and job life disintegrating week by week.
Specialized anesthetic drug regimen were attempted to contain the pain (up to 400 mg Tramal, up to 2400 mg Neurontin, up to 6 x 500 mg Mefenacid, up to 6 x 500 mg Panadol, Transtec skin patches, Morphine injections, to name some of them) but only managed to cause temporary collateral liver enzyme elevation. I dropped out unconscious after enough drugs were delivered – so 200 mg Tramal tablets would yield 1/2 an hour of peace (but waking up dizzy, with a dry mouth and full pain after that was not funny, not mentioning withdrawal symptoms after I stopped it), a type of peace also delivered by subcutaneous Morphine injections which I had as stationary patient. Some drugs that were tried made the pain even worse.
As a complication and in addition to tumorous growths, tissue was – after the amputation, a lot later – found to also have contained extensive histiocytic reactions to surgical suture material (all Ethicon produced) and extensively thrombosed veins and capillaries. So, massively excessive pain was, in hindsight, caused by recurring tumorous nodules containing vessel proliferations (known to be extremely painful) added by thrombosis and inflammation. At the time, no one thought of wide spread thrombosis being a possible cause, and no tests or treatments were performed for that. Also, no one considered Ethicon sutures as contributing to serious pain except one pathologist, whose remarks later were found to supplement the final path report.
What type of tumorous soft tissue process this was did not become entirely clear, particularly with respect to the question why it spread with metastasizing nodules or tissue plates. Infectious causes were not identified despite extensive testing, which, technically, still does not rule out some atypical mycobacterial infections despite one laboratory having done specific cultures for this question. There was no indication for infectious, autoimmune, rheumatic or metabolic disturbance; a clearly elevated CA 72-4 tumor marker later normalized (after the amputation).
The then-type of life was not a life that I could lead. And not “not”, but “not at all”.
After a total of six surgeries (Oct 07, Nov 07, Dec 07, Jan 07, Mar 08 #1, Mar 08 #2), some rather dramatic complications to my health status occurred, that involved unapproved and unsound prescribed drug dosages, as well as further unauthorized and uninformed technically deficient medical interventions, both medical and surgical. Later, an insurance-independent specialist review board, expert reviews as well as insurance found these complications to be entirely accidental, in the aftermath of a non-standard very high dosage drug regimen used during a gastroscopy on an outpatient basis. Surgical intervention attempts were performed, but not only functionally deficient but had caused further complications (venous thrombi throughout the hand, severe suture reactions, lack of sufficient postsurgical anticoagulation medication) that were neither recognized, assumed, tested, leave alone treated; these however appeared to make the already severe pain ever so massively worse. That further increased already high stress levels and that, at that time, was definitely critical.
After all offered medical options to achieve fast and solid pain relief and surgical attempts to contain the spread of these tissue nodules had failed, and as additional causes of severe pain (severe suture inflammations, widespread vessel thromboses in the hand) were neither sought nor considered, not treated or avoided, I was exhausted, fully in pain, unable to sleep, unable to be awake, unable to work, unable to read a book, unable to watch a movie, and after half a year of serious insomnia at the edge of considering assisted suicide which people close to me knew.
So we sought help by an internationally renowned hand surgeon in a global reference hospital that had been recommended to me. Previous tests were reviewed, and repeated comprehensively. Even though the type of growth was never characterized to explain what it did, there is a rather clear risk factor in my biography: I had used both hands – but that right hand excessively – to manipulate patients’ joints under an X-ray / C-arm machine when working in a small Swiss alpine hospital mainly dealing with sports injuries some 12-13 years ago. One surgeon who was part of the extensive review and re-testing process said this type of nodular metastasizing mixed tissue tumor was typical for situations that half a year or so later would end up yielding synovial sarcoma.
Surgical excision with a large safety margin was found to be the only treatment option. This was taken extremely seriously; as I had judged myself as (and was also judged as) to not be entirely legally competent to make my own decisions then, mainly due to more than severe chronic pain (painful tumor growths, extensive vessel thrombosis, severe inflammatory suture reactions) but also due to the overall stress situation, a close family member and the surgeon discussed technical options together after exhaustive medical re-testing and review going over several days, and they ultimately decided over my treatment.
A right below elbow amputation was performed on April 15th 2008. Initially and due to being overwhelmed by both the previous treatments and hospitalizations and the amputation, I suffered from post traumatic stress disorder and was not able to focus well, but I got treatment immediately and subsequently recovered from that.
Current society is defined through markedly different perceptions of disability including upper extremity prosthetics – and that constitutes a problem:
- Reality of amputees has it that prostheses are technically insufficient not in a minor but in a nightmare type of way, they are not unaffordable in an inconvenient but in a massive type of way. For a rechargeable Otto Bock battery that contains five cheap Varta cells, some 700 USD are charged. For an unprecisely milled Otto Bock bolt that cannot possibly cost more than 2 bucks, 80 USD are charged. A number of commercially available terminal devices are built to fail relatively fast. Choice of design and materials of factory issue setups often are sub standard: harnesses smell from sweat within days, cables tear, hand mechanisms break, hooks give up. Of course I don’t watch that passively – my setup is already heavily tweaked and modified. – – In early 2009 I would wear Ossur Iceross Upper X silicone liners, an Ossur Icelock pin-lock system, a harness with modified odor-free coating (Michelin Latex mountain bike tubes, biopharmaceutical grade Silicone tubing), a stable cable mounted for long term usage (steel rather than plastic), a specialized wrist we built ourselves (low height, central opening to accommodate for pin lock, stable quick release) and terminal devices aimed at high loads (Becker hands, V2P Prehensor, Regal Prosthesis gloves, and other stuff). – – By mid 2011, I am wearing a customized shoulder brace to relieve my brachial plexus (the three months research effort was paid for by insurance), a patent-pending new high-tech cable mount that minimizes friction and that withstands ‘extreme’ loads for several months and that also allows me to swap components myself (a must-have for the technically inclined), a new quick-lock wrist unit built by mechanics that specialize in such locks, a prosthetic socket that is extremely robust and sturdy, and still, the same robust and reliable terminal devices (Becker hands, Hosmer hooks, V2P Prehensor). I also wear a cosmetic arm if the body powered arm is too hot or clumsy, painful to wear due to shoulder or stump problems. Or no prosthetic arm at all. – – By 2012, I switched to Ohio Willowwood Alpha gel liners. Components now are built better than before. I got Centri to make me custom colored PVC gloves for the Becker hand. — As always, I am interested in collaborating towards development of new material.
- Reality of non-disabled people has it that they are continuously presented with bionics hype, with advertising of some technology that is way past reality and surely not obtainable. Academic research is interesting, but for the most part has failed to deliver any improvements to upper arm prosthetics in the last 50 years. By and large people tend to be a bit shocked when I show them real stuff, when I tell them what really is going on. Reality of academic prosthetic research has it that they never end up actually helping amputees.
- Reality of prosthetics manufacturers has it that market driven production does not work well in our instance. They believe that they have to sell large quantities of cheap produce at high prices to amputees. The result is a staggering rejection rate of around 50-70% of upper arm prostheses. This industry’s failure rate is mind boggling. The answer to this is a change of model: first steps in the right direction are setups such as Open Prosthetics or state- and insurance-sponsored and supervised research. Further steps include separating design from manufacturing, separating sales from product testing.
- Chronic strain and overuse are real and tangible problems that govern my decision what to wear today, they are the red thread through my days. No prosthetic component manufacturer that I know of has ever considered that. I have these problems, everybody has them. After 2 years these problems become cumbersome and at 5-10 years they become the single decisive factor. Did you just read that? Did you understand what I wrote there? Forget the rest. That is all you would want to focus on. All useful and sustainable prosthetic design will ultimately have to gear towards being extremely light, robust, gentle and sturdy at the same time. After a lot of cooperation with technical specialists through a range of industries, I did collect the necessary assembly for my own body powered arms.
- Social issues are a huge subject. However and due to their delicate nature, these are only a marginal issue here, which is why this blog is called “technical” below elbow amputee issues. Social issues are important, however, and you can expect that I go about them with the same diligence and finely grained attention span as I would deal with technical questions.
My views and experiences in relation to problem identification, trouble shooting, part replacement, performance metrics (such as ADL / activities of daily living), health issues and others are published in this blog.
Some posts and experiences result from questions or constructive exchange with other people (e.g. Mark Lesek, the Becker hand and the Carnes arm; Becky Pilditch and prosthetic design [1,2]; Tanya Pleser and re-design of a household iron; Roman Meili, Stephan Mueller, Peter Schneider and design and construction of our new wrist unit).
You can send me an e-mail to wuff at swisswuff.ch.