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 would drop out unconscious once 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. Massively excessive pain was, in hindsight, caused by recurring tumorous nodules containing vessel proliferations (known to be extremely painful) added by profuse thrombosis and extensive, post-surgery related inflammation. At the time, no one at the University "specialist" center thought of wide spread thrombosis being a possible cause, no coagulation issues were prevented, 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 that no one at the University "specialist" center really read at the time.
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. Both local University hand and orthopedic "specialist" centers were consulted but the doctors did not express any useful extent of interest in any of the aspects.
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). Local muscoloskeletal doctors that were asked for their opinion said they had reviewed the case file, but also said they did not know what to do, so they said, to best wait and see but not do anything, and did not seem interested to consult or offer treatment. So they were of no use. 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- and doctor-/party-independent specialist review board, expert reviews, as well as insurance found these drug related complications to be entirely "accidental" (upon which the relevant insurance stepped forward to voluntarily offer payment), related to the aftermath of a non-standard very high dosage drug regimen used during a gastroscopy on an outpatient basis that was done to investigate the question of a possible gastric primary tumor (CA 72-4).
Surgical intervention attempts were tried by local University hand "specialists", but not only technically and functionally deficient, but also unauthorized / uninformed, and had caused further complications (venous thrombosis throughout the hand, severe inflammatory suture reactions, tendon suture failures, 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 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. It appeared that for the first time an actual specialist looked at the hand. Previous tests were reviewed, and all tests were repeated comprehensively over a number of days. Even though the type of growth containing synovial, capillary and myofibroblast cell growths was never sufficiently characterized to explain why it spread locally, 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 might typically end up yielding synovial sarcoma.
Surgical excision with a large safety margin was found to be the only treatment option. Decision making in terms of properly defining informed consent then 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 ended up deciding 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. The marker CA 72-4 returned to normal after 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. The companies - not just Otto Bock - offer no apologies. 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. -- By 2017, my cable sheath patent is published, people that see it installed say it is by far the best improvement they have seen for this application ever (I know, that is why I made it), and I switched to using Hosmer hooks and TRS Prehensors almost exclusively; I hardly any more use prosthetic hands as they seem mostly in the way. -- As always, I am interested in collaborating towards development of new material.
- I wear a range of myoelectric options that are still subject to testing, further development and adaptation. Finalized observations and improvements are published here. One first significant achievement was the creation of a small plastic device to reliably hold a guitar pick also with an iLimb (Touch Bionics, Great Britain). That technology is less promising for very heavy usage than it is fun, and cool. I know, because I tested that.
- I do use 3D-design and 3D-printing in order to explore various aspects of prosthetic arm technologies.
- 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. They use up public research money and never apologize for not delivering anything useful. - By 2017, an advanced rendition or installation of body powered prosthetic arm technology by far surpasses comfort, functionality and cost effectiveness compared to any other, except not wearing a prosthetic arm.
- 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, but if one is street wise and talks to people the actual number of non-wearers is probably around 80% or more. This industry's failure rate is mind boggling.
- An 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, and a competitive market inasmuch as true function is concerned. Further steps include separating design from manufacturing, separating sales from product testing. Last but not the least, the current sales and incentives model providing that prosthetists have to make their living off the (roughly) 30% of added overhead on all hardware sales is not useful. That model has prosthetists start their clients on using anything that is expensive, in the current times myoelectric arms, first. At the same time, users or clients usually may not be treated too well, by prosthetists or doctors, when they are critical regarding prosthetic arms. But given the really low commercial quality of that produce, massive criticism is the only sensible first reaction. That forks user behaviour into two lanes: the submissive behavior towards providers that usually sanction criticism harshly, and, the real life response which mostly consists in not wearing, using, repairing or buying a prosthetic arm.
- 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.
- Ah, yeah I guess I should have mentioned that earlier - work, and work tasks, ADL as defined by what I do - these do seem to play a role ; ) Or maybe you could have guessed that yourself. Not always are the obvious facts stated first. Prosthetic arm development under real life conditions usually ends up with sweat, rashes, blisters and maybe even a bit of damage here or there. One goal is to keep damages really low.
- 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. You can still expect that I go about them with the same diligence and finely grained attention span as I would deal with technical questions.
- There is a fair degree of nonsense that is fun to pursue, as well. But, that does not mean we confuse that with real life requirements (above).
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.