I am Wolf Schweitzer, born in 1967, and in May 2007, my right middle hand started to exhibit a localized region of swelling that was painful. In September 2007, I started to get the first medical diagnostics and surgery.
The core problem were recurring, increasing, what appeared to be locally spreading, and locally metastasizing tumorous tissue proliferations, initially with a cyst-like bone defect, in my right hand. Histologically, these tissue nodules and sheets contained well-formed, at times densely packed capillaries/blood vessels, synovial tissue, and myofibroblasts, without clear histological signs of malignancy but without a delineated capsule, but with local recurrence and spreading, in part also with scattered white nodules. No infectious parameters were identified in locally collected fluid, blood tests, or in the histology of biopsies. They required actual treatment, because of local recurrence and because of local spreading, and also because they were very painful.
The damage started between metacarpals II and III and ended up with spread also between metacarpals III 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 the beginning of October 2007 and April 15th, 2008, with little exception. New occurrences of tissue growths were noted in January 2008 and in March 2008; in one particular surgery, two lumbrical muscles were removed that contained scattered white nodules (looking a bit like Amanita muscaria) that exhibited an appearance as if spreading or metastasizing locally. The visual appearance was rather striking, and even the surgeon that so far had appeared to be rather unfazed did appear to lift an eyebrow. Should have taken a photo though, not sure he did. Prescription 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. 200 mg Tramal tablets would yield 1/2 an hour of peace. Some drugs that were tried made the pain even worse. The local competence center hospital pain clinic specialist anesthesiologist suggested to not rely on pain medication but to take walks in the forest.
What type of tumorous soft tissue process this was, did not become entirely clear at first, particularly with respect to the question of why it spread with what appeared to be spreading/metastasizing nodules. Both local competence center hand and orthopedic clinics were consulted but the doctors did not express any practical extent of interest in any of the aspects, so they were asked, but no consultation occurred. The head of soft tissue tumor surgery of the respective local competence center hospital clinic suggested that, if I would just wait, maybe, it may go away by itself; a reaction that appeared to mark the general attitude of these people.
There was no indication for infectious, autoimmune, rheumatic, or metabolic disturbance; however, the CA 72-4 tumor marker was clearly elevated. After a total of six surgeries (Oct 07, Nov 07, Dec 07, Jan 07, Mar 08 #1, Mar 08 #2), and almost persistent pain throughout, with only little breaks, the surgeon that treated me decided that it was time for a gastroscopy to investigate the origin of the elevated CA 72-4 marker. Due to excessive gag reflex (I had warned the gastroenterologist about this before) (I still had gastric tears after the gastroscopy), I ended up getting administered an unusual combination of what incrementally added up to an also rather highly dosed substance combination (i.e, under regular Doxycycline 2 x 100 mg daily (with an increase of Dormicum halflife from ~3,5 to ~6,2 h) a combination of 7,5+2,5 mg (i.e., 10 mg) Dormicum intravenously, combined with Haldol and Fentanyl, (0,75 + 0,125 ml), was given). Reportedly, I woke up a lot later than originally planned, which seems to have gone along with the unusually high dosage and strange medication. Then I got released to go home, as this had been an outpatient gastroscopy.
A few more hours later, some serious and rather violent complications to my health status occurred. As it turned out only a bit later, these had involved these unapproved and unsound prescribed drug dosages, which was a thing that appeared to me once I had obtained and carefully read that gastroscopy report, as their main cause, which then was also confirmed later by expert review by the head of an anesthesiology liability/insurance board. When I had myself admitted to hospital with these serious violent complications, I had not considered these circumstances at all due to the nature of such, but also, that was not recognized at that local competence center hospital, where they apparently did not perform any substance or drug screening but instead implemented a faulty psychiatry diagnosis that they later did not correct even when faced with factual contradictory findings and opinions. Surgical intervention attempts to fix the damages were tried by local hospital hand clinic competence center, but technically deficient and also unauthorized/uninformed, and had caused further complications (further venous thrombosis throughout the hand, severe inflammatory suture reactions, tendon suture failures, lack of sufficient postsurgical anticoagulation medication) that were neither considered, recognized, assumed, tested, or treated; some of these - not the tendon failure, alright - however appeared to make the already severe pain worse. At one point in time, among the many things that there were and that I do not remember too well, I still clearly remember explicitly objecting to that surgery they planned without discussion and I remember them saying "put him under, so he stops addressing issues". That is why I still wonder how well they documented my consent, really. So, that complication was fixed and repaired and stitched up and all was good or so it appeared. All the while, the underlying condition of growing and spreading tissue nodules had remained untreated for the time being.
As a later consequence and without going into further details, these doctors also could not bill all of their costs to my insurance. In due process, the head of an insurance- and doctor-/party-independent specialist review board, and further expert/insurance reviews, identified these gastroscopy/substance-related complications to be a consequence of a critical post-gastroscopy incident, with a problematic medication, that then was duly reported as such (critical incident reporting). The relevant accident insurance stepped forward to voluntarily offer payment to my health insurance, also overturning initial hospital-doctor-based diagnoses, largely also based on reports drawn from elsewhere, which however would go too far to detail here. It suffices to say that accident insurance looked at the relevant local competence center hospital doctors' reports and dismissed them as lacking credibility even though that meant they had to pay - that was how little valuable these evaluations and reports were rated. Turned out that complication, which had occupied so many minds so needlessly, clearly was an aftermath of a non-standard very high dosage drug regimen used during a gastroscopy on an outpatient basis that had been performed to investigate the question of a possible gastric primary tumor (CA 72-4).
That was the moment when we basically switched teams, which was, as it were, about a month after the post-gastroscopy incident, my hand was still there, stuff growing inside, some other stuff healing. We then sought help from 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 actually looked at the hand, and expressed an actual interest in examining, understanding, and considering actual treatment. Previous tests were reviewed, all reports by previous doctors were considered, and they were evaluated, all tissue samples reviewed, and all clinical 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 around locally, assumptions narrowed down to these being locally metastasizing but histologically benign growths that required excision with a safety margin. And there was a rather clear risk factor in my biography: I had used both hands - but that right hand very 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 after some time, might typically end up yielding synovial sarcoma. There seems to be literature about that, too. And so while that characterization was not perfect, it was sufficient to plan further treatment.
So, surgical excision of the tissue growth with a large safety margin, in my right hand, was found to be the only viable treatment option, in light of all results combined, as the surgeon clearly stated after days of re-testing and examination, review, and more radiology. So while the biology of the nodular growth was not the most aggressive ever, the location - middle of the hand - was just rather unpractical for excision with a sufficiently wide margin. It was going to be either a massively extensive reconstructive surgery with tissue collection from all over my body, also with the risk that any new growths later would be hard or impossible to discern from other tissue changes, and with the clear risk and the possibility of several further surgeries to get things going, or with the risk that there would be little or no function to the reconstructed parts, or, amputation.
Between those two, amputation was chosen, but, ultimately, and legally, not by me. Decision making, also in terms of properly defining informed consent, was taken very seriously - at least by everyone around me and myself; 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 over at least half a year (painful tumor growths, extensive vessel thrombosis, severe inflammatory suture reactions) but also due to the overall stress situation. So I asked a close family member to take over power of attorney, and as a consequence, she and the surgeon discussed technical options together (in a rather lengthy discussion also without me present), and they ultimately ended up making that final decision. It was also a relevant factor that at that time, I only was employed under single year / annual contracts, which in such a situation constituted significant extra pressure to get back to functioning rather rapidly - rather than picking a type of treatment that would require a very significant extra effort, additional surgeries and time away from work, and with doubtful functional outcome. A right below elbow amputation was performed on April 15th, 2008 and I subsequently returned to work.
Then, the hand was looked at again, by a pathologist. In addition to tumorous growths, the hand tissue was then found to also contain extensively thrombosed veins and capillaries as well as extensive histiocytic reactions to surgical suture material as a correlate for the massive pain, that the competence center doctors neither had addressed nor treated. So, the massively excessive pain could be, in hindsight, attributed to recurring tumorous nodules containing vessel proliferation (known to be painful as such already) but also, by profuse thrombosis, and extensive, post-surgery related inflammation. Initially and due to being overwhelmed by both the previous treatments and hospitalizations and the amputation, I suffered from a 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.
In the end, this was nothing but the (unfortunately rather complicated) consequence of escalating growth resulting in scattered tissue nodules inside my hand, that could have arguably been managed better right from the outset, and, every step along the way, and that, at least ultimately, was treated surgically, after extensive review, discussion and formal authorization with/by my family representative. The relevant critical incident pertaining to the gastrectomy was reported and communicated, but no criminal charges were pressed from our side. Still, the external aftermath may have been rather considerable, from the little I heard.
The story also from view of the doctors 0f that local "competence center" hospital that had so many problems with me, may have seemed so pervasive and intriguing, that it appears they found a hard time keeping some edited version of these medical records (which, again, were not even seen as "true" from view of insurance review,...) under lock from doctors that are not involved with my medical treatment (hadn't been there in 13 years to be honest); but rumors have it that among the things that get transported back to me, some sneaky "young doctor" was said to have read up on the one or other one of her old "acquaintances" in these seemingly not so well protected medical records, including mine, at that local "competence center" clinic, then going out to talk about that, allegedly spreading it like gospel, to create quite a bit of mess with her "news". At any rate, you should have seen these eyes, I had not known my contemporaries could rip them open that wide. Fascinating also change of expression once I ohinted at some possibilities from my side. Regardless of that, and elsewhere, the aftermath of that story telling was so very far less "hugs and kisses" than the aftermath of the whole above thing had been to begin with. But, then that is probably also what we love our local "competence center" hospital and our "young doctors" for.
You can send me an e-mail to wuff at swisswuff.ch.