Ueli Raz hat seinen eigenen Beitrag kommentiert.
Gruppe: Chondrosarcoma Support Group Community
Thank you for the comments! - Pages in German make two parts. 1. Where the lightning strikes, one can not predict. 2. If you are close to where the lightning strikes, you have bad cards with implants. - I have my Titanium since 16 years in the shoulder, and I always took care not to get into a thunderstorm. Yesterday, I was careless and did nor expect that the storm may com from the mountains down in the flat land. I will behave more careful again... (55 years ago, a lightning hit the alp hut where our family was in. A small part of the lightning went through my body, so the left leg was stiff during three days. But then I got okay again.)26. Juli 2018 07:22
Ueli Raz hat etwas in Chondrosarcoma Support Group Community gepostet.
 Are You Experienced? Excuse me the topic of weather, but the question is serious. This afternoon I got into a thunderstorm, with constant drumming of thunder for half an hour. Luckily I was in the forest, upon Zimmerwald near Bern, Switzerland, exact at the time of this webcam-picture (https://bantiger.roundshot.com/). I have in the left shoulder what you see: four plates and many screws made of titanium (together with the homemade materials fibula and beck crest - ct scan, viewed from behind). What about the danger? Is it more dangerous under lightnings with titan in the body than without? Has anyone experiences? Do your doctors inform you about such a problem? I have very good doctors but at this question, they shrug their shoulders. Gruppe: Chondrosarcoma Support Group Community Nancy AnnInteresting post, I will be looking for recommendations. Never gave it a thought25. Juli 2018 20:22 Gruppe: Chondrosarcoma Support Group Community Ali Rogers KarpaI don’t know. I have an amputation and use a prosthetic made of metal. I may be a worse target than you! I’ll ask.25. Juli 2018 21:46 Gruppe: Chondrosarcoma Support Group Community Rhonda Beshansky CallahanI have titanium pins and rods in my spine.I have problems when it is very cold put or very humid out. Stiffness and pain, but I dont think lightening would effect titanium.25. Juli 2018 21:47 Gruppe: Chondrosarcoma Support Group Community Astrid HarbringI have no idea, but I never got a warning.25. Juli 2018 23:11 Gruppe: Chondrosarcoma Support Group Community Sam ColemanI don’t think I was ever warned about the metal I had in my body26. Juli 2018 01:13 Gruppe: Chondrosarcoma Support Group Community Ueli RazThank you for the comments! - Pages in German make two parts. 1. Where the lightning strikes, one can not predict. 2. If you are close to where the lightning strikes, you have bad cards with implants. - I have my Titanium since 16 years in the shoulder, and I always took care not to get into a thunderstorm. Yesterday, I was careless and did nor expect that the storm may com from the mountains down in the flat land. I will behave more careful again... (55 years ago, a lightning hit the alp hut where our family was in. A small part of the lightning went through my body, so the left leg was stiff during three days. But then I got okay again.)26. Juli 2018 07:22 Gruppe: Chondrosarcoma Support Group Community Elizablest MoonroseWhen I do a google search in English, I find a lot of information about it. But it contradicts. Some sites say no, it is not possible. Some say, only slightly possible, but unlikely. Some say yes it's possible if you are in the highest location where lightning would be drawn to. I'm glad you asked that question! I never considered it. I have three titanium rods in my pelvis.27. Juli 2018 07:13 |
Are You Experienced? Excuse me the topic of weather, but the question is serious. This afternoon I got into a thunderstorm, with constant drumming of thunder for half an hour. Luckily I was in the forest, upon Zimmerwald near Bern, Switzerland, exact at the time of this webcam-picture (https://bantiger.roundshot.com/). I have in the left shoulder what you see: four plates and many screws made of titanium (together with the homemade materials fibula and beck crest - ct scan, viewed from behind). What about the danger? Is it more dangerous under lightnings with titan in the body than without? Has anyone experiences? Do your doctors inform you about such a problem? I have very good doctors but at this question, they shrug their shoulders.
25. Juli 2018 18:26
Ueli Raz hat seinen eigenen Beitrag kommentiert.
https://www.ueliraz.ch/fb-files/ollier-maffucci.htm
Gruppe: Olliers Disease Appreciation Society
For friends not familiar to read this kind of Chinese spoken information, I wrote two phrases. Forgive the Googlenglish: my last visit of english spoken territories went to Thurso, Logh- & Inverness, Pwllheli, Aberystwyth - more than 40 years ago and no places where a pure English was required (but, of course, I visited noble places, too, for example the villa of the Vogue's editor in Godstone/Surrey, smuggled in by the Swiss Au Pair girl): https://www.ueliraz.ch/fb-files/ollier-maffucci.htm22. Juli 2018 19:53
Ueli Raz hat Irene Spigaglia Rannous Beitrag kommentiert.
Gruppe: Save Frank Zappa's Legacy
Will this happen in Hinterfultigen?22. Juli 2018 08:35
Ueli Raz hat seinen eigenen Beitrag kommentiert.
Gruppe: Olliers Disease Appreciation Society
Here the link to the PDF-Version of the first article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3248776/pdf/onc1771.pdf21. Juli 2018 06:49
Ueli Raz hat etwas in Olliers Disease Appreciation Society gepostet.
Hi, today I found two publications on Ollier Maffucci, accessible for anybody and not older than six years.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3248776/
http://www.elis.sk/download_file.php?product_id=3792&session_id=tfee54n5n30tnmauq3vdorsr34
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3248776/
http://www.elis.sk/download_file.php?product_id=3792&session_id=tfee54n5n30tnmauq3vdorsr34
20. Juli 2018 18:45
Ueli Raz hat Amanda Grays Beitrag kommentiert.
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Gruppe: Chondrosarcoma Support Group Community
It grows and it hurts (picture end of 2012, ten years before was another chondrosarcoma in the humerus, same side)19. Juli 2018 15:43
Ueli Raz hat Irene Spigaglia Rannous Beitrag kommentiert.
Gruppe: Save Frank Zappa's Legacy
Some farts of F. are not really good.16. Juli 2018 10:36
Ueli Raz hat Irene Spigaglia Rannous Beitrag kommentiert.
Gruppe: Save Frank Zappa's Legacy
Grand Frank for ever!9. Juli 2018 17:50
Ueli Raz hat Bayard Armins Beitrag kommentiert.
http://doi.org/10.5169/seals-112942
Gruppe: Anno Dazumal....wies früher war....
Hier der Link zum PDF von Hanns In der Gand, Pfeiferweisen aus dem Eifischtal (Val d'Anniviers), 1931. Das ist ein kluger und lustiger Text über die Musik der Anniviarden, früher nur zwei Male im Jahr gespielt, und nur zwei Male im Jahr den Jüngeren im Tal unterrichtet... Ich hatte einige Melodien im Kopf und konnte sie gut wiedergeben, weil sie ganz ähnlich tönen wie bestimmte indische Stücke, die ich in den 90er Jahren studierte. Als ich einmal den Hang von Niouc nach Chippis runterwanderte, musste ich sie ständig vor mir herpfeifen. Nur der Wein fehlte, um ein alter Anniviarde zu werden. http://doi.org/10.5169/seals-1129429. Juli 2018 16:46
Ueli Raz hat Bayard Armins Beitrag kommentiert.
Gruppe: Anno Dazumal....wies früher war....
Grandios!9. Juli 2018 09:34
Ueli Raz hat Irene Spigaglia Rannous Beitrag kommentiert.
Gruppe: Save Frank Zappa's Legacy
Francis does Alice Cooper.6. Juli 2018 19:01
Ueli Raz hat Dana Parness Raz Beitrag kommentiert.
http://www.orthopaedie.insel.ch/de/ueber-unsere-klinik/schulter-ellbogen-sport/
Gruppe: Multiple Enchondromatosis aka Ollier's Disease support group
In Bern (as anywhere, I think), they treat not the disease, but the individual tumors (after a chondrome has mutated to a chondrosarcoma). I had a tumor in my shoulder resected twice, 2002 and 2013. In case your daughter has trouble in the shoulder, I give you the addresses of my admirable doctors:
a) 2013: http://www.orthopaedie.insel.ch/de/ueber-unsere-klinik/schulter-ellbogen-sport/ (Prof. Matthias Zumstein and Charles Dumont) b) 2002: http://www.schulterzentrum.ch/Willkommen.html (Prof. Ralph Hertel)2. Juli 2018 15:02
Ueli Raz hat Irene Spigaglia Rannous Beitrag kommentiert.
Gruppe: Save Frank Zappa's Legacy
55 years ago, we had this kind of liquor at home - nobody dared take a sip!2. Juli 2018 08:03
Ueli Raz hat Andreas Cains Beitrag kommentiert.
Gruppe: Olliers Disease Appreciation Society
In Vienna there is an old tradition of the avant-garde: first Beethoven, then Schoenberg, since 20 years the Ollier-surgery. When in 2002 in Berne the chondrosarcoma in my left upper arm and shoulder joint was resected and replaced by the fibula bone transfer, I was also cared by a young nurse with the famous Austrian accent. She said she was from Vienna. Last year (2001 or 2000) she had her first patient: it was a five-year-old boy with the exact same operation as me ...24. Juni 2018 05:31
Ueli Raz hat Jasmine Johnsons Beitrag kommentiert.
Gruppe: Chondrosarcoma Support Group Community
I had two chondrosarcomas as mutated chondromas (Ollier disease) in the left shoulder. 2002 in the upper arm, 2013 adjoining in the acromion. The pain was not great, but you saw the tumors grow. The pain mostly was in the forearm, I thought having a tennis elbow.16. Juni 2018 16:39
Ueli Raz hat Dieter Pospichals Beitrag kommentiert.
Gruppe: Save Frank Zappa's Legacy
Klar.13. Juni 2018 21:09
Ueli Raz hat Kelly Lynns Beitrag kommentiert.
Gruppe: Olliers Disease Appreciation Society
The same story with me: many operations up to 19 years old. From then on no problem with Ollier disease. From end of age 42 on, soft pain in the left shoulder. At 45 MRIs, PETs, Scintigraphs and CTs, then resection of the chondrosarcoma in upper arm and shoulder joint with transfer of the left fibula. 10 years later again pain in the left shoulder, 2013 resection of half of the 2002 transfered fibula and of the chondrosarcoma of the acromion (shoulder roof), transfer of a part of the left beck bone.5. Juni 2018 14:30
Ueli Raz hat etwas in Olliers Disease Appreciation Society gepostet.
https://www.ueliraz.ch/2018/morbus-ollier.htm
Hi, I made a very short GIF on my website to lead potential visitors to the fundraising page for Ashley Eakin's movie. You see myself 35 years ago in long hairs - I tried to divert the painful stare at my arms towards another part of my body. https://www.ueliraz.ch/2018/morbus-ollier.htm
30. Mai 2018 19:47
Ueli Raz hat Andreas Cains Beitrag kommentiert.
Gruppe: Olliers Disease Appreciation Society
Also thank you from little Switzerland!18. Mai 2018 14:44
Ueli Raz hat Richard Sermiers Beitrag kommentiert.
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Gruppe: Unser schönes Wallis
In den 1920er und 1960er Jahren von meiner Grossmutter gepflegt. In der Freizeit ganz früher war die Gärtnerin Helene Wild auch Tennisspielerin auf Pradegg:13. April 2018 07:58
Ueli Raz hat etwas in Olliers Disease Appreciation Society gepostet.
http://www.ueliraz.ch/segmenter-dicom/index.htm
Hello. Today, I made an introductory manual for a software you may be interested in, called Segmenter Dicom Viewer (1 month free, then 20 Euro). After you have made CTs and PETs, you get a CD by the hospital with an included program that hides more than it would show you what it should. The german Segmenter Dicom Viewer shows you the regular pictures in the three axis, together with all the pictures in 3D - through the body as it was scaned in every possible position you want. (Dicom ist the worldwide name of digital files out of x-ray, ct and pet-machines.) You find this short wordless, so international manual, together with some examples, at this address: http://www.ueliraz.ch/segmenter-dicom/index.htm
13. März 2018 14:41
Ueli Raz hat Raelene Bigallas Beitrag kommentiert.
Gruppe: Olliers Disease Appreciation Society
The operation produces a crack in the ordinary everyday life. After the surgery, your job is to rebuild everyday life as quickly as possible. After a week at home, the disease should no longer be in the center. You have to make sure that the school is in the center again: the interest in the outside world, in writing, in arithmetic, in language. What we most hate as patients is oddity, also in the "good" sense of heartfelt attention (I'm 61 and had many operations in childhood). If we are allowed to forget our own situation and allowed to turn our attention to normal life - in case of your daughter to the school - we will quickly get well and even happy again.6. März 2018 13:19
Ueli Raz hat seinen eigenen Beitrag kommentiert.
Gruppe: Olliers Disease Appreciation Society
It was a PET-CT-scan, this special picture composed by the software, only in this small size. The software delivered by the hospital does no longer work on Windows 10, and the programs which still read the datas do no more create this picture. The cape was put in the picture by myself.19. Februar 2018 13:58
Ueli Raz hat etwas in Olliers Disease Appreciation Society gepostet.
 I hesitate to show this picture. But I think it may be informative for members of this group and at the same time abstract enough not to hurt sensitive persons. The PET-CT-scan (corr. U.R.) was made at the Insel hospital in Bern 2014. The right arm is short and had several surgeries from the fingers to the shoulder in the years from 1962 to 1976 (born 1957). Also in the sixties a rip and the hip on the right side had operations. On the left side, the shoulder had 2002 and 2013 a resection of chondrosarcomas with a tranfer of the left fibula 2002 and a piece of the hip 2013. In both hips, the hinges (or joints) of the sacroiliac are overgrown by chondromas, so there is a certain tension in the hip region - mostly disturbing early in the morning after laying short five hours in bed. Gruppe: Olliers Disease Appreciation Society Darlene RhodesWas this a scan or X-ray?18. Februar 2018 22:25 Gruppe: Olliers Disease Appreciation Society Ueli RazIt was a PET-CT-scan, this special picture composed by the software, only in this small size. The software delivered by the hospital does no longer work on Windows 10, and the programs which still read the datas do no more create this picture. The cape was put in the picture by myself.19. Februar 2018 13:58 |
I hesitate to show this picture. But I think it may be informative for members of this group and at the same time abstract enough not to hurt sensitive persons. The PET-CT-scan (corr. U.R.) was made at the Insel hospital in Bern 2014. The right arm is short and had several surgeries from the fingers to the shoulder in the years from 1962 to 1976 (born 1957). Also in the sixties a rip and the hip on the right side had operations. On the left side, the shoulder had 2002 and 2013 a resection of chondrosarcomas with a tranfer of the left fibula 2002 and a piece of the hip 2013. In both hips, the hinges (or joints) of the sacroiliac are overgrown by chondromas, so there is a certain tension in the hip region - mostly disturbing early in the morning after laying short five hours in bed.
18. Februar 2018 15:32
Ueli Raz hat etwas in Olliers Disease Appreciation Society gepostet.
Hi
Today, I wrote in German a note in my blog (outside facebook) with two links to the diseasemap for Ollier's and to the current survey of the John Hopkins University, i.e. to the post here below of the 6th of January. This second link is accompanied by a picture showing the text (screenprint); the two e-mail-addresses were made unreadable.
http://ueliraz.ch/WordPress/
I hope some more German speaking people will find the way to our group, to the scientific survey of Dr. Sobreira and to the deseasemap.
Thank you to let me join the group!
Today, I wrote in German a note in my blog (outside facebook) with two links to the diseasemap for Ollier's and to the current survey of the John Hopkins University, i.e. to the post here below of the 6th of January. This second link is accompanied by a picture showing the text (screenprint); the two e-mail-addresses were made unreadable.
http://ueliraz.ch/WordPress/
I hope some more German speaking people will find the way to our group, to the scientific survey of Dr. Sobreira and to the deseasemap.
Thank you to let me join the group!
30. Januar 2018 18:49