As most of you know, Michael has 2 surgeries in the past 7 months. NF1 was removed from C2/C3 of the spine and NF1 was removed from the left clavicle.Post op went well but was pain full and tiring. On April1 2009 Michael was forced back to work by his LTD Insurance company and tired [...]
Archive for the ‘NF1’ Category
April, May, June and part of July 2009…….
Posted: July 20, 2009 in Long Term Disability, NF1Tags: NF1
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On Tuesday this week we went back to VGH to see the surgeon for post op follow up. Dr Zwimpher was happy with the progress of recovery. He ordered a X-ray and things are looking normal. Michael will continue to do stretching exercises. Now we are still awaiting the decision of Long Term Disability. Been [...]
A Acoustic neuroma: Benign tumor of the eighth cranial nerve (acoustic or hearing nerve) which causes hearing impairment (also called acoustic neurinoma or acoustic schwannoma). Allele: Specific form of a gene. Each individual has two copies of every gene, one inherited from each parent. The particular form of the gene inherited [...]
In December 2008 Michael under went the 2nd operation of the year. He had a NF1 fibroma removed from his C-Spine, between C2 and C3. We were blessed to have a private room at VGH and spent the Christmas holidays (December 22 – 27th) there together. The BEST holidays we have ever had together. Now [...]
Gleevec Holds Potential As First Drug To Successfully Treat Neurofibromatosis, Scientists Report
Posted: January 29, 2009 in NF1ScienceDaily (Oct. 31, 2008) — Researchers at the Indiana University School of Medicine report that the anti-cancer drug Gleevec holds out promise to become the first effective treatment for neurofibromatosis, a genetic disease that has resisted treatments until now. The research team is conducting clinical tests of the drug following successful laboratory tests and a [...]
This week we called Dr Zwimphers’ office for a follow up regarding a possible surgery date. And we got one!!! A tentative date has been set for December 23 2008!! We have marked it on the calendar and VGH will call to confirm the date on December 22 2008. In the meantime the Pre-op admissions [...]
Long time no post. Michael had his first surgery for the year on September 9 2008. We arrived at Vancouver General Hospital (VGH) early that morning after spending the night in Vancouver close to VGH. Michael had a Neurofibromatosis type I (NF1) tumor removed from behind is left collar bone. The operation was a success [...]
We are back from VGH – saw the surgeon today. Michael will have 2 operations hopefully fairly close together but not possible at the same time. The tumor behind the left collar bone will be removed 1st and then they will proceed with the one in the spine at C3. According to the surgeon Michael [...]
Michael just called me from work and he is having a rough day with pain and asked if I could contact TEKSmed to see if there is anyway they can push the consult with Dr Zwimpfer sooner. Michael’s anxiety and pain levels are really peaking at the moment.
I want to let you know that I just got a call from Beatrice at Dr. Keyes office, Dr Zwimpfer wants to see Michael on June 25 @ 3pm – this Dr will do the surgery as well. We are surprised however not to have gotten the call from TEKSmed – I have contacted them [...]
