This is good information to have I would not have said it better myself. what I do with my 23 year old Twin Boys is I have them get a complete physicial every year and along with their annual check-up they have a calcium level drawn and a Parathroid Hormone level checked. If the calcium and parathyroid hormone blood levels are increasing it is time to start looking at the parathyroid glands for any tumor activity. These tumors are usually benign in MEN 1 but bear watching and possible removal (parathyroidectomy)
I too attended the seminar at MD Anderson and it was a very informative seminar on the different topics that they put on. I have recently attended the International Endocrine Surgeons Seminar in July. Physicians are realizing that they need to have more up to date reading material to give to patients and their families. Hageman Foundation is the only source/non profit to provide this type of educational materials. Also, Hageman Foundation for Multiple Endocrine Neoplasia in colloboration with Mayo Clinic is at this time in the process of program planning a Seminar September 15-18th in Rochester, Mn. Please send me your suggestions for program planning and mark your calender for these dates. You can look on this site for our save the date Bookmarks contact me with your information and I will send you the information.
Also anyone interested in a book and CD from InterScience Institute that describes the NeuroEndocrine Tumors and what testing should be done and those diagnostic codes and testing codes for these tumors and lab test the insurances want to see (it will allow your insurance companies to better understand the specialized test the physicians are ordering, and thus will cut down on the rejection notices you receive!!) just send me your contact information and I will get this information to you. InterScience Institute has graciously donated these books and CDs to Hageman Foundation to get this information into patients and physicians hands to better understand Neuroendocrine Tumors and providing the codes to help you get your testing paid in a timely fashion.
Linda Hageman, RN
A tool to use when searching to find that major medical facility that has the most expertise for whatever your health issues are. Try www.health.usnews.com . This rating is not influenced by any medical centers or drug companies. I think this is one of the best health tools and information to search when trying to find options near your home or out of town. Don’t miss out on this valuable unbiased information.
Linda Hageman, RN
Hi Christine,
Cleveland Clinic indeed had a great Endocrine Surgery Department and you do need a Endocrine Surgeon to perform this procedure. On this site there is a video of a surgeon performing the Whipple Procedure Laparoscopy at Mayo Clinic. Usually this does not really cut down on the surgery or recovery time as the Whipple is a very complicated surgery. Given the choice 4 years ago I would have definitely opted for the Laparoscopic Whipple Procedure. Cleveland Clinic has a very good reputation and I would feel comfortable with these surgeons for the Whipple Procedure. You have done your homework and know these physicians do several of the procedures a year and that is also very important. I wish you the best of luck and if you have any further concerns you can e-mail me directly linda@hagemanfoundation.org and I will reply. I would also call you if you send me your telephone number and we can chat on the phone.
Linda Hageman, RN
I feel I am standing on the cusp of living and dying, lingering in limbo while the world revolves around me. I am no longer useful but cannot be discarded just yet. My body is slowly betraying me, it will be harder to replace the muscle mass I have lost because my testosterone levels have plunged. I will never put on weight again, my pancreas will not supply the enzymes necessary to fully digest what I eat. On the other hand, my blood sugars are high enough to contribute to many other problems from vision problems to damage to all my organs. I do my best to get exercise but I have no ideas that such activity will make me stronger. Just more active. I look at my hands and my legs, they are wrinkled and weaker than they have been in years. I doubt I will ever recover.
It seems like the tide has turned against me and there is not much I can do to combat it. So, I stand idle while this all happens. Daily I consider tactics to combat the feeling of being overwhelmed by my apparent fate. That is most likely the basis for feeling like I want to be in another place, just where is not certain. But away from here and in a body that is not crumbling. My days of drinking are all but over and any other intoxicant is just not appealing. I have just been down the down road for too long, I am tired and out of steam. I wish I could sleep for a week and wake refreshed. But I know that I would just wake and feel groggy and disoriented like I do every morning. Rest does not always come with sleep. Less seldom now than ever. I worry at night about money and my health and my marriage. That robs me of any enthusiasm I might muster to work against all this.
Part of it too is the extreme loneliness of not having people around. I have become quite the hermit with the cancer. I have considered just closing my world down and not talking to anybody, a very small change in my life I can assure you. After a year of pain and infusions and sleeping constantly I have lost most contact with my friends. Just as my house and yard deteriorated while I was indolent with cancer. So much to come back from. Yet every day I do a little bit to get my life back. Some days, like today, I just see the long road and the perils ahead. Other days I can see the possibilities.
I dream that one day I will get my stained glass shop going. Creativity is such a release. I find that every now and then. A little encouragement from having done something creative. Or even just having done something. In that I envy my friend her ceramics work. She gets out there and creates. I just putter around and seem to never get any closer to my goal. The demons of melancholia have me in their cold clutches today. I will resort to medicines to ease my depression and anxiety. The one nice thing about being a terminal cancer patient, at least on paper, is that I had access to all the drugs of any kind I wanted. I settled for just some anti-anxiety meds because really, feeling anxious was the worst feeling. The pain I could almost deal with and I got off the pain meds as soon as I could. They were also killing me in small doses. There are just so many contradictions in my life recently. Taking meds to help this ailment but those same meds adversely affect another aspect of my health. These days I take anti anxiety pills and insulin. Not the long list I was on a year ago.
Screw it. I am going to take a minor anti anxiety pill and drink some rose wine. You should do the same.
Thanks For coming to Hageman Foundation to seek out information on the Whipple Procedure. If you are at the site there is an actual video o9f a Whipple Procedure being done with a Laprascope (no big incision, but surgery time for procedure about the same and so is the recovery time) .
Mayo Clinic is in Phonix, Arizona. You can go to their website and get further information on the Whipple Procedure www.mayoclinic.org
Linda Hageman, RN
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