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edriscoll

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Everything posted by edriscoll

  1. @bombsh3ll Thanks so much for the info and suggestion. I have been evaluated for a CSF and it was negative. But I completely understand the thought - I was told that scoliosis itself can cause the condition and the surgery certainly can. I'm not the least bit annoyed by your message. It is always worth making a suggestion to someone in case they haven't examined that particular scenario. I was not aware of the Youtube video or Dr. Carroll. The video is excellent. I think I will post a link on Facebook for our followers. I think it is worthwhile for people diagnosed with POTS and other
  2. During the 2nd surgery that was done to correct the failed fusion and problems with the 1st surgery, they used chronOs synthetic bone protein with success. For similar reasons as the ones you state, they felt it was a much better option than trying to harvest my bone. It is an individual recommendation and it is great to have options. I wish that all surgeons discussed the options with patients prior to making decisions. You are clearly educating yourself and that will give you the best outcome possible. Best of luck.
  3. It is great to hear that Jodi's daughter was helped and is feeling so much better. However, members should be aware that this center makes claims to "heal what other doctors cannot" as well as other claims to be the "only" treatment center offering cures for POTS. DINET cautions members to seek out physicians offering evidence-based medical treatments and practices. There are many causes for POTS and many that are still being investigated. Because of this there are cases of people with POTS whose symptoms resolve over time, sometimes with no clear explanation. In younger patients, particu
  4. Sorry for the delay in my response, I was out of town last week. I'm glad that my post gave you some things to think about and discuss with your surgeon. To answer your questions, the best guess my surgeon could give is that the dysautonomia was caused from a combination of trauma to the spine itself (specifically the thoracic spine) and the general trauma of the surgery itself. The surgery was 13 hours long and it required posterior and anterior fusions, blood transfusions and I was intubated for 3 days in ICU following the surgery. My neurologist, who treats me for dysautonomia, h
  5. I am weighing in here on spinal fusion surgery in general. My cervical spine is not fused, however, I am fused from T1 to L5 with 2 6" screws holding my pelvic bones stable along with a spinal cage in the front of my spine and 4 rods in the back. My surgery was originally done to treat scoliosis, with 2 additional surgeries to correct what was done the first time. I woke up from fusion surgery with dysautonomia. They believe that disruption to the thoracic spine and nervous system caused a type of dysautonomia similar to dysreflexia. I also have an autoimmune component in addition
  6. <p>http://www.ncbi.nlm.nih.gov/pubmed/11990670?dopt=Abstract</p>
  7. I am one of those people with the "strange" symptoms. I have tachycardia but I also have bradycardia quite often, usually within the same episode. At first I was diagnosed with POTS, but I think that was because it was the only dysautonomia disorder they could name. After more testing and observations, the neurologist and cardiologist agree that I have "General" dysautonomia - meaning I have autonomic dysfunction and many of the symptoms of dysreflexia (I have thoracic spine damage) - but my symptoms really don't fit into any one classification. I believe there are many more people out th
  8. Hello, I'm sorry to hear your daughter is ill. Our physician database has the information for 2 specialists in Australia. We are working on adding more international listings. In the meantime, we have one in Melbourne and one in Heidelberg. I don't know the distance or how far you can travel, but if they are too far away, you can call and ask for a referral to someone in your area. Specialists treating rare disorders like dysautonomia usually know other specialists. Here is their information: Dr. Murray Esler 75 Commercial Road, Melbourne, 3004, Australia 61 (0)3 8532 11
  9. edriscoll

    Beat the heat

    Great suggestion MarkA. The one I had died last summer and I have been borrowing my granddaughter's fan over the winter months. But she is sure to want it back this summer. I will check out the Ryobi - I like the idea of the 18V tool battery. Thanks.
  10. Managing & Enjoying Life After reading an article, use your browser's back button to easily return to the Table of Contents on this page. Surviving the Guilt that Comes with Chronic Illness by Amy Keys The Ins and Outs of Owning and Training a Service Dog by Ellen Driscoll Dehydration by Margaret Rose Lombardi Enjoying Life at National Parks by Hallie MacDonald Beat the Heat by Amy Keys Meet the Member: Erin's Story by Chelsea Goldstein Medical Q & A - Member Questions Answered by DINET's Medical Advisors Updated - Research and News about Dysautonomia and Related Illnesses Up
  11. We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org Related Questions from Two Members: Question #1 from Member Bxxx: Hello, Please can you explain how someone can feel extremely lightheaded and faint when they are sitting with a completely normal he
  12. By Ellen Driscoll When an animal joins your life, you receive health benefits, both physical and mental, that are far beyond what most people expect. Pet ownership has proven to have a positive impact on depression, anxiety, blood pressure, and heart rate changes, to name a few. Add all of that to the companionship, loyalty, and love they give us, and is it any wonder that 68% of U.S. households have at least one furry family member? For people living with a chronic illness, a pet specially trained as a service animal brings another priceless asset...independence. When most peo
  13. The discount is for new subscriptions, is this a new subscription?
  14. There is a page of our site called "Open Recruitment Studies" This list doesn't include every study out there, but it does include many of the studies specific to POTS and other Dysautonomia Disorders. You can visit the page here:
  15. There is no evidence that POTS or other dysautonomia disorders resolve because of age. And it is absolutely possible to develop POTS and other dysautonomia disorders at any age, even though POTS is more common with women during the "child-bearing" years. That being said, as DINET has been hearing from many women over the age of 50 who are newly diagnosed or in the process of being diagnosed, we have begun questioning whether the diagnosis is being complicated by age and whether the number of women with these disorders is under-reported. DINET conducted an informal survey of our members
  16. April is National Volunteer Month. DINET is 100% staffed by volunteers; volunteers who generously give some of their precious spoons to DINET so we have this community here when we need it most. Please take a moment to join me in thanking these amazing volunteers. DINET's volunteer staff: (They are listed by their member names to respect their privacy but also so that you can reach out to them on the forum if you would like to) Forum Volunteers: MomtoGuiliana Clb75 Missy M Pistol Board of Directors & Newsletter WinterSown Goldstec
  17. I also have temperature swings so radical that I am frequently walking around the house in a sleeveless shirt with a zippered hoodie on but pulled down around my elbows. This gives me the option of getting warm quickly but cooling down quickly as well. Some days are fine but I always need to be aware of overheating and be able to respond quickly. If you are not sweating, you need to discuss that with your doctor right away. Also, remember that when you do sweat you are losing a lot of fluid and sodium, so electrolyte-rich drinks are important. One item that I discovered that has been a li
  18. T H R I V I N G... 5 Tips for Traveling with Dysautonomia by Chelsea Goldstein Finding Workarounds by Amy Keys Technology and Chronic Illness by Reanna Mathis Living with Hyperadrenergic POTS: A Personal Story by Susanne Rimm Finding Balance by Trudi Davidoff Meet the Member: Isabelle's Story by Chelsea Goldstein Medical Q & A - Your Questions answered by DINET's Medical Advisors Updated - Open Recruitment Studies Updated - Research and News about Dysautonomia and related Chronic Illnesses Celebrating our Volunteers: Melissa Milton: 2018 Rare Artist Contest brings Awar
  19. T H R I V I N G... 5 Tips for Traveling with Dysautonomia by Chelsea Goldstein Finding Workarounds by Amy Keys Technology and Chronic Illness by Reanna Mathis Living with Hyperadrenergic POTS: A Personal Story by Susanne Rimm Finding Balance by Trudi Davidoff Meet the Member: Isabelle's Story by Chelsea Goldstein Medical Q & A - Your Questions answered by DINET's Medical Advisors Updated - Open Recruitment Studies Updated - Research and News about Dysautonomia and related Chronic Illnesses Celebrating our Volunteers: Melissa Milton: 2018 Rare Artist Contest brings Awar
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