cordellia Posted March 30, 2011 Report Share Posted March 30, 2011 greetings all,still wandering about in mayo-land. lots of testing. the consensus so far is: orthostatic intolerance-- more autonomic testing tomorrow. they also throw POTS into the conversation--we think because of 30 point HR increases that were documented on holter. unsure of the particulars. will not see neuro until the very end of our stay. each time we dig--we are told (politely) that this will be covered with the neuro. to date have had consults with: neuro, a pain management specialist (not productive-- we did not click and she started out by suggesting that i needed a TCA for my depression) my husband, who has been down this road before, leapt in--called a halt to the suggestion that depression may be a root cause of my illness) neuro organized this meeting so that i could explore the 3 week pain management seminar offer at the mayo. (more details below) for the most part the meeting was non productive-- except that she ordered some blood work and a baseline EKG. my husband asked how she determined that i was depressed. she explained that i completed a questionaire earlier (approx 20 questions) and my score reflected depression. TTT: today's tilt was deemed normal. EKG: awaiting results. stress test tomorrow--additional autonomic testing (not sure what exactly) later in the week. during the tilt (the room was cold) it went well--weak and fatigued but stood my ground to the end. then came the isuprel. not much of a response-- HR rose about 20 points-- topped at about 115 then began to trend downward. nothing noteworthy... i was not surprised as my tilts vary... however, once the table was lowered and i was supine my HR climbed to 155 and BP rapidly rose 150's/ 90's. the nurse became concerned and paged my neuro. i wound up in the recovery area --after 30 minutes BP was 90/44 HR 62. i was spent and we cancelled remaining tests. wondering what the neuro will make of this.HOME EXERCISE PROGRAM: an aside: was notified that i did not qualify for levine's study. however, mayo offered me a similar (at home) program that focuses on increasing lower body strength and development of the leg muscles. today doctor was emphatic: you must exercise and pace yourself. this is a lifelong commitment-- 5 X (45 minutes sessions) weekly. he went on to to say: this is a three prong program: hydration/electrolytes, lower extremity strength training to improve venous return, plus aerobic exercise on a recumbent bike... sat there thinking, i cannot wash my hair without going into major tachy... but i am going to embrace this program and see where it leads. there was nothing new... but perhaps i am in a different place mentally. i just feel ready to try again... will be happy to share program details as soon as i have them. PAIN REHAB: the neuro is also pushing strongly a 3 week pain rehabilitation center program. i am going to opt out of this one... want to focus on the other proposals first. additionally our insurance, more than likely, will not cover it. however, we talked with a young woman who is currently participating in the program. she is starting week 3 of the program. she was thrilled with her progress. she said that she was spending the majority of her day in bed and that pain kept her there. the program changed my life she said. she joyfully endorsed the program. her mother was visibly moved when she discussed this young woman's recent progress and healing. we met abby and her mother in the cafeteria--it was all happenstance. this lovely young stranger buoyed my spirit and inspired me. not sure what program entails--or who it is actually best suited/designed for...saw several references to it in other posts. we were told that it was suitable for individual w/ POTS and those suffering from challenges such as lightheadedness...we did not attend presentation only had recommendation from from an internist and a program instructor.anxious to see where all of this leads...wishing for each of you health and contentment,cordelia Quote Link to comment Share on other sites More sharing options...
crowebirds Posted March 30, 2011 Report Share Posted March 30, 2011 Cordelia - I am so glad that you are sharing your experiences with us as it happens. I am so nervously anticipating my daughter's trip to Mayo. We still don't have a date, but have been on the waiting list for eight months so far. While waiting for the call, my daughter has started the home exercise program. We have started with some very basic exercises. After the third trip decided that the second stage was just too much and started back in the first stage again. Basically it is just ankle and calf exercises at this point, but it has made a difference for her. She does have to exercise daily to maintain though. I never thought that it would help, but was willing to try.Please keep sharing, it helps this nervous mom.Robin Quote Link to comment Share on other sites More sharing options...
cordellia Posted March 31, 2011 Author Report Share Posted March 31, 2011 hello all,met with EP (margaret lloyd, MD) today and NP (cardiac) to review test results: stress test, EKG, holters etc...happily no structural issues. normal EKG, normal stress test. several years ago diagnosed with LVH and two years ago (at cleveland) diagnosed with diastolic dysfunction. no evidence of either yesterday. my EF was 55 at one point. measured at 67 yesterday. (assuming+/- 5%) julie, i thought of you as i sat there listening to the summary.dr. lloyd counseled me to continue CPAP. (my last sleep study was normal) she feels that CPAP is "an important aspect" of my self care --particularly in light of the previous LVH and DD diagnoses. all of my mayo testing has been "normal" with the exception of holter monitoring: HR & BP. we were fearful that because my testing looked normal for the most part--that i would be summarily dismissed; penalized for being here during a spate of good days.. she summarized by saying that the TTT is a dirty test. we can give this test to you on seven different days and get seven different results. we will treat your symptoms, not your test results. dr. lloyd, like all other providers, stressed re-conditioning. 02 sat was low during stress test. she said that this too was probably due to de-conditioning. felt that rehab would help to address this as well.neuro will be the last word. hoping for something more definitive. doubtful... but very glad to know that my heart is sound.with my best to all,~c Quote Link to comment Share on other sites More sharing options...
ken870 Posted March 31, 2011 Report Share Posted March 31, 2011 i just got back from rochester and they are going put me in the rehab program for pain also and like you i have heard great things about the rehab program i will start the three week program in july and i am looking forward to going because i am in a wheelchair now and they tell me that when i finish the program i will not need my wheelchair i will be walking instead. Quote Link to comment Share on other sites More sharing options...
ACB Posted April 1, 2011 Report Share Posted April 1, 2011 Cordelia,Thank you so much for sharing your experiences at Mayo. I just submitted a Mayo appointment request online today and look forward to hopefully getting some answers and a good treatment plan when I get there. I look forward to hearing more about your visit there as you wrap up - and to hearing all that you care to share about the reconditioning exercises they recommend!Best wishes with the rest of your visit,Alison Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 2, 2011 Report Share Posted April 2, 2011 Hi Cordelia-You must be pretty wiped out by now!!! I have to say that I am beyond impressed with the thoroughness of the testing you have received. Phew- on the heart testing. I know you've had iffy results before . Very reassuring to have a good study. I find the difference in your ejection fraction interesting. I had a similar difference from one test to the next. Was your 2nd EF after exercise or completely at rest? How were you feeling on the day with the low EF? I am very excited to learn more about your exercise rehab program. Hope you'll share it with us all. I have great hope that all of their recommendations will turn things around for you. Safe travels home. Hugs-Julie Quote Link to comment Share on other sites More sharing options...
comfortzone Posted April 2, 2011 Report Share Posted April 2, 2011 Cordelia - I hope you are feeling better - what a whirlwind of a time it's been for you. I too am really desiring a rehab exercise program - I am with Mayo but in AZ... If there is a name of the program could you share it? I wish to discuss it with my doctor - as he said essentially conditioning is my number one job - but understands with about 9 diagnosis/symptom sets going on simultaneously and EDS to boot - this will be a big challenge for me. I have chronic pain as well from the EDS SFN and various other 'itis' so common with EDS. Orthostatic intolerance and labile b/p is huge for me - so if exercise could help that - wow I would be in heaven!I will ask him if he's aware of the program you share with us - and see what we have here either in our PM&R at Mayo - or Neurology or even cardiac rehab...I am having a resurgence of tachycardia, low blood pressure and frequent palpitations lately - and noted your testing seems to be EP based...My cardiac workups were pre-Mayo - showing runs of PAT - (svt) - tachy baseline etc., but normal stress echo. I've never seen an EP or had testing beyond the basic dysautonomia screens. I wondered who takes care of 'conditioning' patients that are rather fragile with vital signs etc...and other issues like arthritis....Anyway wanted you to know you're a hero for enduring illness while going through a Mayo workup -- I'm glad it's all winding down for you... And remember you can pick up your records anytime you like - well at least in AZ I could...Be well :-) Quote Link to comment Share on other sites More sharing options...
ken870 Posted April 3, 2011 Report Share Posted April 3, 2011 Cordelia did you get into the pain rehab program if you did i hope it is in july so i can meet you and talk about our illness and we can give each other ideas on how to cope. Quote Link to comment Share on other sites More sharing options...
cordellia Posted April 3, 2011 Author Report Share Posted April 3, 2011 hello ken-- thank you for inquiring. no, i am not going to participate in the CFS/pain program. my husband and i do not thinkthat it is the best fit for me. will begin an at home program/prescription that primarily focuses on strength training, reconditioning... still waiting to talk with neuro--next week... then i will begin a the program in earnest. sorry that we will not have an opportunity to meet you, wishing you great success! with my best, ~c Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 4, 2011 Report Share Posted April 4, 2011 "she summarized by saying that the TTT is a dirty test. we can give this test to you on seven different days and get seven different results. we will treat your symptoms, not your test results." I like that! Nothing worse than having a "normal" tilt test, which probably doesn't reflect what actually happens at home and then being dismissed because of it. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 4, 2011 Report Share Posted April 4, 2011 I hope in the end, you have more answers and most importantly, a treatment plan that gives you an improvement in the quality of your life.Enduring the Mayo diagnosis system is very tiring and I hope you are stronger soon. Remember there is only one YOU and you must be gentle with yourself. best regards,tearose Quote Link to comment Share on other sites More sharing options...
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