I am wondering if the whole procedure looms large, if the tests themselves seem daunting, or if you worry more about the outcome and dx. I can understand where any of these could loom large in your mind. Travel itself isn't always easy either.
I myself am seeking answers to my own health problems and would welcome any testing that could shed some light on what is going on. There are some on this forum who have gotten rejection letters from Mayo so I think if you have gotten in that is a good first step. IF you can figure out which part is the most daunting maybe we can help waylay your fears. Marie
My concerns are the travel ( i would go alone) , the travel expense,and some of the test. I know I will have to have them all repeated, and some are terrible as you all know. the ones I am most concerned with are the spinal tap ( and the headache I always get afterwards for ten days or so, no way I could travel back home with that headache), the nerve conductivity with and without the needles,and worst the tilt table. However, I realize that I will have to have these test repeated locally sooner or later, and so I know that it is smarter to just go and let them do what they need to do to figure this out.
And so I suppose in the end what I am really afraid of is the answer.
I see you live in Tennessee so I am wondering if you could instead go to Vanderbilt as it is closer. That might make some of this easier.
For sure this would be easier with someone with you and I am wondering if there is a way to manage this. I seem to remember someone on the forum writing about transportation allowances for health attendants and I am wondering if something applicable could apply especially in light of the problem with headache after the spinal tap.
I have only had the tilt test and nerve conductivity tests. I understand people respond differently to the tilt table. While my BP dropped to a low number I recovered quickly once brought back to horizontal. I was a bit slow for the rest of the day but then I felt normal. As far as the conductivity tests, at the time of the test I had more discomfort from the positions I lay in then the testing itself. Later tho, for at least a week or two I had increased sensitivity and zinging pains in my legs and feet. I have no idea if this is normal or not but it was about a 4 on a 1-10 pain level scale so tolerable to me.
I hope someone else speaks to the spinal tap. Are there ways to combat that headache?
As far as answers go I would rather go into anything with my eyes open to the facts. Knowledge is power. The more your know the more you can accommodate and make changes that are helpful.
I also wanted to mention that someone on the forum spoke about having some tests done at a center and others that could be done locally done locally. This saved in expenses and time spent away. Not sure if this is possible with some of your tests or not.
I do understand how daunting this seems. I hope breaking it down into pieces helps. I know that the Mayo in Minnesota lists a wide variety of accommodations across a range of prices.
I hope some of this is helpful and you get your answers. Mariei
I am going to talk to my Dr about Vanderbilt. I did some work for a nearby hospital when I was a healthcare finance consultant, so I kind of know my way around Nashville. You are right, it is about 5 hours from me and so much closer to me.I also checked and several hotels offer a medical rate for Vanderbilt patients so that will help a lot. I know that some of the larger facilities give iv caffeine which seems to help raise the pressure and therefor help the headache- The only thing that gave me any relief last time was guzzling Starbucks all day, so I think that could work if they will agree, but then I worry about my heart rate. I would gladly get a blood patch for the headache, which I have had before and it works like a charm, but of course it entails another needle in my spine....
And of course you are right about knowing what is wrong. I worry the most about my kids and how sad they wll be, I was a single mom and raised all three of my girls alone, and we are very close. Thanks everyone for letting me work through all of this here.
When we have children we always want to spare them from things but often times they show us their true mettle when things are hard. I have been impressed too with the empathy shown. I think our adult children feel blessed too that we feel we can share our difficult times as well as our triumphs. You have always been there for them and I think they may welcome the chance to reciprocate.
I hope you find a testing site that works well for you and find a way around the headache.
Let us know how things go. Marie