Shimoda Posted December 2, 2008 Report Share Posted December 2, 2008 Hey...I'm new here. My name is Seth and I'm 17. Unfortunately, for my senior year, I'm not supposed to have any fun. I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) this past August. I have a terrible onslaught of symptoms that first occured after shoulder surgery in summer of 07. As of a week ago they believe I might have Arnold-Chiari Malformation of the brain stem as well.... I have pre-syncope and syncope symptoms countless times a day. I have non-stop visual snow which doesnt stop even when I close my eyes, so I can't go out in the dark or light. My blood pools heavily in my sleep and sometimes whilst awake. My head hurts all the time and I often have trouble breathing and moving. I am just so dreadfully tired all the time - I have quit all my extracurricular activites and have stopped playing hockey. I'm very out of it most of the day, and really am just sort of existing at this point. All I know is that I've been dealing with this for far too long...16/17 months at this point. I thought at first it was just me feeling badly after a surgery, but it has progressed to the point where I can't do anything. Sorry for the pity party but this blows.Any input would be helpful. : ) Quote Link to comment Share on other sites More sharing options...
dsdmom Posted December 2, 2008 Report Share Posted December 2, 2008 Hi Seth,I'm sorry to hear about all the problems you have been having. And you're right - it definitely blows!! Are you being treated by a POTS specialist? Hopefully things will improve for you over the next few years...but again, I am so sorry that you are missing out on your senior year and all the activities you enjoy.Hang in there - and we'll all be here to support you. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 2, 2008 Report Share Posted December 2, 2008 Most patients improve over time. When i say improve i dont mean that it goes into complete remission, but it tends to ebb and flow a bit. I had a bad boute that lasted for a year and a bit but then it improved to some degree and now i generally only get the occasional bad boute. Quote Link to comment Share on other sites More sharing options...
pat57 Posted December 2, 2008 Report Share Posted December 2, 2008 Drs. do say the prognosis is best for teenagers. Prognosis. As best we know, adolescents with POTS usually do well and return to a fully productive life. It seems that about 80% recover completely. Optimism is appropriate!http://podcasts.mayoclinic.org/2008/04/23/...-syndrome-pots/podcasthttp://mcpodcasts.files.wordpress.com/2008...ots-fischer.mp3 Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted December 2, 2008 Report Share Posted December 2, 2008 Hey Seth,Are they doing anything about the Chiari? Is it bad enough to warrant treatment?Angela Quote Link to comment Share on other sites More sharing options...
momofsara Posted December 2, 2008 Report Share Posted December 2, 2008 Hi Seth, welcome to the forum. I'm so sorry you are having these problems and I do know it is depressing. And you are allowed the occasionaly pity party, as long as it doesnt become permanent. The up side is that the POTS usually gets better for folks as young as you. Have you seen a neurosurgeon? Sara's Chiari Malformation was diagnosed with something they called a small slice MRI. According to the teaching hospital we took her to, not every hospital has the capability of doing one of those. I am hoping the best for you, and hoping you get a really caring and competent doctor. Keep us posted, we care about each other on this forum. Try to keep your spirits up and come here often for some good wishes..... Best to you........ Susan Quote Link to comment Share on other sites More sharing options...
Shimoda Posted December 2, 2008 Author Report Share Posted December 2, 2008 Thank you for all the support. It's nice to have other people to talk to who are going through the same crap that I am. Glad I found this site. : )It's also pretty cool to know that 80% get better - thats definitely good news. It would be nice if I didn't have to deal with this for the rest of my days.Angela, I had a brain MRI this Saturday. Hopefully they come back negative, but we'll see. I should get the results tomorrow (Wednesday). Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 3, 2008 Report Share Posted December 3, 2008 Hi Seth,I'm the Mom of a 16 y/o boy with the same DX. Mack's gotten much better- not perfect- with a good treatment plan. He just rode his bike 100 miles (lots of uphill) on Thanksgiving (over 2 days.) Initially, he was totally sidelined too. With the right regimen/treatment you can show great improvement. This is especially true for teens.Out of curiousity, did you grow alot prior to being stricken? My son grew 6 inches the year he became sick. Welcome!Julie Quote Link to comment Share on other sites More sharing options...
Shimoda Posted December 3, 2008 Author Report Share Posted December 3, 2008 Out of curiousity, did you grow alot prior to being stricken? My son grew 6 inches the year he became sick.Umm...now that you mention it, yeah, I was like 5'6" and went up to 5'11" or so...maybe hormone changes make one more succeptable. Quote Link to comment Share on other sites More sharing options...
MelissaCrystal Posted December 3, 2008 Report Share Posted December 3, 2008 I hope that it'll be corrected soon! People with Chiari malformations very often recover completely, so I hope you will be one of those people! I'm sorry that it puts a damper on your teenage years though =/ I hope your MRI results show your doctors what needs to be done, for the sake of having something to correct! And if your MRI is clean, I hope that it'll just take some time for your nervous system to correct itself! There a lot of tips on these forums to living better with POTS, I really hope you're able to find solutions =) Quote Link to comment Share on other sites More sharing options...
pat57 Posted December 3, 2008 Report Share Posted December 3, 2008 Shimoda ,that podcast is about teens with POTS -Mayo Drs.- check it out. Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 3, 2008 Report Share Posted December 3, 2008 Hey Seth,That huge growth spurt really makes you succeptible...not sure why. My son's 6' 1" now and he's definately stabilized with height and his symptoms have stabilized too. He takes a bunch of meds and needs a lot more sleep than his peers, but he is able to attend school again. The trauma of your surgery, coupled with your growth spurt probably set off your dysautonomia. Out of curiousity, have you ever hurt your neck or did it get hurt during your surgery? Julie Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted December 4, 2008 Report Share Posted December 4, 2008 Hello SethHang in there as it will get better! My son#2 who was the local high school team goalie and also ran on the cross county team came down with POTS in his senior year. He started out strong in the first quarter but barely got thru the remainder of the first year at college due to his POTS. He took the summer off and rested and recouperated and then return to college, and it has been a very long path to recovery for him. He is in his senior year at college now and playing a little catch up with his class schedule in order to graduate this next spring. Ok! he is not fully recovered but he is nearly back to normal so as long as he takes his meds, drinks his fluids and gets the occasional nap worked into his schedule.DADofPotsSon Quote Link to comment Share on other sites More sharing options...
Shimoda Posted December 4, 2008 Author Report Share Posted December 4, 2008 Thanks again everyone. I'm kind of irritated because the doc didnt call me with the results. Still waiting... Quote Link to comment Share on other sites More sharing options...
Shimoda Posted December 5, 2008 Author Report Share Posted December 5, 2008 Just an update...the MRI results came back clean, so thankfully I don't have Chiari. I really have no idea where we go from here. My docs are reluctant to give me any sort of meds so I don't know where that leaves me. Apparently, I'm just supposed to will it away. Prayers, anyone? Quote Link to comment Share on other sites More sharing options...
firewatcher Posted December 5, 2008 Report Share Posted December 5, 2008 Just an update...the MRI results came back clean, so thankfully I don't have Chiari. I really have no idea where we go from here. My docs are reluctant to give me any sort of meds so I don't know where that leaves me. Apparently, I'm just supposed to will it away. Prayers, anyone?Seth,Get some compression/biking shorts and wear them all the time. Salt and water...get up slowly...Print out the FAQ page of this website and give it to your doctor and ask, "OK, what ARE we going to try FIRST?"Good luck, at least they dxed you early. When I was a teenager, everyone just told me I was out of shape and lazy. Quote Link to comment Share on other sites More sharing options...
ladyt Posted December 5, 2008 Report Share Posted December 5, 2008 hi..=)Hope u are in the 80%... Quote Link to comment Share on other sites More sharing options...
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