Michelle Sawicki

The new upgrades may help to avoid people from getting logged out as well. We'll see...

Michelle

I'm chiming in a little late, but just wanted to say "welcome" and let you know that we do hear from a fair amount of people who've developed this syndrome after an injury. One gentleman won a multi-million dollar lawsuit when he developed POTS after a car accident, which caused neck and spine injuries. As you have discovered, there isn't nearly enough research out there. Things are getting a bit better though, and we have some great physicians like doctorguest who take the time to help us out here. I know you are new to all of this, but perhaps in the future you will be one of those great physicians too.

Michelle

You might find this paper helpful:

Postural Orthostatic Tachycardia Syndrome: Dental Treatment Considerations

Michelle

There is a special way that chiari surgery must be performed if you do have EDS. Even then, there is no gaurantee that patients will improve, or that the symptoms will not return (or even worsen) with time. Please watch the video titled "Ehlers-Danlos conference" on the Chiari Institute's website.

Michelle

This ia a bit belated, but HAPPY BIRTHDAY Nina!

Michelle

Welcome home, Amy!!! We missed you.

Michelle

Hi everyone,

Amy is doing a smidge better now. She did decide to go to the rehab step down unit of the hospital. She'll be there for a few weeks. Meanwhile, the doctors are performing a bunch of tests to see why she is not doing well after the surgery. I will let Amy fill you in with all the personal details.

For those of you who ordered t-shirts in the last few weeks, Amy's husband or mom will be mailing a box of various sized t-shirts to me and I will be filling the orders. We apologize for the delay.

Michelle

Hi everyone,

I read Amy all of your get well wishes over the phone today. She says THANK YOU! She is still in the hospital, and is now considering going to the rehab step down unit. She will probably be there for a couple weeks. Right now they are trying to help her walk with a walker. They are hoping she will improve to a cane. Amy says she will have to paint flames on her cane to at least pretend she is moving fast.

Please keep her in your thoughts and prayers. This last surgery really hit her hard.

Michelle

I talked to Amy again this evening. They are keeping her in the hospital because her blood pressure is very low, and she is fainting on a regualr basis. Her doctor suggested a rehab type step down unit or 24 hr home care. I think Amy is going to go with the 24 hr home care.

The good news is that Amy is not having any problems with her new central line.

Thank you to everyone who has posted get well wishes and will be sending cards.

-Michelle

Hi guys,

I just got off the phone with Amy. She is still in the hospital, and she will probably be there for at least another day. She is experiencing some hefty POTS symptoms and is passing out almost every time she gets up. The doctors also think she might have had an infection in her line. The good news is that she has not had any allergic or other reactions to her new central line. We're hoping she can keep this one. I can't even remember how many times she has had problems with lines....way too many times. Please keep her in your thoughts and prayers.

Michelle

Very interesting. Thanks for posting.

-Michelle

Hi everyone,

Amy just had another surgery. If you'd like to send her cards, you can send them to DINET. I will forward them to her. Our address is:

DINET

PO Box 55

Brooklyn, MI 49230

Thanks,

Michelle

Here's my biggest, baddest thing...(hehe!)

About a year ago my allergies really started acting up. Now we all know allergies can make POTS worse because an allergic reaction leads to histamine release, which leads to vasodilation...blah, blah, blah. Well, I went to my allergist and found out I'm allergic to canaries. This probably wouldn't be a problem for most people, but I am a bird lover from way back and am an avid breeder of canaries. Nothing is cuter then the first fuzzy little heads that pop out of the nests in spring.

My allergist told me I should find homes for the canaries. I agreed....but one week turned into two and two turned into three and I just coudn't part with my little feathered friends. Worse yet, when spring rolled around I paired them up and let them have babies. So now I have even more canaries. Oops.

I take my meds, drink tons of water and try not to overdo it, but those cute little birds are my weakness. I just can't bring myself to part with them.

-Michelle

Vacuuming does me in too. I've wondered if vacuuming somehow results in compression that decreases the return blood supply to the heart.

We got rid of our carpet and put in hardwood floors a couple years ago. I've used a shop vac since then, and it doesn't give me any problems. I breed canaries and have 3 furry dogs, so I have to at least vacuum around the bird cages almost every day.

My sister has a cleaner thingy that hangs in her shower (wish I could remember the name!). She pushes a button and it sprays down the shower. She says it really works. I've been thinking of getting one. Cleaning the shower is hard for me too.

Michelle

Hi,

The original design had a nice contrasting blue/green scheme, and it was designed by one of our members and voted on by all of our forum members who wanted to participate in the vote. While not significant, I, like you, noticed that a small percentage of the original contrast was lost in printing. That happens sometimes.

Michelle

Amy's husband called and said she made it through surgery okay. Yay! Amy is one tough cookie and has gone through w-a-y too much lately.

Michelle

Hi everyone,

This is just a reminder to include your first and last name, email address, and state when submitting questions for the doctor Q&A section of our newsletter. So far we have received two questions without this information. One question was about mitochondrial disease and the other was about pigmentation and lactation. If one of these questions was yours, please re-submit it with your name, email address, and state. We have no way of contacting you without this information.

Thank you,

Michelle

Thanks for updating us, Emily. I haven't heard from Melissa's family or from her, and I have been wondering how she has been doing. I've been thinking of her.

-Michelle

Thanks so much for posting this, Doctorguest! I get a lot of questions about medical research, both at DINET and working in reference at a library. This will definitely help me to help my patrons better evaluate the articles they read.

-Michelle

Hi guys!

Here is a new Mayo Clinic Podcast on POTS. The focus is on children and teens with POTS, but I think everyone may learn something.

http://www.digitalpodcast.com/detail.php?id=17188

-Michelle

Hi Amy,

I am okay with your using the quotes, but you need to contact and get the okay from each individual before using their work. That is copyright law. If you can't get in touch with the people then legally you shouldn't use their work. If you want to learn more about copyright law you can do so here:

http://www.nolo.com/resource.cfm/catID/DAE...1F7513/310/276/

Michelle

Yay! That is great to hear! Kudos to you, Doctorguest! You're fantastic!

-Michelle

Hi everyone,

If you've read Nina's latest post, you know she was having some complications after her breast reduction surgery. It turns out she had a blood clot and had to have another surgery today. She got through the second surgery okay and even managed to joke on the phone with me that she wanted to make them smaller, not bigger. If all goes well, she'll be able to go home this evening.

Michelle

Hi guys!

I just wanted to let you know that Shannon has uploaded the newsclip about the documentary to youtube at:

Michelle

My muscles get sore very easily and there is not a day that one of them isn't hurting. Simple things like cleaning or gardening leave me sore, sore, sore.

Michelle