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I'm In Bltimore For The Eds Conference


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The thing is that I had to have another CT scan. HE said the films I had were not the best quality.

He ordered another CT scan. I'm concerned because I've had about 6 in the last two years----the last one being a few months ago.

He didn;t seem overly concerned. I think they are much more advanced in Baltimore, as he mentioned a completely different view-----FRANKLY IT MADE SO MUCH SENSE TO ME, BUT OBVIOUSLY THEY DON'T GET IN WHERE I LIVE, OR A FEW OTHER PLACES I WENT TO. The orthopedic surgeon I sae in another city did a 3D CT scan with me turning my head to the left and right. This did show significant instability, but my PCP wanted me to have another opinion------someone familiar with EDS.

I feel TERRIBLE right now. I had to do flexation and extention view----and they don't mess around.....they flexed my head way back. I'm just sick.....so dang sick. Riding the beltway from Baltimore to Bethesda isn't fun-----they're crazy drivers!

My head and neck are throbbing----even with my tylenol. It's upsetting my stomach.

Praying for this to pass ASAP.

Maxine :0)

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I'm praying that you feel better quickly and that the new neuro surgeon Is able to help you.

I'm leaving for Baltimore about 1pm tomorrow.

Hang in there. See you soon!


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See you there!

Today we went back to the NSG. He said I have issues, but wanted me to do a sitting MRI in town, and some kind of urine dynamics testing.

We were able to find a sitting MRI facility half way between Bathesda and Baltimore. It was pretty interesting.

I hated going back on the beltway......... :o It worked out pretty well, as the MRI was right on the way back.

I don't know what the NSG is going to do, but he's pretty intense with deep thought. He reminds me of my brother James, who speaks very little, but always has an intense look of deep thought on his face. I liked him.

Anyway, heading down to the conference on the 5th floor. They have small mall in here we're going to check out on the same floor--- :)

We have a view of the habor from our room. There's also a skyway you can walk across from the 5th floor. We're on the Ninth floor.

Looking forward to meeting you!

Maxine :0)

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Sorry for the delay in responding, and Thank you so much for your support! :)

The conference was fantastic! I'm still trying to take it all in, and remember everything I learned. I'm also trying to remember all the people I met. It's overwhelming in a GOOD way. I'm hoping I don't offend anyone who's name I don't remember. MY husband was great at finding people that I have been in touch with, as I was so wiped out from going to see the neurosurgeon, and that CT scan I did with flexation and extension. The MRI wasn't bad, as I didn't have to extend my head back as far. On Wednesday night I really didn't think I was going to make it. I thought this was it! My head never hurt that bad.

I posted a list of the previous speakers on another thread, but here's the link again;


I learned so much about cervical cranial abnormalities related to EDS, and other spinal deformities of the spine. I was so involved in meeting new people with problems just like mine, or people who have had so many problems that I was stunned on how much ignorance is still out there. With 500 + people showing up to the conference, I find it amazing that so many had the same stories, and the physicians were telling the same stories of dismissal and ignorance by the medical community. I can't wait for the DVD, and handouts of the presentations so I can review the information. It's hard to remember everything presented. There were a lot of people there who had POTS secondary to their EDS. The courage to the people who had vascular EDS was amazing. One woman had 5 stints put in her for dissected arteries!

I met people with scooters, canes, seat canes, wheel chairs, and walkers. I saw people with ring splints. I even tried a ring splint on my middle finger myself. It didn't seem comfortable so I returned it. However, when we were packing to leave, I twisted my index finger, and now I know the purpose to the ring splints. I do this all the time, and it just became part of "my normal". I will be looking back into the ring splints again..... ;)


There were venders there selling the ring splints, and various other things----even "klogs"

http://www.klogs.com/whyKlogs.cfm#leather I bought a pair, and love them!

I bought Dr. Tinkle's book ----------- http://www.amazon.com/Hypermobility-Handbo...X/ref=pd_cp_b_2


I wasn't surprised to find that many people thought thier POTS to be more disabling then the EDS. I'm not saying the EDS isn't disabling, but the secondary problems to EDS can be extensive. Dealing with relentless blood pooling due to stretchey veins is difficult to treat, even with vasoconstrictors, so many of us just have to do the best we can, as the drugs don't always have the full desired effect.

To be truthful, I'm having trouble remembering the vascular, pain, and digestive problem presentations----as I said, I'll be wating for the conference DVD, and any handouts offered. The conference fee was $500.00 for my husband and I, and we stayed five nights in the hotel. We signed up early, so the registration fee went up later. Thank God my husband was finding people I had been in contact with----I was just so out of it....

Regarding the surgeon......... I saw him after both tests were done---the CT, and the sitting MRI. As he said on the second visit after the CT was taken----my brain stem had issues.... <_< I'm not sure what, and this is why he wanted an MRI done. I saw him on Saturday at the conference, but we only talked briefly, as he had to leave to do a brain surgery. He said I had an angulation problem near the brain stem, and that he needed me to see him again (we only had a few moments alone). He needed more time to review the films, to see what else might be going on. We discussed the vertebral artery missing on the left on the first appt. He said it can be a normal varient. I told him there's blood flow showing in the left vertebral artery in my neck by ultrasound. However, MRAs show no vertebral artery visable, so I aksed if this could be affected by the instability? I think this is another reason he would like to evaluate the films further. He is very professional, and I liked him very much.

He didn't like the quality of the films I brought with me. Basically, IN MY OPINION, where I live is considerably behind in the latest medical technology and research. They are totally lost on EDS around here, and have no clue on how serious it is.

I joined Facebook and made many friends from the EDS group. I wasn't the FB kind of person, as I'm more into using my computer for support and research. However, this has changed, and now I'm addicted!----lol. (I get a lot of support on facebook--- ;) ) My husband likes the games on FB, but so far I haven't played any of them. No farmville for me----lol.

The neurosurgeon will send me his dictation report on what he has so far, and we will set up another appointment.

Right now I'm catching up on rest, and trying to get my guts back on track. My nerves are a bit shot also, and I'm trying to get those in a better place also.

Ahhhh, what it would be like to feel normal..... What is that?

Maxine :0)

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Glad you survived. Sounds like you've learned allot and now all you need to do is share it with us all.

The shoes look really comfortable. I don't think I'd like the rings. They look like they'd really bug you. Unless you really have allot of issues with your fingers, it's probably better to try to keep them mobile, so they won't freeze up on you.

Did you find the book to be a good read? Does it give allot of good advice?

Hope your doctor can find some answers for you and get you some relief!!!!

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We have pictures.... We had a good time-----even with having to drive to Bethesda twice.

We stayed up late every night talking with people we met. It was pretty amazing!

If anyone is interested in seeing photos from the conference, I have pictures in Face Book. You'll have to send me a PM.

We should have had someone take a picture of us. I don't like taking pictures----if you see any other pictures of me, I'm usually hiding my neck.

MY neck makes me look bigger then I am. I'm not that big-----pretty average, after being VERY thin for years. Wellbutrin can pack on weight... <_<

I have pictures of the speakers, the view from our room, the mall inside the hotel, and some of the people we met.

Maxine :0)

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Maxine, you are very strong and brave. I can't even begin to imagine the discomfort and pain you endured with the CT and the extension and flexation movements you went through. It's like you went through great agony so all of us could learn from your problem and experience.

Even the slightest 'wrong' movement of my neck/head causes me so much grief. I pray that now you will get the help you need to make things better for yorself. Your husband sounds like one terrific guy! God Bless you both.

Mary p

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Thanks Mary P.,

I appreciate your support and understanding. I'm still paying for it, but getting by.

I've been trying to catch up on sleep, as I didn't sleep well at the hotel, but better then I thought I would.

We're just waiting to hear back from the neurosurgeon's office. I should call Dr. Grubb's office due to having worsening of POTs symptoms. I have a feeling the trip was a bit overstimulating for me, so hopefully things will calm a bit in that dept. I still don't understand why I feel like I'm smelling smoke----it feels like I'm smothering sometimes. I try to keep calm....but it's hard when this happens. My lungs are clear----it's so strange.

I will certainly keep you posted on what the doc has to say. I'm definately having a rough time since the CT was taken, and feel dizzy and out of it.

Maxine :0) My pictures are in facebook.

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Hi Maxine,

I too am having a difficult time recovering from the travel and time spent at the conference and I was only there one day!! I actually spent this afternoon in the ER getting an IV as I was feeling so badly. I think its just going to take us awhile to recover.

It was nice meeting up with you. I actually didn't meet up with anyone else from DINET while there but I would have liked to.

Hang in there and I hope you here from the NS soon and also that you start feeling better.


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It was so nice meeting you too! Isn't it crazy how much we become affected by traveling? Shouldn't we be able to enjoy traveling like anyone else? I'm sorry you ended up in the ER with an IV.

I hope the IV was helpful in making you feel better.

I think I met a couple people from DINET, or maybe it was people who had POTS. It was so overwhelming meeting so many people, it's difficult to remember everyone. <_<

The hotel was pretty amazing!

Take care of yourself-------- flowers.jpg

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Maxine, I'm cracking up about your commentary regarding crazy driving... you just got a small taste of how crazy it can be. Head up to NJ if you want to see ultimate crazy driving; your first test would be navigating traffic circles, which on the way to the shore, I pass several. In fact, before my dad let me drive unaccompanied, he made me drive from our home to my grandparents and back, which went through no fewer than 6 traffic circles--and these aren't little small town circles, these are in the middle of 2 or more highways. Add the fast driving to the failure of many NJ natives to yield to other vehicles and you get a white knuckle thrill ride. You can get a close approximation if you rent a car at Newark airport and then try to find your way to your destination while other drivers whiz past you, tailgate, honk, and give you the local hand signals to welcome you to our area of the country (I never feel at home until I've gotten at least one bird flashed my way).


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LOL----We've been in NJ traffic on the way to Long Island. It was like being in a video game gone horribly wrong-----meaning were were in it! 80-90mph bumper to bumper.

I remember coming home one day over 10 years ago after a couple margaritas, and my son and his friend were playing one of those video games with cars driving in it. I tried it just for fun, and crashed into everything----I tried it with no drinks in me----I crashed into everything...lol. I felt like this in NJ, like we were going to lose control.

The yield thing was the same in MD. It's not POTS friendly for sure!

Maxine :0)

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Welcome to my everyday driving world! I am used to driving here, so when I go to other parts of the country, I feel like everything is going in slow motion. The only thing that rivaled the skill need to drive in NJ and NYC is when I drove through the mountain/cliff highways in Croatia. Holy smokes. They do those darned steep switchbacks and curves at high speed. At least then, I didn't understand the curses they were screaming at me! Now I might "get it" because I actually speak enough to get by. Hoping to go there for a kayaking vacation next summer... a girl can dream (I don't have any $ currently... okay, that's an understatement)

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