Question about MRI findings.

[Mom2Ava]

I posted a while back about an upcoming MRI.
I have Ehlers Danlos and often have uncomfortable feelings in the back of my neck. Sometimes I feel nausea in the back of my neck, sometimes pain. Sometimes I hear a squishy sound.
My PCP wanted to do an MRI to r/o aneurysm ... I wanted an MRI to r/o chiari.
I just got a copy of the disk today ... it says nothing about chiari and nothing about my original complaints of pain and nausea in the back of my neck ... it just says eye pressure and pain ... which I get that too.
Anyway, the only abnormal findings were " Basilar apex is somewhat bulbous"
Anyone know what this means?
Now the MRI was hell. The tech was having trouble the entire time and said many images were blurry ... but it had to do with the machine .. I was perfeclty still.
She had to keep redoing the images.
This particular hospital ... I have very little faith in ...
Is it possible to have someone else read the MRI?

[ChrisC]

Your findings could be due to anything - your best bet is to get your doc to prescribe another one and have it done somewhere else, unless you don't have that option. Another specialist reading it would also be a good idea if you can't get another one. That stinks too, because MRI's are a pain, and LOUD!!!! Hope it turns out well for you.......

[Lifelines Dallas]

Hi. I'm sorry you haven't had many replies. That must be frustrating. My name is Kimberly, and I, too have Ehlers Danlos. I had a ruptured brain aneurysm 7 years ago. My post is on the first page "Is Happy to be Alive Good Enough?"

Have you googled basilar artery+bulbous? I just did a quick search and came up with many hits, and some of them mention aneurysm, so if I were you, I would have another MRI. Actually, a MRA might be of more use - so see if you can get both. Also ask for a specialist who is familiar wth EDS.

Do you know about the National Ehlers Danlos Foundation's web site?

Having said all this, you do know that surgery isn't recommended for people with Ehlers Danlos, right? I had severe life threatening complications because my EDS was undiagnosed at the time of my rupture.

[Mom2Ava]

Hi Kimberly ... fellow EDSer

I met with Dr Nazli a couple of weeks ago. she looked at my MRI and recommended I have a f/u in terms of that bulbous vessel. She also said she is going to have someone else look at it. I am not sure who to f/u w/ though. Don't really trust many of the docs up here ... or at least do not trust the main hospital.
Maybe I will ask my daughters epi.
I also probably have chiari.

Yeah I know about surgery risks and so forth. Actually was a reason for me to see r Nazli .. I suspect my daughter has EDS as well and her ENT was recommended they take her tonsils out. EEK!
My daughter had a stroke.

So was your aneurysm related to EDS? Are you CEDS?

[Lifelines Dallas]

Hi. I'm new to EDS so I don't know what CEDS is. I have hypermobility and possible vascular due to the aneurysm already rupturing. Are you referring to Dr. Nazli McDonnell? If so, you are in good hands! She's the lead investigator of the clinical trial. http://clinicaltrials.gov/show/NCT00270686

I contacted the office, received the clinical trial sign up and treatment protocol. Instead of signing up for the waiting list, I took the list of blood tests ordered for the study to my geneticist and she ordered all the tests. The most significant thing I discovered was that I was severely deficient in Vitamin D 25 OH (it was 18). I started tanning at the beginning of February and by July had my Vitamin D 25 OH up to 44. I also notice that my good health (lack of muscular pain) depends on whether or not I keep my Vitamin D up. I can't take supplements, so I do my best to get 15 minutes of sun or tan each day.

I'm sorry to hear of your daughter's stroke. Did that happen because of the surgery?

And I hope not to embarrass or offend you by my next question, and if you want to reply privately, my email is lifelinesbi@sbcglobal.net - do you and your daughter have any gynecological complications because of the EDS? I'm having problems because the stroke "messed" up my urinary wiring - no urge to urinate but because of the EDS, my bladder just keeps expanding (800 ml+). It took me 6 years to figure out that the brain fog I was getting was just my brain trying to tell me I had to use the restroom. I also keep getting UTIs - and have had them all my life.

Do you have anything like that going on?

Thank you,

Kimberly

[Mom2Ava]

Hey Kimberly ... my dd and I went down for part of that study.

CEDS is classical EDS ... HEDS is hypermoility ... VEDs well you get the idea.

Who DXed you?
I think aneurysms can also go along w/ CEDS ... but I am still learning about this.
So does chiari. Do you have this as well?

My daughters stroke happened around the time of birth. I had a very difficult preg. Partial abruption at 28 weeks. She was vulnerble. We do not know the exact cause ... but I think where I had gestational hypertention, the aburption ( that clearly effected her growth ... the placenta was inssufficiant) and three days of being on pitocin and her have lots of decles for those hree days ... she just couldn't handle it. We finally did a c/s.

do you and your daughter have any gynecological complications because of the EDS?

YEP ... or at least I do and I wonder about Ava.
I have always had UTIs as well ... or so I was told. Turned out I had intersticial cyctitis. A chronic inflammation of the bladder. Only some of the time I had true UTIs ... but it was more so that I was prone due to this inflammtion I had.



Do you have the autonomic dysfunction?

[Lifelines Dallas]

You are helping me so much! I've never heard of autonomic dysfunction, so I just googled it. Yes, I would say that this describes many of the problems I am having. Do you have it and what are you doing to manage?

I think, without knowing it, I discovered a way to help the dysfunction. As I got my memory back from the aneurysm rupture (this took 7 years to get to, with acupucture and neurofeedback), I was able to realize that I have sensory integration problems. As it turns out, SI issues are common in people with connective tissue disorders. So I googled sensory integration and found different therapies people have tried for their children (usually autistic). I've been recently diagnosed with severe vestibular and proprioceptive issues. I started the Tomatis therapy in August and just 15 hours has completely changed my life. My reason for mentioning this is because it could be your nausea is coming from vestibular disturbances - and Tomatis or an occupational therapist specializing in SI issues could help you. Try www.tomatis.com.

I have a geneticist here in Dallas. Angela Scheurele and she's the best in town! I actually figured out that I might have EDS based on my aneurysm and physical history and went to her for a diagnosis. This was 6 years after the rupture. I said, please tell me that I'm wrong - but after reviewing my case and physical exam she said, You're right. The EDS runs on my mother's side of the family - multiple members have died of aneurysm rupture and my aunts have had multiple aneurysms.

Any information you could provide on EDS would be much appreciated!

How is your daughter's quality of life? Would you like to know about some therapies that might help it improve?

Kimberly

[Mom2Ava]

I have many of the autonomic dysfunction issues. I have the orthostatic hypotension, orthstatic tachycardia, delayed motility in stomach, bladder and bowel stuff.
Ava has funny pupil stuff, odd skin color changes, intense heat intolerance I suspect some bowel and GI stuff.

I have found certain things make it worse ... meds, too much sugar and so forth.

Ava is on a dietary treatment for epilpsy. The diet seems to help some of her quirky issues.

About the SI stuff ... of yes. I have always had some pretty significant SI issues. Ava does to but hers are a little different. She has SOME auditory defensiveness, but much of her senstivities are HYPO not hyper. SO she craves lots of hard core activities ... crashing ... even to the floor, spinning, climbing ... oral stuff she chews the bejesus out of things she shouldnt be.

I have several years experience working with children & adults w/ autism so I have learned quite a bit of SI issues. Years ago went to conference and there was a speaker there talkig about the Tomatis method. I have a little bit of experience with auditory integration training. Have also read a few books on this.

I do think chiari malformation can cause a lot of these issues. This is pretty significant with EDSers. have you visited the Chiari institue site? Has lots of good informative videos including one from the EDS conference.
here is a link:
http://www.northshorelij.com/body.cf...6&PLinkID=6407
Dr Nazli is in the last part of the video.
They talk about the link between chiair & EDS. Chiari really seems to explains a lot in terms of some of the quirky health issues we have.

Have you joined the EDSERS yahoo group? They are a very informative group of people.

Have you emailed Dr Nazli directly? I would. I was worried about VEDS because my mothers mom had a bowel rupture during pregnancy then died years later due to surgery complications. A couple of days after she died, my moms brother died suddenly and unexpectedly in his 40s. Never knew the real cause.

Ava's quality of life is great!!!!!
We travel to Boston for most of her specialty care. We see a wondeful epi at MGH ... the best. We go to Spaulding Rehab for physiatry and OT. Spaulding is certainly the best rehab in New England I think. Our OT is awesome. She really understand SID and how it relates to stroke.

I was trained in ABA therapy years ago. We applied this method w/ stroke pts at a rehab I used to work at ( it is basically just repetetive excersizes).
I have been doing this wiht Ava for a while now. I ditched our EI.
We set up a nice sensory motor room for Ava. Our OT gives us lots of good ideas.
My daughter also does does riding therapy every week.

I think we are starting to get a little off topic in terms of aneurysms. Hope at least some of the info might be helpful to others.

I will PM you my email address. ( I don't post it publicy anymore ... last year there was a creepy here sending parents of little girls creepy emails)

One last questions, did you get the info packet with DVD from the National Ehlers Danlos Foundation? Lots of very useful info there.

[Nippet]

I have Arnold Chiari malformation and four aneurysms, all but one aneurysm have been treated including the chiari. It was a follow up MRI for scar tissue monitoring from the chiari surgery when the first aneurysm was found. The chiari surgery was in 1988 and the first coiling for aneurysm was in 2001 and then three others within the past 18 months. I have one sacular aneurysm the others are dissecting.

[Mom2Ava]

Nippet, is there a correlation between the Chiair & aneurysms?