What a bummer!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

What a bummer!

Postby javaneen » Mon Jul 27, 2009 10:03 am

Hi everyone! I just got back from a week vacation in Rhode Island and boy did I miss a lot! I have a lot of reading to do to catch up on everything. Thanks to needled (she PMed me) I have already read the preliminary reults of the liberation 100. How exciting!

So here what's going on in CT. I spoke with my Neuro and my PCP about all of this and both were interested in it. My neuro told me he would order me an MRV i just needed to check with the radiologists at Yale to see if they are able to do the scan appropriately. I gave all the info to one of the docs I work with who is friends with the head radiologist at Yale and he gave him all the articles. He basically flat out said he doesn't think that he would be able to do the scan appropriately...its too complicated and he didn't want to waist my time, my neuro's time and insurance companies money. So I am right back where I started. What makes this all harder is I am having a flair up of my symptoms. I am extremely dizzy and just got back from vacation so it would be very hard for me to take more time off of work to relax and get better. I was so hoping to come home to good news from the doc at Yale that he would be interested in helping. So I am completly bummed out. I just feel like I hit a brick wall.

Has any of you had any luck getting doctors to order the scan at home and have the results sent to Dr. Dake? What tests are they ordering? Is it really that complicated that the head radiologist at Yale can't do it? What is the best test to order? Maybe I can still convince my Neuro to order me the test. Personally, I think that this doctor at Yale thinks this is a crazy theroy and is just not interested at all in helping. I am so dissappointed. Ok I have complained enought and my head is absolutly spinning (anyone out there have advice on Meds to take during a vertigo attack?). Thanks for everyone's help and advice.
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Postby whyRwehere » Mon Jul 27, 2009 11:48 am

This is about the vertigo.
Are you sure you are not dehydrated? I suggest you drink a lot of water.
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Postby Arcee » Mon Jul 27, 2009 12:13 pm

Welcome back, and I wish the news waiting for you was better. This morning I looked at the pdf of the program for the upcoming conference in Bologna. I found it interesting that there were many attendees listed, some of whom have not been mentioned on this site, and some of whom are in the States. So maybe that is a possible place to look for someone relatively close who clearly is interested in the issue. Even if they themselves can't so the scan, they may be able to identify someone who could. Just a thought.
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Postby robbie » Mon Jul 27, 2009 12:23 pm

I think that this doctor at Yale thinks this is a crazy theroy and is just not interested at all in helping.

you got it..
Had ms for over 19 years now.
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Re: What a bummer!

Postby CureIous » Mon Jul 27, 2009 4:35 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:00 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby javaneen » Mon Jul 27, 2009 6:12 pm

So I had the wife help me do some Epley maneuvers, good grief is that tough, but guess what? Instant relief. And if it WAS MS, then there was nothing lost since the maneuvers are harmless. I was still a bit queasy from the ship moving for so long (so to speak), but my balance returned almost immediately.


Funny you mention this CurIous as I am an Audiologist who speicializes in dizziness and perform Epley Maneuvers often. I have had my collegues test me for every type of peripheral vertigo/dizziness that there is and the vertigo I am having is definitly central...and therefore most likely related to my MS

Are you sure you are not dehydrated? I suggest you drink a lot of water.


I am drinking tons of water thanks! :)

Thanks everyone for your help so far. Don't worry I am not giving up...just like Cheer I will hopefully find a doctor in the area interested in looking into this more. Its just gonna take time.
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Postby CureIous » Mon Jul 27, 2009 6:32 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 2:59 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby cheerleader » Mon Jul 27, 2009 7:00 pm

Hi Javaneen...
So sorry for the dizziness and the unresponsive doctors. Meniere's disease (an inner ear disturbance) which causes severe dizziness, is associated with problems in the internal jugular veins. In the CCSVI model, dizziness can be expected with increased venous pressure on the inner ear.

I know Lew has had some serious relief from dizziness since his stent procedure. Jeff never had bad dizziness, so I'm not sure of what to do for relief for you now. I've taken antivert for vertigo a couple of times, but I don't know if it helps with MS dizziness. Hopefully, this too shall pass.

As far as tests, Dr. Dake is looking at people's CT venous scans, if they can get them done at home, and he is consulting with folks' doctors as to how to do this. He's helped Mark and CureofBust so far- perhaps your radiologist friend could help out with this?

Keep looking for docs to read the research. I know there will be more interest after Bologna on 9/8. Hang in there!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Mon Jul 27, 2009 8:33 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 2:58 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby javaneen » Tue Jul 28, 2009 1:06 pm

As far as tests, Dr. Dake is looking at people's CT venous scans, if they can get them done at home, and he is consulting with folks' doctors as to how to do this. He's helped Mark and CureofBust so far- perhaps your radiologist friend could help out with this?


Cheer does Dr. Dake have an email I can contact him or should I call to see if he can do a phone consult with my neuro?
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Postby prof8 » Tue Jul 28, 2009 3:19 pm

Is the best way to get onto Dr. Dake's radar screen is to have your doctor (GP or neuro) call him? I left a message for Alexandra on Fri. and today but have not had a doctor call for me. I imagine they must be swamped. Any advice on the how to get noticed? Thanks for the help! This is very exciting stuff.
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Postby peekaboo » Tue Jul 28, 2009 4:10 pm

I believe Dr D is out all week....
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Postby Rokkit » Tue Jul 28, 2009 4:42 pm

peekaboo wrote:I believe Dr D is out all week....


That is correct. I spoke with Angela yesterday.

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