Search found 19 matches

by SophieandElle
Wed Aug 05, 2015 6:27 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1761640

Re: DrSclafani answers some questions

Hi!

I have had moooreee testing and found today that my SVC on the R is refluxing and they are both "VERY small" according to the IR. He did not seem overly concerned but said that it could be causing some of my symptoms. He did not suggest treatment on this. What to do?
by SophieandElle
Wed Aug 05, 2015 6:24 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Testing??
Replies: 7
Views: 1626

Re: Testing??

Thank you for replying!

Learned I have SVC reflux. What is the significance? What are treatments?
by SophieandElle
Fri Jun 26, 2015 9:49 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1761640

Re: DrSclafani answers some questions

Hi Dr. S -

I emailed you but am not sure if you have received it yet.

Do you normally treat refluxing IVJ's?

What about refluxing from a chest vein (axillary + lateral thoracic)? Is this something we could treat? Symptoms are debilitating - ultrasounds prove the reflux....need help very very much!
by SophieandElle
Thu Jun 25, 2015 3:56 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Reflux question
Replies: 1
Views: 984

Reflux question

Hi Dr. S - I emailed you but am not sure if you have received it yet. Do you normally treat refluxing IVJ's? What about refluxing from a chest vein (axillary + lateral thoracic)? Is this something we could treat? Symptoms are debilitating - ultrasounds prove the reflux....need help very very much!
by SophieandElle
Sat Nov 29, 2014 7:20 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Testing??
Replies: 7
Views: 1626

Re: Testing??

Thanks for the replies! The reason I inquire about int. mammary and axillary: months before I became fully symptomatic, I noticed blue veins along my chest, through my armpits, down my rib cage. I thought it was really odd - no way was I pregnant or anything like that. It went along with breast pain...
by SophieandElle
Tue Nov 25, 2014 10:02 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Testing??
Replies: 7
Views: 1626

Testing??

Hi, for those who have been tested: --If the IR finds stenoses in multiple veins will they all be treated??? (ie. subclavian, axillary, internal mammary...) not just IJV being treated. --Will the IR look at other veins besides the usual suspects? --If you were able to get insurance to help you with ...
by SophieandElle
Sat Nov 22, 2014 11:44 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1761640

Re: DrSclafani answers some questions

Hi Dr. S,

What does it mean if your IR says that your IJV narrowing is too dangerous to mess with? Mine is right at C1. I am a bit disappointed hearing this after the test. Do you ever find them too dangerous to try to fix?
by SophieandElle
Sat Oct 18, 2014 7:03 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Questions - help!
Replies: 2
Views: 1090

Questions - help!

Do any of you feel a pain in the front or sides of your neck? What the heck is that?! Have you ever noticed that your symptoms are posture related? Any time I have to lean forward, especially w/arms out, symptoms flare afterward. This is: driving, pushing stroller, working on computer. What does thi...
by SophieandElle
Sat Oct 18, 2014 6:59 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: why Als lack of interest with that they have ccsvi ..!!
Replies: 31
Views: 7028

Re: why Als lack of interest with that they have ccsvi ..!

What about when we are getting worse everyday? I know caution is important, but sometimes fear gets the best of me. I am having a scalenectomy, pec minor release and subclavius muscle removal in December for TOS....
by SophieandElle
Fri Oct 17, 2014 12:11 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: why Als lack of interest with that they have ccsvi ..!!
Replies: 31
Views: 7028

Re: why Als lack of interest with that they have ccsvi ..!

You guys,

I believe Thoracic Outlet Syndrome causes/contributes to ALS. Why so many athletes, musicians get this + MS?? Imagine the neck/arm muscles constantly being used. I know this is it. Same for Parkinsons's.
by SophieandElle
Wed Oct 15, 2014 4:06 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Muscle compression?
Replies: 2
Views: 1031

Re: Muscle compression?

Has anyone on here had to do any of the things you mentioned?
by SophieandElle
Wed Oct 15, 2014 3:16 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Muscle compression?
Replies: 2
Views: 1031

Muscle compression?

Hi--

If one is found to have IVJ compressed by sternocleidomastoid or some other muscle, then what??? Is there a procedure to divide this muscle? Should be.
by SophieandElle
Tue Oct 14, 2014 4:49 pm
Forum: Parenting Kids With MS
Topic: My 7 year old son has MS
Replies: 10
Views: 20790

Re: My 7 year old son has MS

Have you tried hyperbaric oxygen?
by SophieandElle
Sat Oct 11, 2014 6:28 pm
Forum: Undiagnosed
Topic: Please tell me what you think about my symptoms
Replies: 35
Views: 13283

Re: Please tell me what you think about my symptoms

Jewels,

Your symptoms...you have/had thoracic outlet syndrome.
by SophieandElle
Sun Aug 03, 2014 9:42 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CTOS/CTNVS/CCSVI/PPMS
Replies: 1
Views: 1286

CTOS/CTNVS/CCSVI/PPMS

Here we go: I am 29, a (former) runner, exercise fanatic, new Mom (she's 11 months), and a teacher. About 8 months ago I had frozen shoulder. After a steroid pack from my GP and some rest, it went away, but then weeks later I had excruciating chest/arm pit/hand pain. This went on for months until I ...

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