Search found 74 matches

by Kathyj08
Fri Oct 01, 2010 5:18 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: It's a question of circulation dontcha know!
Replies: 13
Views: 2770

I have also felt that my issues were not just nerve related but also blood flow. I have had only 3 flare ups in 30 years (and have not gotten over this last one that came over a year ago) and while looking back at my notes from the one 16 years prior, I even mention feeling like I have blood pressur...
by Kathyj08
Thu Sep 23, 2010 10:01 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in Bulgaria
Replies: 1107
Views: 226253

Thanks! you too!
by Kathyj08
Thu Sep 23, 2010 5:04 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in Bulgaria
Replies: 1107
Views: 226253

Liva,
Your turn is coming up soon. Good luck. They seem very knowledgable there!
Kathy
by Kathyj08
Thu Sep 23, 2010 4:16 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in Bulgaria
Replies: 1107
Views: 226253

At this point, I am not ready for stents. Dr. Mehta says he keeps in contact with companies that make stents and devices and he feels that something will be designed in the near future more for the veins. That's hopeful. I am not sure I will go somewhere for the 2nd time around or wait a bit. I do k...
by Kathyj08
Wed Sep 22, 2010 1:54 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in Bulgaria
Replies: 1107
Views: 226253

Dania, I've been wondering how you are doing. I've also wondered about the long flight and decided that I will most likely drive for the 2nd time around just to be sure. I don't really know where yet. We drove 12 hours to Albany. It wasn't too bad. Please let us all know what you find out. Did you n...
by Kathyj08
Wed Sep 22, 2010 7:39 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in Bulgaria
Replies: 1107
Views: 226253

I had my procedure done in Bulgaria the beginning of July. All 3 veins were ballooned. My symptoms have been many but mild so I didn't notice big improvements. I definately noticed that my balance was getting better but not for very long. I had a feelling things were reversing so I went to Dr. Mehta...
by Kathyj08
Thu Sep 16, 2010 7:22 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Anyone get an MRV here in Minnesota?
Replies: 27
Views: 3739

Does anyone know if you must have a definitive ms diagnosis for these IR's wanting to be covered under Dr. Hubbards IRB? I have had the procedure once and had severe stenosis and have since re-stenosed. I didn't know what the must haves or have nots are.
Any info is greatly appreciated!
Kathy
by Kathyj08
Thu Sep 16, 2010 4:59 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Re-stenosed like I suspected, sorting things out
Replies: 0
Views: 1430

Re-stenosed like I suspected, sorting things out

I had the procedure in Bulgaria about 10 weeks ago. Hadn't posted much in regards to any changes. I wanted to wait a bit first. I had ballooning in all three veins, no stents. I have many symptoms but most are mild. I actually have not had an ms diagnosis. A few flare ups over many years I was certa...
by Kathyj08
Thu Sep 09, 2010 8:34 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: left or right jugular constriction?
Replies: 14
Views: 3565

My right was worse than my left. All 3 needed ballooning. My symptoms are mild (but many) and symptoms a little more noticable on the left. Also have pulsatile tinnitis in left ear mostly when laying down. Getting checked next week to see if I have re-stenosed.

Kathy
by Kathyj08
Wed Sep 01, 2010 5:09 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Dr. Mehta in Albany, NY - Thank you, Kacey!
Replies: 315
Views: 74935

I've done most of my communicating with Megan via e-mail, but there were a couple of times she called me with questions. I'm sure she gets loads of e-mails but perhaps you can send her another one stating that you cannot reach her by phone and could she please call you instead?

Kathy
by Kathyj08
Mon Aug 23, 2010 5:46 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: I believe I can fly
Replies: 11
Views: 2228

Wonderful news eyebrow!
by Kathyj08
Tue Aug 03, 2010 3:46 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Does anyone with CCSVI have 'super hearing' ?
Replies: 24
Views: 5257

I do also. I had the procedure 3 weeks ago and still get the heartbeat in the left ear along with other pulsatile noises. It does seem to be a little milder though since the surgery so hopefully I've not re-stenosed. Here's an interesting thing. I've only had a few flare ups in a 30 year period and ...
by Kathyj08
Sun Jul 25, 2010 7:15 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Possible CCSVI without MS diagnosis?
Replies: 8
Views: 2852

Annbanan,
Check your pm box.
Kathy
by Kathyj08
Fri Jul 23, 2010 3:47 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Relief
Replies: 10
Views: 2123

That is great Laura.
I was thinking about you last night after reading your troubles in another post, wondering what could be happening and why.
And now this!
So happy for you!
Kathy
by Kathyj08
Mon Jul 19, 2010 5:10 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in Bulgaria
Replies: 1107
Views: 226253

Kar, yes, 2 nights is correct but I just had angio and no stents. yes, just doppler ultrasound and then the venography if anything found with the ultrasound. The visiting hours not sure about as my husband stayed in the room with me until I was released. yes, true about the hotel pool. (a very nice ...

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