High Hopes on Pacific Coast

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

Postby CureOrBust » Tue Sep 15, 2009 4:37 pm

questor wrote:Looks like my MRV results fit the usual pattern seen at Stanford so far. Left and right IJVs both essentially fade away to nothing at about mid-ear.
YAaaaawn.. its all becoming so blasé..

Good luck for the op.
User avatar
CureOrBust
Family Elder
 
Posts: 2900
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby mormiles » Wed Sep 16, 2009 9:29 am

God bless you Tracy. I've just prayed for you and for Lew.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
mormiles
Family Elder
 
Posts: 215
Joined: Tue Mar 07, 2006 4:00 pm
Location: 75098

Postby Loobie » Thu Sep 17, 2009 12:18 pm

Here's to a better day today dude. Last night seeing you was great. All I can tell you is that level of pain subsides fairly quickly and then it's just more "achey". It was great actually shaking your hand.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby catfreak » Thu Sep 17, 2009 1:41 pm

It get's better!

Take care of yourself and let us know how it's going.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Postby mrhodes40 » Thu Sep 17, 2009 2:39 pm

It does get better....soon you'll be feeling more like yourself. EVERYONE has that first few days of feeling "OMG what have I done --OUCH!" LOL it is ok.........take your dilaudid or whatever and do not try to tough it out
marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Loobie » Thu Sep 17, 2009 4:20 pm

Now I know how to spell dilaudid :lol: . I hope you get to feeling better soon. Those high stents hurt like hell for a couple of days.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby questor » Fri Sep 18, 2009 10:48 am

I've now got a new set of stents, one each on the left and right IJVs. During the procedure, the left stent was inserted first (I think it's 7mm). When they inserted the right stent, I heard a "Wow" from the docs as my collateral veins immediately disappeared. Dr. Dake told me before I left that my right side veins were large enough to take a 9mm stent. They run from the bottom lobe of each ear to the start of my molars.

Recovery has been a little painful, but I'm now able to hold food down. It's definitely a little better each day.

I've added a little MJ to the percoset for treating pain and spasms, it has also helped with the nausea.

Got back yesterday, what an experience!

Lew stopped by my room at the hospital to wish me well the evening of the surgery, he made a stop in between running laps as part of his recovery. :) :)

I'll add more to the patient log later, off now to rest with a hotpack.

(BTW, someone in an earlier post had made a suggestion to request a Foley catheter before surgery, and to ask them to leave it in during the night in the hospital, I did, and this really helped to make that first night easier.)

Thanks for the good wishes, everyone.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
User avatar
questor
Family Elder
 
Posts: 274
Joined: Mon May 22, 2006 3:00 pm
Location: Northern Calif Monterey Bay Area

Postby mrhodes40 » Fri Sep 18, 2009 11:00 am

Tracy, good to hear things are settling a little, it sounds about right!! the hot packs help a lot, I put them only low down on the neck/upper back far from the actual stent area, at that time they were saying no hot pack directly over the stent area as they did not want bleeding issues. Has that changed then? Did Dr D specifically recommend hot packs? I want to make sure we are not generating new ideas for people that are not specifically recommended.

FYI I am a lady and my right jug has a 12mm stent 8O I still have some neck issues, but Dr D learned that smaller ones are fine; his original thought was bigger is better... You'll be feeling better every day! :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby catfreak » Fri Sep 18, 2009 11:17 am

Sooo glad to hear you are doing OK.

You have been on my mind for days and we are a persistant bunch here. We will bug the crap you of you till you let us know how you are!!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Postby Loobie » Fri Sep 18, 2009 11:27 am

I'm so glad you are well enough to post Tracy. I could tell you just wanted to 'fetal position' it when I dropped in. Those high stents, oh how they hurt! Here's wishing you nothing but healing and high hope; you deserve it.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby Needled » Fri Sep 18, 2009 12:38 pm

Glad everything went OK. Better days ahead!!
User avatar
Needled
Family Elder
 
Posts: 361
Joined: Wed Jan 14, 2009 4:00 pm
Location: Connecticut

Postby questor » Sat Sep 26, 2009 11:37 am

mrhodes40 wrote:...the hot packs help a lot, I put them only low down on the neck/upper back far from the actual stent area, at that time they were saying no hot pack directly over the stent area as they did not want bleeding issues. Has that changed then?

FYI I am a lady and my right jug has a 12mm stent 8O I still have some neck issues, but Dr D learned that smaller ones are fine; his original thought was bigger is better... You'll be feeling better every day! :D


Wow, 12mm stents? That's pretty amazing, especially now that I have something to compare it to (30% larger than my set).

I don't remember Dr. D explicitly recommending heat, so I don't think he's changed his approach. When I was using it on the neck, I kept it away from the stents, especially after I read your post. Now I'm using heat mainly on the back and shoulder, but only a few times a day.

Thanks for the advice, and you're right, every day is a little better.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
User avatar
questor
Family Elder
 
Posts: 274
Joined: Mon May 22, 2006 3:00 pm
Location: Northern Calif Monterey Bay Area

Postby CureIous » Sat Sep 26, 2009 11:57 am

questor wrote:
mrhodes40 wrote:...the hot packs help a lot, I put them only low down on the neck/upper back far from the actual stent area, at that time they were saying no hot pack directly over the stent area as they did not want bleeding issues. Has that changed then?

FYI I am a lady and my right jug has a 12mm stent 8O I still have some neck issues, but Dr D learned that smaller ones are fine; his original thought was bigger is better... You'll be feeling better every day! :D


Wow, 12mm stents? That's pretty amazing, especially now that I have something to compare it to (30% larger than my set).

I don't remember Dr. D explicitly recommending heat, so I don't think he's changed his approach. When I was using it on the neck, I kept it away from the stents, especially after I read your post. Now I'm using heat mainly on the back and shoulder, but only a few times a day.

Thanks for the advice, and you're right, every day is a little better.

--Tracy


The "Oh crap what did I get myself into" feeling goes away after a bit. Glad to see you got through it well. I would have happily gone to fetal position my first night iff'n was able! Nurse! More Morphine! Nighty Night!

It gets better every day. A month from now you'll be wondering what all the fuss was about. How are you feeling?

Mark.
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
User avatar
CureIous
Family Elder
 
Posts: 1202
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby questor » Sat Sep 26, 2009 12:23 pm

CureIous wrote:It gets better every day. A month from now you'll be wondering what all the fuss was about. How are you feeling?

When the pain/spasms aren't acting up, I feel pretty good, actually!

With the medications I'm now taking, I have to contend with some side-effects (added dizziness, additional urine retention, nausea, etc), but these feel different from the usual MS symptoms.

Things I've noticed so far:

1 - No restless leg syndrome since the night before the surgery. Before surgery, I experienced it nightly (for the past several years now).
2 - Reduced numbness and tingling in both legs below the knees.
3 - Heat sensitivity is much reduced compared to before the procedure.
4 - Bladder is better in certain ways, but too soon to elaborate.
5 - Actively dreaming at night.

I've also had some awesome moments of visual clarity/acuity (intermittent).

I look forward to recovering to the point that I can start to exercise again, to feel for improvements in physical fatigue/stamina. This may need to wait until I'm finally off the coumadin and back on LDN.

--Tracy
Last edited by questor on Tue Oct 06, 2009 10:21 am, edited 2 times in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
User avatar
questor
Family Elder
 
Posts: 274
Joined: Mon May 22, 2006 3:00 pm
Location: Northern Calif Monterey Bay Area

Postby CRHInv » Sat Sep 26, 2009 12:42 pm

Tracy, this sounds really good, just ten days out. Hang in there!

I look forward to recovering to the point that I can start to exercise again, to feel for improvements in physical fatigue/stamina.

What a great attitude!

Take care.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 3:00 pm
Location: Chandler, AZ

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service