Catfreak's Recovery Notes

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

Catfreak's Recovery Notes

Postby catfreak » Tue Sep 08, 2009 1:37 pm

Patient: Cindi

Diagnosis: Probable MS 2/03 and RRMS 4/08 - at age 48

Lesions: multiple brain lesions, 8 or so, small, round and scattered

Symptoms: constant headache, ringing and buzzing in left ear, severe fatigue, bowel issues, depression, constant twitches in legs and occasionally in arms and hands, daily numbness and tingling in feet, legs, arms and hands, left hip pain, slight left foot drop when fatigued, severe heat intolerance, severe brain fog, problems with processing, memory and speech, itchiness on face and head and overall I just want to get out of this body that has betrayed me.

EDSS: 4 - self assessment test at Dr. Dake’s Office

Treatments: Tysabri Infusions every 4 week, could not tolerate Rebif side effects

Diagnosis at Stanford: 9/09 CCSVI- Left jugular vein occluded with many small collateral veins, right jugular occluded by an Arachniod Tissue Cyst in the Sigmoid Sinus. Occluded left jugular carrying all the blood flow

Treatment: 9/09 1 stent on left side, 1 on right side and balloon where left and right jugulars meet in upper chest

3 days after procedure: ringing/buzzing in left ear is gone or at least a lot better.

Blood Pressure was 130/88 with a BP pill daily. Now it is 117/77 with no BP pills at all.

More to come......
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.
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Re: Catfreak's Recovery Notes

Postby Rokkit » Tue Sep 08, 2009 3:53 pm

catfreak wrote:Blood Pressure was 130/88 with a BP pill daily. Now it is 117/77 with no BP pills at all.


Really? That's crazy. Could it be because of the Coumadin somehow? My BP was perfectly normal until my MS symptoms started, it's been high ever since. If that got fixed, I would be very happy.

Rokkit
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Postby catfreak » Tue Sep 08, 2009 4:08 pm

Rokkit,

I am going to take it several times a day. When I get up, while I work, get stressed and go to bed. Then see if I can go without the BP meds.

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.
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Postby CRHInv » Tue Sep 08, 2009 6:56 pm

Cat,
Keep the updates coming! It is great to hear how you are progressing. I am glad to hear of the improvement in your hearing.
BTW, I like the new cat. Even though the cats are a little scary themselves, the spider was really scary!
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Postby catfreak » Tue Sep 08, 2009 7:37 pm

CHRInv,

I hate spiders too!!

I have noticed this evening that I still have some ringing in my left ear. :cry: :cry: I was hoping it would be gone for good.

Work went quite well today. I work from home so did not have to deal with getting out. I am quite tired tonight and ready for some good sleep and then see what tomorrow brings.

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.
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Postby catfreak » Wed Sep 09, 2009 7:06 am

This morning my head and neck still hurt and I am not taking any pain meds for it. I may have to break down and take some ibuprofen.

My BP was 117/75 this morning. Pulse 82 and it is usually 96-100 range.

The ringing is gone this morning.

My legs and feet started swelling last night and went down during the night but seem to be swelling again this morning. This could be not taking the BP pills since they are also a diuretic.

I go today for my INR test.

More to come....................

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.
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Postby mormiles » Wed Sep 09, 2009 8:17 am

Cindi, Wow! Life without that obnoxious noise in your head! Steve's sounds like a machine shop and mine sounds like cicadas (and I don't even have MS). It would be really wonderful to lie down for sleep without all that uproar going on. Congratulations on your new state of silence.

By the way, I was thinking about bathing our cat. It would be his first bath ever and my first time ever to bathe a cat. Since you switched your cat avatar, I'm having second thoughts.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby CRHInv » Wed Sep 09, 2009 11:10 am

Cat - you are really doing some overtime with the avatars. I haven't even gotten around to my first one! BTW, I like this one with the tapping fingers. I think he is waiting for all of us to get better!
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Postby catfreak » Wed Sep 09, 2009 12:34 pm

CHR

He is most certainly waiting on all of us to get better and he waiting for all the news from Cheer!! :D :D

He is a bit impatient like me.

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.
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Postby mrhodes40 » Wed Sep 09, 2009 2:19 pm

Pretty cute!

every day will be better Spideycat!!
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
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Postby radar22 » Wed Sep 09, 2009 3:08 pm

I like your new Cat, too. I don't know how to get a picture on mine.

About your legs, did you have swelling in them b4 the procedure? I just wondered if that was a common symptom. I don't remember reading about that. I read about neck pain and different things. Just wondering, since your B/P is doing so well. Are u drinking lots of water??? :)
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Postby catfreak » Wed Sep 09, 2009 5:08 pm

radar22,

Hi, I love the cat too! It looks like my Amber with a hat on! :D :D :D

I took my BP 5 minutes ago and it was 130/85 so I may have to go back to the meds. My feet and ankles should go down with the meds.

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.
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Postby bibliotekaren » Wed Sep 09, 2009 5:17 pm

A hearty congrats on getting rid of the ringing in the ear!! Ah, the sound of silence.

I've had tinnitus in my R ear for about five years and have on/off pulsatile tinnitus in my L. Am holding out hopes that the CCSVI intervention may help when I can get it.

Hope the neck gets better.

Donna
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Postby ErikaSlovakia » Wed Sep 09, 2009 11:29 pm

Hi Cat!
I love your new avatar!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby catfreak » Thu Sep 10, 2009 5:17 am

Thanks Erika!!

I am thinking about you every day and praying you get the tests and procedure soon!!

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.
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