Mel & Jamie's ongoing Stanford experience post!

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

Postby mrhodes40 » Fri Jul 10, 2009 7:40 am

I needed lots of rest. I had that belly thing. the more a person can do the better...BILL went to half moon bay one day, Alex went to wine country.......its all good. Our return trip is going to be another resting vacation I hope wine country this time for us. We NEVER vacation so it is good for us on another level too, ya know? Like I hate vacations they are too hard for me usually.... feels good to be out on a positive venture.
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 peekaboo » Fri Jul 10, 2009 7:50 am

i love half moon bay...cute town along the coast. Wine counry is good too. Wine country is on your way home...stay in a B&B for the full effect :)
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Postby Jamie » Fri Jul 10, 2009 3:53 pm

Day three - very alert, stayed up late last night, in fact I wanted to go to bed first!

Didn't get super hot in the night for the first time in ages, no night sweats and kicking off of sheets. In fact hogged duvet/comforter for the first time in 2 years.

Tingling in left hand has gone for the first time in a month.
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Postby peekaboo » Fri Jul 10, 2009 4:28 pm

nothing like a good snuggle :roll:
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Postby Sharon » Fri Jul 10, 2009 6:40 pm

Sounds like Mel is coming along just fine -- good for her! Thanks for the update.

Sharon
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Postby chrishasms » Sat Jul 11, 2009 9:59 am

123
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Postby Jamie » Sat Jul 11, 2009 12:43 pm

Not an idiot.

Unusually cautious maybe.
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Postby chrishasms » Sat Jul 11, 2009 3:28 pm

123
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Postby Jamie » Sun Jul 12, 2009 2:03 pm

Mel fell asleep last night after me, again!

Also she was up before me today which NEVER happens.

Yesterday she had a popping/ringing sensation in her ears, like a pressurisation feeling.
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Postby chrishasms » Sun Jul 12, 2009 3:55 pm

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Postby Jamie » Mon Jul 13, 2009 1:11 pm

Follow up to PCP/GP:

This is a letter of followup to describe the recent care of your patient, Melissa xxxxx. As you are aware, Melissa is a 32-year-old woman with a history of multiple sclerosis. She works as a geneticist at xxxxxxx, and was diagnosed in August of 2007, following an episode of double vision involving the left eye, and arm greater than leg fatigue. Since then, she has been on a number of therapies, but symptoms of fatigue, extreme heat sensitivity, and constipation persist.

On July 6, 2009, she underwent magnetic resonance imaging and magnetic resonance venography, performed at Stanford University Hospital. The results demonstrated demyelinating lesions in the brain, consistent with her diagnosis of multiple sclerosis. In addition, the right jugular vein was dominant, but both jugular vessels had moderate stenoses apparent at the cervical vertebral levels 2 and 3. Of note, prominent vertebral and epidural veins were observed, with relatively slow flow within the paraspinal venous sinuses.

Subsequently, on July 7, 2009, she was taken to the cath/angio laboratories at Stanford University Hospital, where bilateral jugular venography and azygous venography were performed. The jugular veins had an appearance similar to that noted on the prior MRV. The azygous vein appeared normal. Pressure gradients across the mid-jugular narrowings at the C4 level, demonstrated bilateral 3 mmHg pressure drop-offs. Subsequently, a 12 mm x 40 mm long self-expanding stent was placed in the right jugular, bridging the lesion. Following this, a 7 mm diameter x 40 mm long self-expanding stent was placed in the left jugular at approximately the same level as the one on the right. Following stent placement, completion venography demonstrated complete obliteration of the narrowings. This correlated with obliteration of the previously noted pressure gradients. The patient was then recovered without difficulty, and she stayed in the hospital overnight.

She was loaded with 300 mg of Plavix, and will be maintained for the first 2 months on 75 mg p.o. daily. She started Coumadin at a dose of 5 mg a day, and she will continue this dose until she sees you for testing and recalibration, to ensure that she maintains an INR within the range of 2 to 3. Aspirin 81 mg per day was also commenced. In addition, nonsteroidal anti-inflammatory therapy with ibuprofen 400 mg q.6 h. was prescribed for the first 4-5 days.

It is anticipated that within 2 months Melissa will have repeat MRI and MRV. If the venography appears normal, it is most likely that her Coumadin and Plavix will be discontinued, and she will be maintained only on aspirin 81 mg daily. I anticipate she will be contacting you in the near future to arrange for a PT/PTT, so that you may adjust her Coumadin dose, to maintain the INR range previously noted.
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Postby Jamie » Mon Jul 13, 2009 1:15 pm

So an update, Mel's back at work today.

She is tired after a long day but not MS tired.

She's got a weird thing going on with her contacts, thinks her eyes might be different. She's going to try some different ones tonight and if they are weird too she'll head over to her optician.

Had her bloodwork done, she's a 1.5 so the dose of wafarin is to be increased to 10, 5, 10, 5, 10, 5, 10 for a couple of weeks then they'll test her again.

All is well and she's feeling good. Neck is still stiff and sore of a morning, eases up through out the day. She stopped the percocet on saturday and has been okay with advil and ibuprofen.

All in all things are good!
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Postby Jamie » Mon Jul 13, 2009 1:16 pm

she's going to try some different contacts tonight not eyes.

i should clarify.
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Postby zap » Mon Jul 13, 2009 1:30 pm

Maybe a change in ocular pressure brought about by opened venous drainage?
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Postby Jamie » Mon Jul 13, 2009 1:37 pm

Perhaps!

Also, apparently its common for pregnant women's prescription to change due to venous pressure.

We'll see, may just be crapped out contacts!

She's due a visit to the optician anyway, she's had MS eye-complications as well as really poor eyesight for years.
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