Rose Testing/Stents

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

Postby mrhodes40 » Sun Dec 06, 2009 8:18 am

Oh my I agree with Mark about the stay-- stay local for a few days

Rose good luck with the shoulder and the follow up. My shoulder is doing really well, the exercises help!
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 Rose2 » Sun Dec 06, 2009 12:38 pm

Hi All!
Thank you for the replies. I always love seeing them in my email list.

CureIous- Thank you for the INR support. You are so correct. My Internist is in a GI/Cardio focused practice so I expected the best from him. I am seeing a new Internist this Tuesday and will not be returning to his practice. The new internist is 'young'. LOL I met all of the 'youngest' doctors while I was in the hospital. So hard to look at someone seriously who is younger than my kids! LOL again.
But at least they won't retire on me! I am looking forward to all of the New School mindset I expect from this new crew.

Marie- Thanks. I am real anxious to see my stents, too. It is so funny that a few 'funky' type of excercises can make so much difference in my shoulder. PT to me is always like, Well, who knew??
I am glad to hear your shoulder is doing well.

CRHInv- So did you have your follow up yet? Glad to hear of your progress too.

jay123- Please just plan on staying at the hospital until you feel like leaving. Everyone of us is different. I had to stay longer due to GI issues and pain med problems.
Procedure=Surgery. I think that the word 'Prodedure' gets thrown about for some reason without the the word 'surgery' to accompany it.
This is surgery. You may want to stay longer.
Like the nurse said to me, "Could you go home now and be OK'?
I had to say No. They admitted me into the hospital because the Stent Procedure has a 23 Hour time allotment downstairs in their PostOp hospital floor area, then after that you get admitted to upstairs floor.
I had a KILLER headache from my upper stent and got a nice dark, quiet room upstairs. It was heaven. Stanford had great nurses and I took advantage of the care. Do the same thing and you will be better prepared to travel home. There is no need to push it. Make sure you are ready to travel. Just my advice.
You do NOT have to leave after the 23 hour window, it is just a matter of paperwork for Stanford and moving your bed. It is not a big deal, so do not feel pushed, rushed or in a hurry to move away from good care.
Make sure you get the Stanford Hospital patient rate from your hotel. I think most of them are about $135.00/nite for their rate.
I know that there are shuttles from the hotels to the hospital but not sure about from San Jose Airport to Stanford Hospital area hotels. I would doubt it. I think it is further than shuttle distance.
Thanks, Rose
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Postby Sharon » Sun Dec 06, 2009 12:55 pm

Rose -

Keep up with the exercises for the shoulder -- we sometimes think things will just get better by themselves --- this is not the case with our shoulder "stuff". Actually, it is not the case for anything -- we need to get an exercise program started and stick to it. We have a few muscles (and nerves) that have not been stimulated in a while -- they need to have a kickstart to get moving again.

Look forward to your update when you get back from the follow-up

Sharon
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Thanks Again

Postby judipom » Sun Dec 06, 2009 9:29 pm

I just want to thank you all again for this incredible website. I've been laid up this weekend with a MS relapse and reading through the posts here has kept me hopeful. What a wonderful group of people you all are. Judi
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Opthomologist!

Postby Rose2 » Sat Jan 30, 2010 8:33 pm

Hey All. I don't want to start another thread but I found this exciting!
I saw a new opthomologist locally last week, I am having my right eye cataract repaired in February.
I left my older long-time opthomologist because of the Blow Off treatment he gave me regarding the CCSVI Liberation I had at Stanford in October. He was so full of himself and so uninterested in my successes.
SO, Thursday I saw an optholomologist that my friends see. I gave him a copy Dr. Dake's first post-op letter for my chart, tried to simply explain what I had done and why.
WOW. What a wonderful reaction! He fell off his stool, said Stop! Not so fast. Back up and don't miss a detail! 2 1/2 hours!!! He was SO excited for this news he was beside himself. He said he knows he is so often the first MD to see patients before they are diagnosed With MS ( Optic Neuritis being such a first symptom). AND he know how he is the only MD treating so many patients that are not/never diagnosed, the Limbolanders even tho they are most likely positive MSers.
He has family, friends and patients that will be getting all the info fast.
What a difference from Opthomologist #1 and how justified I felt!
He is very excited to give the Liberation Information to his patients.
Just wanted to report on a fun day at the eye doctor!! Rose
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Postby ozarkcanoer » Sat Jan 30, 2010 8:57 pm

Rose !! Wonderful news. I have double vision... maybe I should see an ophthamologist too. Without my glasses I see 2 of everything. I've only ever seen optometrists.

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YES! Ozarkcanoer!

Postby Rose2 » Sat Jan 30, 2010 9:35 pm

I stongly recommend MSers to see an opthomologist to check the whole eye. My medical insurance has always paid for the opthomologist but never the optometrist. fyi.
And I love this story. This new opthomologist was telling me how his brother in law is very progressive MS and his vision was going down hill fast. and like we all do, everyone, including the opthomologist, considered the vision a result of the MS.
Then for some reason, he examined him, and guess what? Cataracts! and one of his eyes has been treated and is 20/20 or something really great like that!!!
It is just too easy to dismiss, and have our medical practioners of all specialties, also dismiss too much to MS. We need to think outside the MS box and not just roll over and say Just MS.
At least this is what I learned here.
This guy was very concerned with how many MSers DO stop investigating thier own symptoms and how undertreated and underdiagnosed the MS community is.
We only have 2 eyeballs. So I just found out!
Ozark, I have had blurry vision for over a year. I saw 3 optometrists who kept saying my eyeglasses prescription had not changed much. So I could not justify spending the money on new glasses if the prescription was not different. BUT DAM IT, I JUST CAN'T SEE. Blurry, double, sucks.
Finally the 3rd optometrist works with Optothomologist #1 and saw something was wrong. She also agreed the presecription had not changed much BUT that did not jive with my emphatic complaints about my vision. So then the opthomologist #1 found the cataract. He said the
entire population is getting cataracts 10 years earlier than our parents did. So, yes, I would rule out any problems that might be corrected and help your vision. Rose ;)
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Postby whyRwehere » Sun Jan 31, 2010 12:52 am

Good for you Rose. It can happen the other way. too, though. My husband was not peeing (caused by a reaction to the antibiotics and the fact that it is difficult anyhow due to the MS), and the doctor kept talking about operating on the prostrate....finally we had a scan done which showed that it was a normal size, so the doctor was a bit disappointed to learn that there was no reason for surgery.
You said:
He said the
entire population is getting cataracts 10 years earlier than our parents did.

Did he have a theory why that is?
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Postby Nunzio » Sun Jan 31, 2010 9:40 am

Hi, I am an ophthalmologist.
The reason we do cataract surgery much earlier now is that the procedure has improved greatly. Now we do the procedure at the fist sign of visual impairment while before the cataract had to be "mature" which means much more advanced and blocking totally the vision.
Changing subject I think it would be great to test people with optic neuritis for CCSVI, specially women, since they have a high probability to develop MS and finding vein narrowing in this population would validate the relationship between CCSVI and MS.
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Postby ozarkcanoer » Sun Jan 31, 2010 10:05 am

Nunzio,

What about people who have double vision instead of optic neuritis ?

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Postby Sharon » Sun Jan 31, 2010 10:09 am

I would suggest everyone go to an ophthalmologist and get an OCT scan. This is considered medical, so is paid for by most insurance plans. The OCT scan has been in use for a few years as a marker for brain deterioation in MS. Check out this link http://www.hopkinsmedicine.org/Press_re ... 15_07.html

I have just recently had my third annual scan. Fortunately, my scans have been normal and they have not changed from year to year.

As a side note, at my recent appointment, the ophthalmologist told me he wanted to give me a new prescription. Of course my first reaction was -- "why, what's wrong?" He smiled and said "nothing - everything is right." "I can give you a prescription which will correct your eyes to 20/15 in both of your eyes." I saw him one year ago -- he said he could not have corrected to 20/15 at that time. Obviously, my first thought was the procedure at Stanford had positvely changed something. The good doc was also left wondering about it. He said he is rarely able to correct vision to 20/15 for someone at my age.

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Postby Nunzio » Sun Jan 31, 2010 11:29 am

ozarkcanoer,
in only a small percent of people with double vision the cause is MS, for the large majority is a microvascular problem affecting the nerve that control the eye muscle. sort of a ministroke.
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Postby Richardk » Sun Jan 31, 2010 12:10 pm

Went to see the movie Avatar ...while I have vision that is easily fatigued, but not double vision, I couldn't see any 3D effects with the special glasses provided...I wonder if this may be related to optic neuritis


Richard
Dx'd 1996 SPMS EDSS 7.5
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Postby bestadmom » Sun Jan 31, 2010 12:28 pm

My initial visit for ms was to the opthamologist for double vision - 6th nerve palsy, which is a nerve problem which prevents one of the eyes from moving where it needs to. In my case, my left eye wouldn't move to the left of straight ahead, which caused the dbl vision.

Rose, I love the response of your new doc and it's given me the idea that we need to get the word out there to the opthamologists as a group so they can be aware of additional ways to help their patients.

In my case I was sent directly to the neurologist. Until neuros are on board w/ccsvi, it could help give potential ms-ers an in to the interventional radiologists.
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Postby jozee » Sun Jan 31, 2010 12:47 pm

Nunzio,

Regarding your comment on double vision being the result of a mini-stroke; I had double vision at age 17 after an episode of Bell's palsy. The double vision was eventually corrected with surgery after a lengthy hospital stay. At the time the doctors had difficulty diagnosing my condition. Possible MS was considered. I'm now 46, and I wonder if I did have a stroke when I was 17.

The theory behind CCSVI is filling in blanks in my early history with MS.

Jozee
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