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

Postby Loobie » Fri Sep 25, 2009 6:27 pm

It's apparently an official title. I didn't know for sure, but they may even go to some medical school, though I don't think they're MD's. I wish it was tomorrow though. I feel like I'm probably feeling OK under this crap. My post op. was so easy I was really excited to see how I feel after just a few days and then this reared it's head again. The soreness makes so much sense. That's why it didn't hurt for a long time but does now. It's been like this so long it just pisses me off as much as anything right now.
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Postby SammyJo » Fri Sep 25, 2009 6:35 pm

Lew- Good luck with the shoulder rehab & the LDN. Luckily you don't have to join another forum to look up LDN tips - TIMS is where I started my LDN exploration 5 years ago, lots of good stuff here. And now this interesting CCSVI discovery, and so many good contributors like you!
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Postby Needled » Sat Sep 26, 2009 6:16 am

Physiatrists are MDs. Here's a quick description from Gaylord Rehab Center. I've seen 2 of them for my back, and they definitely have a different perspective than regular docs.
Physiatry—pronounced fiz eye’ a tree—is the medical specialty of physical medicine and rehabilitation. Medical doctors who are specially trained in this field are called physiatrists. They deal with the diagnosis, treatment and prevention of disability caused by acute or chronic disease.

So what does that mean for you as a health care consumer? A doctor who is trained in physiatry is especially adept at helping people who are recovering from minor to serious injuries related to:

1. Sports injuries
2. Work-related accidents
3. Back, knee or shoulder problems and other musculoskeletal disorders
4. Stroke
5. Multiple sclerosis and other neuromuscular or movement disorders
6. Effects of cancer treatment
7. Spinal cord injury
8. Traumatic brain injury
9. Amputations
10. Lung conditions
11. Arthritis

Physiatrists also help people who have acute and chronic pain issues.
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Postby Lyon » Sat Sep 26, 2009 6:32 am

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Postby Loobie » Sat Sep 26, 2009 7:31 am

Lyon wrote:
Needled wrote:Physiatrists are MDs.
Thanks for the description and pronunciation.

It amazes me a little that I'm 54 years old and have never run across the term before and I have to wonder if this is a fairly new field, although it seems everyone is familiar with it but me.


Bob,

Strange as it may seem, there are probably a few things that you are unaware of, but only a few :lol: :lol: .
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Postby Lyon » Sat Sep 26, 2009 7:48 am

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Postby mrhodes40 » Sat Sep 26, 2009 8:10 am

I have had the really incredibly good fortune of a physiatrist in my hometown who I have seen off and on for 15 years.

She is by far the most important person in my pile of docs as far as quality of life. It is not even a contest.

When a leg seems newly weak I see her, an arm whatever. Sometimes she can help me get it back sometimes we talk options.

It was her who sat next to me after I drove in to see her and said "Marie you can't drive with this leg this weak any more" as tears filled my eyes she said "Now hold on, you can still drive, we just need to change things for you a little bit, it's no big deal." She sent me to the local shop that adapts cars for people and I got to see EVERYTHING they offer. Oh man!! I got a left accelerator for my car, you can drive just fine from the left and the adaptation was 400 dollars. But I know now there are many many ways a person can operate a vehicle. If the left accelerator should be not enough, I will get hand controls. BTW FYI hand controls are available at all rental places so if you can drive with them (you ahve to get training) then you can rent a car that has some ... and these hand controls come off so your spouse can drive it too. The left accelerator comes off too...

They guy at the car adaptation place was probably a thalidomide baby, his hands come out from his shoulder, he told me they can adapt a car for a person who can move a finger.

At any rate I would encourage people to establish a relationship with a physiatrist. Mine did my EMG on my shoulder problem last monday and it is getting better already.....see my regimen entry for more on that

sorry for the hijack Lew, I hope your EMG and physiatirst visit is a great as mine was...... :wink:
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 Loobie » Sat Sep 26, 2009 8:50 am

Your last sentence was going to be my response; that I hope I get that rapport going with whoever I will see!. My Mom's peripheral neuropathy diagnosis came from a physiatrist. Marie, I swear it seems as if you and I got stuck with the same playbook. I didn't get the belly bleed thingy that I know took over your first month or so, but everything else is eerily similar!
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Postby mrhodes40 » Sat Sep 26, 2009 10:11 am

Yeah eerily the same..........so your nerve will be regenerating too!! :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
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Postby questor » Sat Sep 26, 2009 11:23 am

Loobie, sorry to hear you've had pain with recovery from the 2nd proc. Neck/shoulder pain and spasms have pretty much kept me down after my stent procedure on 9/16. The painful recovery really makes me appreciate those who have gone through a second op. (The pain has largely moved from my neck into my back/shoulder now, the shoulder almost feels dislocated at times.)

My GP gave me a prescription for norco (vicodin) which has allowed me to get some sleep at night (which I figure is pretty essential to healing) and helps with the pain. He also taught me a few simple movements to use to treat the shoulder, which seem to be helping, and recommended massage, I plan to do this at least once a week for a while.

I'm sure you already know this, but don't mix LDN with medications that contain opiates. You need to be off them completely before starting LDN.

Keep on healing...

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
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Postby CNClear » Sat Sep 26, 2009 3:44 pm

Lew...

Hope you are feeling better everyday!

What do we call the ones who have been on this forum a long time? Old TIMers :lol:

And what should we call the ones who are about to have or have just had surgery? (Like Pre/Post Op) Pro's or Poop's???

I need to know cuz I am going to be a Poop soon!! Because...

ALEX CALLED!!! Looks like end of November for me!! But i'm gonna ask to be on a waiting list for cancellations! Maybe I'll get to meet Cindi!

And if you hadn't gone to school with Lisa Griffith, I wouldn't know anything about all this and I would have missed 'knowing' you all...

So, I am so happy to tell you "Old TIMers' that I am about to be a "Poop"
because LG thought Lew was a 'hottie' in High School!!!!!! :lol: :lol:

I am practically giddy, here...

Lisa, aka CNClear
RRMS dx 1983, age 50
Waiting for Dake's call! (singing California, Here I go…)
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Postby Loobie » Sun Sep 27, 2009 5:45 am

Ha! Good luck Lisa. I'm flattered that SOMEONE thought I was hot; especially coming from Lisa, if she looks like a grown up version of her high school self, she's not doin' too bad on that front :lol: . Anyway I'm glad to hear it. You sound very hopeful. Just be on the lookout for long recovery if you're SP. Even though I was in my head, my heart really wanted stuff like the heat intolerance and that to be immediately affected. It is improving, but it's sooo slow. But it's soooo much better than slow the other way! But we're Americans damnit, give me that wonder pill! I mean aren't all those drug commercials true?!?!?

Well you have lots of post surgery tips and things like that on here and I hope you respond to this so very well. I'm really excited for you Lisa! It feels good to have some hope, doesn't it? One thing I know I'd have done, if I was able at the time, was to ratchet up the exercise and good diet for as long a period as I could have pre op. I know it would have made it easier. I went to a wedding yesterday where I was the best man and I stood in my black wool suit in the afternoon sun for about 30 minutes next to the groom. I was sooo frightened that I was going to really struggle since I was on my feet. It wasn't too bad! I was heat affected, but my eyesight never went bonkers, which in turn made the vertigo very light, which in turn made it so the "trigger never got tripped" and I ended up staying at the wedding until midnight! It was at my buddies house, so it's not like I had to run to the other end of the banquet hall to BR and stuff.

That kind of "I can still live my life" stuff is what this is all about for me. Yes, there were a few times I was sitting while others were standing, but just being able to be in a social setting and be engaged and not over in the corner is the thing that's doing it for me. Once I actually put a chair right up against the patio where all the people who had been drinking for a few hours were dancing, and I got a few chair dances! :lol: . I don't know what it is about RN's and parties. It must be the stress of the job, or so my wife tells me! I don't know if I'll ever get to a Bengals game again or not, but being able to engage with friends socially and not have to have them always come over to our house is one of my main motivators. I just have so much better self image and self esteem when I feel like I can still live like I want to to a degree.

And all because of Facebook!
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Postby CRHInv » Thu Oct 15, 2009 11:21 am

Hope things are looking up.
I hate to be such a pest.... but.... any chance for an update?
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Postby Jamie » Thu Oct 15, 2009 2:42 pm

Yeah, what's up with that, Lew?!

Your public awaits...
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Postby Loobie » Thu Oct 15, 2009 3:13 pm

It is coming tonight! I swear! I was talking to my lovely bride yesterday how I haven't updated and have been in kind of a holding pattern in terms of improvement or worsening. I'm just stuck. Well as my shoulder pain is taking a break (I won't say it's going away because it's done this 3 times now) I just seem to have WAY more energy and clear thought and walking ability and everything. So since I'm not working tomorrow, I figured what is a good way to kill time until "Supernatural" comes on? (I love that show), and she said "update your damn blog, the nurses at work are bugging me!". So tonight it is! It's funny. This whole thing has come in waves. I've had some REALLY good days since the second surgery, but that dumb ass shoulder is really in the way. I mean who'd think that pain up there (where, knock on wood, MS hasn't travelled to yet) would affect my whole body? Well I'm here to tell you it does. Plus I've let it keep me on the sidelines and was afraid to exercise at all thinking I would pull my overworked levator muscle (the small one that's doing triple duty since the trapezius went flaccid). The PT guy said "if you can do it and it doesn't hurt too bad, do it". So now I'm loaded for bear again. I need to stop writing; I want to save something for the blog!
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