Question about incision site for CCSVI

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Question about incision site for CCSVI

Postby Boopieup » Sat Oct 10, 2009 7:20 am

My question is this.
After the surgery, do they make you lie flat to let the incisions heal? Where do they do them exactly?

I ask because right now...
1. I can't lie my head down flat. I get the spins and freak out.
2. I can't put my feet down flat because of the problem with my legs and feet. They have to be elevated pretty high (above the heart) at all times.
3. I can't sleep unless I am rolled over to the right and end up in a fetal position with both my head and feet still elevated. Kind of a pretzel thing. The bend in the groin has a pretty substantial crease at that point with skin contacting skin.

I'm just wondering if these points would be a problem after surgery.
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Postby Loobie » Sat Oct 10, 2009 7:59 am

It's really just a 'hole'. The site is very small and they actually only use a band aid to "suture" it. No cotton behind it or anything. I don't remember, and I've had the procedure twice now, receiving any special instructions for posture. I was just told to keep my eye on it and I never laid the bed flat. I was always in a position like the craft matic adjustable beds :lol: . Seriously, it was uncomfortable for me to lay flat and no one said bupkus. I also think that since you go to outpatient recovery, you don't have any restrictions on that.
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Postby gibbledygook » Sat Oct 10, 2009 8:57 am

I would talk to the Professor about all of your issues as you will have a drip in your hand so that this might make your usual sleeping arrangements very difficult. I failed to warn them of my bladder weakness and should have had a catheter in place overnight. I hope that your dizziness is the first thing that disappears.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Loobie » Sat Oct 10, 2009 10:48 am

Gibs, Good point. That foley was my lifesaver. Since I void only about 200ml and I had 2 entire liters, it would have been worse of a hell night than it already was. So Alex is right, if you don't want to get up about 20 times on the night when you really need to be not doing it, ask for a foley. I think the staff is getting used to that request.
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Hey Loobie

Postby brave » Sat Oct 10, 2009 11:14 pm

I'm so glad about your improvements and reading your personal blog that you're able to company your daugter in her soccer games, Great

Just have one question for you: what were your MS symptoms before CCSVI surgery? did you have any disability? if yes, to what extend?

Thanks in advance for your time answering my questions,
brave
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Postby Loobie » Sun Oct 11, 2009 6:26 am

Brave,

I have plenty. I was still going to the occasional soccer game. However, I would have my wife pull up as close as she could get to the field, hop out with my chair, and go sit until the game was over; in a diaper even though I had cathed right before I went. That one I wrote about was significant because not only did I stand and watch the game, but I didn't cath before the game, didn't wear a diaper and walked to the bathroom twice during the game and was still able to drive home. That much walking would have required at least a 1/2 hour of serious down time before my dizziness would have allowed me to drive.

I am a 4.5 on the EDSS. I'm still ambulatory, meaning I can walk by myself, but it hasn't been very far. I could walk from my car to my office. From my office to the bathroom and stuff like that pretty normally. Any more than that and I would start to stumble and limp pretty badly and actually get to the point where I just simply had to stop. Also, bladder (2 things; over active and sphincter/bladder muscle dissynergy), bowels, optic neuritis, very bad dizziness, balance, cognitive issues, constant pain in my lower legs, disorgasmia, mild ED, headaches. That's all I can think of now. Pretty much the full monte except I'm still on my feet. I have put my cane away for now and haven't had it out since the surgery (a little during recovery, but just to make sure I didn't go down).

So I had piled up quite a list and it was getting tough to manage all of that and still try and live a life not 100% taken over by management of my disease. I was literally getting home from work and not moving. I would plop on the couch and have everything brought to me (including a urinal) because mine is like that. The function I do have doesn't last all day. Since the surgery, and in a vacuum of exercise due to my shoulder, I have gained enough endurance to function at home after work. Not normally, but enough to not be consumed by pain, and enough to allow me to move about the house and interact with my family. I ain't cured by any stretch and don't know that some of this disability I've had for 8 years will ever go away. I don't really know that any of it will fully abate. I just want to stop progressing and try and exercise to a sweat again. That's my goal. Things like bowel function and stuff like that work SOOOO much better when you can work out to a sweat.

Damn glad I did it, but upset that my shoulder is all screwed up and I can't start working out hard yet. I'm walking about a 1/4 mile now for my exercise, and that just isn't enough to make me sweat, so I'm not there yet! Might not get there, but that's why I did all of this. So I could have a choice in what I do or don't do. Right now it's just so extremely limited.

Hope I answered, now let's give this thread back to Boopie's ? about the incision site!
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surgery for CCSVI

Postby GiCi » Mon Oct 12, 2009 8:46 am

I do not understand why you all continue to call the liberation procedure, being it balloon dilatation or the placement of stents, "surgery".
I think I have explained in one of my previous posts that going with a catheter though a hole in the femoral vein in the groin is not "surgery", although it is called an "invasive" procedure because it breaches the integrity of the skin. It is a punture of the vein, like when one has a blood test.
I do not think mine is a sophism because the term "surgery" calls to mind incisions, scalpels and suturing: this is not the case with the liberation procedure.
I hope my post will help in clarifying the issue.
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Postby Sport » Mon Oct 12, 2009 9:33 am

Call it what you want. It looks like surgery. It certainly feels like surgery. It is performed by a thoracic surgeon. The CPT code submitted by the hospital to the insurance company defines it as surgery. What more would you like?

Call it a rose if that makes you feel better.
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Postby Loobie » Mon Oct 12, 2009 11:08 am

Tell that to my shoulder!
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Postby LR1234 » Mon Oct 12, 2009 1:15 pm

I personally define anything that requires making holes in your body surgery!! (accept piercings of course!)
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