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Old 03-27-2008, 02:46 PM #1
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Shocked MS & Surgery

Has anyone here had surgery since being diagnosed with MS? How have you done? Any issues arise?

The reason I am asking is that I spoke to my neuros triage nurse this afternoon and the doc is worried about a possible exacerbation after I have this by-pass surgery done. He wants to coordinate with the surgeon to get me on either steroids or IVIG immediately following the surgery. I'm thinking..."WTF??" That makes it sound like the exacerbation is a given following a surgery??!!??

I had a major exacerbation last April and in the last month or so have finally realized a vast improvement in many areas, most especially my memory. This is one of those...durned if ya do...durned if you don't situations. I don't want another exacerbation! This one was a living H-ll. I don't want to have to take steroids again and I never have had IVIG and the only thing I know about it is it is expensive. (yeah yeah I know I can look up info on it and I will...) But I really have no choice in the surgery. If I don't have it I will continue to have unbearable pain when walking and risk having a stroke.

I hope someone out there has experienced surgery and has some advice for me. TIA!
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Old 03-27-2008, 03:32 PM #2
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I'm sorry you are in such a difficult place. The only surgery I've had since dx is a knee repaired. No problems, at all. It doesn't compare to a by-pass though.

Maybe your medical history causes the docs concern. I certainly wouldn't put off the surgery. Maybe a second opinion will help. Most insurances allow for one.

Sorry my advice is not exact. I just want you to know you are not alone. I'm sending healing hugs your way.

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Old 03-27-2008, 03:45 PM #3
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I haven't had any surgery, but I discussed my fears of a post-pregnancy exacerbation with my neuro. He recommended doing Imuran to knock down the potential for a rebound exacerbation. I haven't researched it much yet, but it might be worth a look as an alternative.
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Old 03-27-2008, 05:20 PM #4
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Quote:
Originally Posted by MsMesS View Post
Has anyone here had surgery since being diagnosed with MS? How have you done? Any issues arise?
I had major surgery soon after my dx, for adenomyosis (similar to endometriosis)

I needed to have a hysterectomy, and my ob-gyn first did a consult with my neuro, because she was concerned about giving spinal anaesthesia, as I have a plethora of lesions right in that spinal area where the anaesthetic would go.

also, my neuro pre-prescribed me a two-week course of oral steroids, as he felt that the surgery might precipitate an exacerbation, for me.

(this was back in the dark ages - 1992, and there was no IVSM or Imuran available.)

MS differs so widely between patients, that there's no way to guess what might be the case for you... and there has been so much research and new knowledge since then.

I did have a flare afterwards, but it was a small one, and over quickly, so I didn't even need the steroid course.

I wish you luck, and hope all goes well for you with your surgery.

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Old 03-27-2008, 06:56 PM #5
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I had major bowel surgery in September.

The anethetist was totally against spinal/epidural anesthesia because of MS, and I didn't want it either, knowing I had spinal lesions near the crucial area.

I did have an exacerbation after the surgery, but as I was in a hospital a long distance away from my neuro, I battled through it without steroid treatment. Luckily for me it was not a severe relapse, but combined with the surgery, it was debilitating for a while.

This is not the 1st surgery I've had since diagnosis, but it is the only one that I've had an exacerbation after. Like Kay, I had a hysterectomy without problems, and I've had several minor ops as well.

There are a few other members of the site who've also recently had major surgery. Hopefully you'll get some imput from them as well.
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Old 03-27-2008, 06:58 PM #6
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Jim had complete urostomy surgery and also went under for a cystoscopy. No problems at all but was he was watched closely by his spinal cord doctor who made all decisions regarding anything ms related.
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Old 03-27-2008, 07:09 PM #7
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I have had 2 c-sections (under a general), 1 oral surgery (I was put out) and surgery on my ankle - I shattered the bone (1 plate, 3 screws, 3 pins and wire to help tie it all together).

I never had a problem with my MS in any of those cases nor did I use anything to prevent an exacerbation.

Wishing you all the best with your surgery
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Old 03-27-2008, 10:34 PM #8
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Oh, TIA,

I am sorry you are facing surgery, even tho I know it is urgent.

I am 5 weeks out of hospital for surgery on my jaw, and still recovering
from the treatment I got there. I am glad that your Neuro is on board, it
should make any bumps in the road smoother to have someone who knows
about MS in your corner.

I was promised that everything was accounted for, but my meds were not
available, I couldn't bring my own. I had bladder problems (stress induced)and was cathed 3 times in five days. I could not get the floor staff to contact my Neurologist to explain about MS and bladder problems.

I was unable to get straight answers about the meds I was getting and
the treatment, clear liquid for 5 days, (about 100 calories per day) plus
the MS left me too weakend to walk. I fell and bounced my head on the
floor trying to get to the bathroom. I got a new wrist band saying "danger
of falling" and that was it. Not more help.

Please Please Please try to get your doctors to talk to each other about
your unique situation. The nurses and floor staff have to follow the orders
they get, if you have a special situation and if they don't get orders from
a DOC they will not listen to you.

Let my miserable experience be a warning, not a given. My Surgeon apparently doesn't "play well with others" and has a problem sharing or
accepting information from other Drs. I would go to the end of the earth
to avoid this again, and anyone else I can warn.

all the best, kami
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Old 03-28-2008, 07:57 AM #9
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Default post-partum exacerbation

During my pregnancy, my neuro. warned me that it was possible to have a flare up after the birth.

A month after my son was born, I got a major flare. It was a month-long attack and it was fatigue.

But if surgery is needed, take the surgery. Don't worry about the 'what-ifs' of a possible flare.

I wish you well!!

Niko
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Old 03-28-2008, 09:53 AM #10
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Quote:
Originally Posted by MsMesS View Post
Has anyone here had surgery since being diagnosed with MS? How have you done? Any issues arise?
MsMesS -

Yes. Fine. No. Short form...

Sounds like we have something in common. I had what was technically bypass surgery last week of the left common illiac artery (to the left leg), right common illiac artery (to the right leg), and the abdominal aortic artery (the Big one). It's called bypass. It really is, but I'd like to think of it as reinforcement. I had aneurysms. Also called blockages. I wish docs would get their terminologies consistent... Whatever... Bypasses - 8" big dude, 4" each on the illiacs.

I've had MS for over 20 years now. Do I qualify?

This surgery was a walk in the park for me. I had an ascending aortic dissection 4 years ago. Dissected right at the heart. That was serious surgery. Open heart - lower your body temp to 60 degrees, run your blood backwards thru your arteries/veins, mechanical lung and heart living for you...

Let me know what you're looking at and I'll tell ya what I know about it. I am, unfortunately, intimately familiar with vascular surgery procedures and techniques. The surgeon and I have become friends as we share mutual interests. We're constantly battling the same organization for funding - Congress. Me for NASA. Him for the NIH.

My MS is RR. I have exacerbations regularly - fall and spring. I don't recall a relapse after the Big One 4 years ago. I think I was too pre-occupied. This time, jury's still out. MS hasn't really been that big of a deal for me. I still live/work/play a normal life. This vascular stuff, however...

My surgery took a little less than 2 hours. I woke up about 30 minutes after surgery. I was walking with a walker the next day. Without a walker the day after. Solid foods after 3 days. Released from hospital morning of the fifth day.

Tom
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