Surgery and MS

[ActiveMSers]

Veronica, so stoked to hear you are doing well. After my accident, fatigue has been an issue and all of my MS symptoms have ramped (but no relapse or anything). Makes sense with your experience. Just part of the territory. Thanks for keeping us in the loop.

[Outdoorslover]

How about PPMS and surgery

In August I will have major surgery to remove some cancer in my small bowl region a few resections possible and a spot on my liver removed. I have PPMS and have never had a relapse does anyone have any experence with PPMS and surgery?

I really liked the suggestion of the hot blankets, some would be nice but lets not go over board.

[Suebee]

Outdoorslover, I'm sorry to hear about your upcoming surgery. I think the biggest precaution one can take is to protect your lungs from pneumonia. Nurses and aides don't always have this on their mind. If allowed, you want the head of your bed 30 degrees up and definitely up at meals and at least 20 min after. You want to do deep breathing and coughing exercises that they can instruct you to do safely. Keep pain control adequate so you can get mobile asap. Veronica is a great example of how early and often PT furthers the recovery. I didn't have PT immediately and it was only 2 x a wk. I haven't got back to the same level of strength, and it's over a year now. Most importantly, be your strongest advocate and know we are out here "virtually" cheering you on. Suebee

[Outdoorslover]

Thank you for the great advice!

[girl1dir]

Late to the party

Hey all! This is a great thread. Thank you for your real life experiences!

I am considering an elective surgery. I have had RRMS for about 2.5 years. I haven't ever had a relapse. I am happily controlled on Aubagio. No new lesions for 2 years.

At 42 years old, I've married for 20, and opted out of making babies about 17 years ago. I have been on some form of hormonal birth control since I was 18 years old. I'm done. Sooooo DONE! Aunt Flo is a wretched bitch when it comes to her visiting. It's 10-13 days of complete misery. I'm over it. MORE than over it.
Goal: Stop Aunt Flow from visiting ever again.

My options presented today by the OB/GYN are 1. Hysterectomy - 4 weeks expected recovery. One less daily pill. Never again does Aunt Flo unpack for a visit. No accidental pregnancy.

or

2. Stay on the pill, don't skip the week off (I have been doing this for about 18 years). Requires a medication in my list of meds and if I ever forget and go off and have sex with my husband have a potential to get pregnant... and if you know me, you know what happens next.

Having never had a relapse, I don't truly understand what it is.
Do I want to chance having a relapse?
Do I want to stay on hormonal birth control for another 10 - 15 years on top of my MS meds?

Ahhhhh!!!!! #CalgonTakeMeAway

Has anyone else made a decision like this? I'm freaked out.

[Suebee]

Girl1,
Trust your doctor, but verify it's best approach for you. Unfortunately, I have found few GYN/ obs are really familiar with how birth control, pregnancy, birth, pregnancy, and menopause are best managed for MS patients.

I see it as three issues: what is effect on MS for 1) stopping long time use of birthcontrol pills; 2) elective surgery/ impact of anesthesia; and 3) induction of menopause?

Unfortunately, I think all three have been implicated in worsening of MS symptoms.

With regard to anesthesia, I had required surgery over 2 years ago and although I didn't have an acute flair afterwards, I lost a lot of strength and endurance that I never regained.

With regard to menopause ---No surprise, there are few studies on how menopause effects MS, BUT it is known that there is a statistically significant increase in worsening of MS symptoms, likely due to reduction of estrogen.

Most significantly for your purposes, at least one study found hysterectomies worsened MS symptoms more than natural menopause!
"To explore the impact of menopause on MS symptoms, Bove and her colleagues surveyed 513 women with MS using an online research platform. Of those women, 53 percent were postmenopausal. Those who'd had surgically-induced menopause (removal of the ovaries) reported having more severe MS symptoms than the premenopausal women or the women who'd gone through menopause naturally. Surgical menopause happened at a younger age than natural menopause and was associated with higher rates of hormone replacement therapy. The results of the survey were published in January 2015 in Multiple Sclerosis and Related Disorders.
excerpt from https://www.everydayhealth.com/multi...women-with-ms/
Good luck Girl1 and always be an advocate for you!

[girl1dir]

Thanks SueBee!

I am my best healthcare advocate -- we found my MS 7 days after being admitted to the hospital for steroids. The one and only "relapse" I have had was Optic Neuritis that helped us find the lesions in my brain. =) I'm a bit of a "Poke the Bear" kind of girl.

We have decided to stay on the pill. We weighed the options, risks, acceptable and unacceptable unknowns - and while I am so incredibly tired of taking the pill, we're going with the "if it ain't broke, don't fix it" philosophy.

FYI: In my case we would be leaving the ovaries so it would be a partial hysterectomy.

There we have it. Status Quo until there is a medical reason to do something else.

[Marinadca]

Hi Girl1

Is Mirena or something similar an option for you?

I was on the pill and skipped the off week on and off for over 10 years before I gave up and got the Mirena. No period at all after getting it. Regarding IUDs in general - I have heard that Paragard can cause longer period.

[girl1dir]

Hi Girl1

Is Mirena or something similar an option for you?

I was on the pill and skipped the off week on and off for over 10 years before I gave up and got the Mirena. No period at all after getting it. Regarding IUDs in general - I have heard that Paragard can cause longer period.

Nope. IUD isn't an option. Too small of a cervix. They also usually have some hormones to go with them which I would like to get away from.

I have been skipping the off week for about 18 years.

The risks that go along with elective surgery, the out of work time, the recovery time, the possibility of having a relapse when I haven't ever had one are too much for us accept at this time. We have opted to stay on the pill. :'(