Surgery Needed....Now what??

For everything and anything else not covered in the other RLS sections.
Post Reply
User avatar
Kimberly
Posts: 79
Joined: Wed Jul 20, 2005 3:06 am
Location: Columbus, Ohio

Surgery Needed....Now what??

Post by Kimberly »

I am going to be needing to have a lap. hysterectomy soon and am wondering if anyone has any tips/advice/suggestions for how to:

1) Pre-op - no eating or drinking for 12 hours when I am not even able to do fasting bloodwork.

2) Post-op - endure the recovery for someone like me, who's PLMW is so severe that the tics/jerking/required movement prevents the onset of sleep and absolutely requires rocking, walking, kicking, beating on legs, etc. to alleviate.

Those of you who've read my posts know that I literally look like I have Tourettes syndrome for @10 hours every night, sleep walk, sleep eat, and am barely surviving as it is...so how is it possible to recover from surgery? Seems I have 2 choices...find a way to remain completely knocked out for as long as possible after surgery, OR, once anesthesia wears off, plan to stay alert & awake enough to prevent onset of movement for as long as possible after surgery...meaning no pain/sleep inducing drugs. I will be using an On Q pain pump (local anesthetic), but even if the pain is mostly relieved, the severe movement may cause problems. Surely people with severe Parkinsons or Tourettes, even though they are able to sleep, have had to deal with the movement issue relative to surgery.

Also, when deciding whether or not to remove ovaries (family history of ovarian cancer), is there cause for concern that messing with my hormones is going to make WED worse (as if it could...).

Thanks, in advance, for any help!

EDIT TO ADD: Thank you so much for all the replies. I should clarify that, while my symptoms have progressed over 30 years to become so severe, I am on no longer on any meds for WED! After 10 years of use (and only minimal relief), I experienced horrible side affects and I am no longer able to take DAs. Even the best doctors I've seen and the many, many meds I've tried since then....yes, they 'drug' me up, but NONE stop or lessen the severity of the movement. As you can imagine...my worst nightmare will be the need to be restrained!!
Last edited by Kimberly on Tue Jun 12, 2012 5:36 pm, edited 1 time in total.

Polar Bear
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Surgery Needed....Now what??

Post by Polar Bear »

I had a hysterectomy at age 39 and don't know if this had any effect on my WED with regard to hormones. And It was at a time before WED medications were available.

I'd suggest speaking with your doc and anaesthetist, take a copy of the RLS medical bulletin from my link in my signature.

Also I'd pretty sure that the pain relief following surgery will go some way towards relieving your WED symptoms.

But I think discussion with the medical team is very necessary.

From my own point of vew----- I was supposed only to take the meds given by the medical team !!!
Don't think so!! I had a stash with me and used it.
Note: This is not a recommendation, just letting you know what I did.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

jy13131
Posts: 204
Joined: Wed Jan 14, 2009 4:39 pm

Re: Surgery Needed....Now what??

Post by jy13131 »

Yes the opiate meds will help! But not the local anesthetic. Do you take opiates now for WE'D?
jy13131

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Re: Surgery Needed....Now what??

Post by dogeyed »

Just as Polar Bear said, you'll need to talk to your doc about this for sure. When I had breast cancer surgery, I was told I could take my RLS & other meds with a little water in the morning. Also, hospital had a list of drugs I normally take, and I was given those at the right time after I got to my room. In any case, surgery normally requires opiates, and those kill the symptoms of RLS in most people.

By the by, when you get this surgery behind you, you may wish to talk to your RLS doc about upping whatever dose you're on, you should be kept in a state where you rarely have trouble with muscle tension. GG
"It's not how old you are; it's how awful you feel."

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Surgery Needed....Now what??

Post by rthom »

Kimberly

With regards to your surgery and hospital visit it is very important to let them know about the wed (stating the obvious), my experience is like yours and when I had my lung surgery I did not tell the anesthesiologist personally before the surgery and I had a lot of trouble during the transfer to the ICU. (I almost fell right off the stretcher, and the nurses didn't want to touch me because of all of the tubes in my chest and everywhere else) but needed to try to stabilize my body as I was not conscious but moving all over. As I've heard it, it would have been a comedy of errors to watch (wish I had the video). Once they got me in the icu they used the spinal tap and gave me paralytic drugs that stopped those movements immediately. Anyway the next time I had major surgery I told the anesthesiologist at the time of the surgery and he said he'd take good care of me and as far as I know he did just that--was the most serene surgery I ever had (had lots). There are a few different drugs they can use to put you under--he can maybe find a better one for your circumstance but he needs to know both before and at the time of the surgery (so he can have it there and remembers to use it).
My legs sound like yours--If i have to go to the emerg they put me in on a gurney so I don't offend or scare the others in the waiting room--so in the back I go in the hallway. It's fine by me at least I don't have to deal with the creepy looks.
Good luck with it. Try not to worry. :wink:

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Surgery Needed....Now what??

Post by ViewsAskew »

Seems like others know a lot more than I do and the advice to talk to the anesthesiologist seems wise.

I have strong PLMS and PLMW. The first time I had surgery before I had a lot of WED symptoms, I didn't say anything - I didn't know about the PLMS - just that the bed was a mess each morning. I had my wisdom teeth out. In the middle of the surgery, the doc awakened me terrified that I had epilepsy and was having a seizure. I groggily told him I had "jumpy legs" and that I was fine.

It didn't cause me any distress, but it definitely underscores how important it is to share early and share often.

My best friend had a hysterectomy recently; she has lupus and some other issues. She also gets violently ill when taking most opioids, so they had to know not to give her certain things, to make sure she did have other things and to give her a lower dose of anesthetic than they would normally give as it takes less to knock her out than others. We must have repeated ourselves to ten to twelve people. But, they got it right and she was fine. The first time (a different surgery - she had 3 procedures 4 in a row to determine if she needed the surgery, all required anesthesia), we didn't make sure everyone knew. We only told one of two people and thought everyone would know. It didn't get to the right people and she was sick for several days afterward.

It's like voting in Chicago - vote early, vote often. For this, it's share early and share often!

Oh, she was allowed to take her lupus meds, blood pressure meds, and anti-anxiety meds.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Surgery Needed....Now what??

Post by Betty/WV »

Everyone gave you good advice. Just to add to and tell you my experience. I had a heart catherezation and was given benedryl, even after I told them no. That it would exacerbate my WED/RLS. I suffered horribly for hours after. Thank goodness the most problem was in my left leg and the right groin is where they went in, but my leg had a mind of its own. It would just jump in the air. I swore that would never happen to me again. I emailed Dr. B and told him what happened. I carry a medical alert card for WED/RLS, everyone should. Dr. B. told me to give them the card and tell them I am allergic to all those medicines listed. And they better not give them to me. So, later I had a knee replacement and everything went well. I gave the nurse my med. alert card. The nurse was shocked and left the room with my card and came back with a red wrist band with all those drugs listed. Dr. B. said by telling them that I was allergic they would be very careful because of being afraid of being sued. But I had a wonderful surgeon, he was a true gentleman, he listened to me and was agreeable to all my wishes. Talk to everyone about your WED/RLS, nurses, of course the doctor, talk to the anethesiologist before the surgery, make sure he understands what meds you can and can't have. I did fine, I had the pump to and it kept the WED/RLS at bay. The medical community us becoming more aware of what WED/RLS is, so it is getting a little easier. And they gave me opiates to take after I went home, I really didn't have much trouble with the WED/RLS. JUst the long recovery from the surgery. Wish you the best and hope you don't have any problems.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Surgery Needed....Now what??

Post by Polar Bear »

I will use this existing thread as the title is with regard to surgery.

On next Monday I am due to have (very) minor surgery which will be partial nail avulsion on the outer side of each of my two big toenails.
They look fine at present - especially when painted in a fetching shade of pink... :)
However they are agonisingly painful when wearing a closed in shoe that is other than a trainer.

Every two months for the last 40 years I have paid a chiropodist/podiatrist to trim the sides back but it is soooooo.... difficult to get one who will take it back sufficiently for pain relief, never mind pain relief that will last for a couple of months. So I'm going for it. It involves removing about a quarter of the nail at the outer side right down to the nail bed and putting on caustic stuff that will kill that part of the nail bed. And after healing it should look ok cosmetically.

However, as both toes are being done at once and the appointment is for 90 minutes, I am going to have to be seated for the 90 minutes. Yikes !!! There will be a local anaesthetic for the pain but this will have no bearing on my WED symptoms. It looks like I will be having my usual meds plus a mighty dose of codeine. Oh... and my kindle to read so I don't see the ongoing pulling and tugging and the partial removal of the nails. Hmmm... I wonder can I resist not looking at it. I've looked at videos of the surgery on the internet and it isn't very comforting, but my concern is being confined and seated for the 90 minutes. Actually I think the removal will be wee buns compared to trying to be sedentary for the time involved.
:roll: :crazy: :wtf:
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Surgery Needed....Now what??

Post by Betty/WV »

The codeine should take care of the RLS/WED. Hope all goes well.
BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Surgery Needed....Now what??

Post by badnights »

Ask if they can set it up so that you can move one leg while they operate on the other. If you're like me, moving one helps with the grief in the other.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Post Reply