Wairoa

[wairoa36]

Hello. Always sensible informed help here. I always seem to need more. I have severe refractory RLS for decades, for which I take Methadone 20 mg daily for very little relief. Currently waiting for an appointment with a pain specialist as neurologist isn’t happy to increase my dose.

But I need your thoughts on another problem. I have a very leaky mitral valve which is incapacitating me badly. I can do very little. Walk with cane or walker. I am 88. I saw a heart surgeon today who is willing to give me a new valve with open heart surgery. I don’t care about the risks but the fear I have is hospitalisation with RLS. I have been in several hospitals where they want you to lie down. In an attack of RLS that is impossible. It is a nightmare. I am an old RN of over 50 years and hospital staff know zero about RLS. And don’t care. Do you think I would be so out of it I wouldn’t have RLS? It would be at least 2 weeks in hospital.

Your guidance please. I am so lucky you experts are so willing to help us all. Thank you from the bottom of my heart.

Waits

[Joolsg]

I am so sorry to hear this wairoa. Surgery is always a worry.You should ask for a meeting with the surgeon and the hospital team.

The anti nausea they use with the anaesthetic should be Zofran ( ondansetron) as this does not trigger RLS.

And ask them to make sure you are not restrained or restricted from walking.

If you have to lie down for long periods explain your situation and discuss a possible increase in methadone temporarily while you're in hospital.

They may have to adjust your pain relief to take account of the methadone.

Hopefully, the extra pain relief will help the RLS.

[SueJohnson]

Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you. Naloxone can affect anesthesia so tell them if taking. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS" And make sure your ferritin is high as surgery can cause blood loss making your ferritin go down. . RLS-UK also has advice under Useful Resources on their site.

Also after your surgery you need to withdraw slowly from any opioids they gave you or if they increase your methadone reduce slowly. You will have inflammation from the surgery which will make your RLS worse but it will go away.

[wairoa36 in reply to SueJohnson]

Many thx to you both for such detailed advice. You are amazing and so helpful.

[SkyCop in reply to wairoa36]

Sorry you are facing such challenges. I'm hoping your surgery and treatment go well. Just want to also say remember what Sue Johnson said about making sure your anesthesiologist & surgeon know you have RLS ... My surgeon told my husband he thought I might have an opioid addiction because I started kicking on the operating table.... But my husband is an anesthesiologist and knew that RLS people can do that if not properly managed during surgery. Btw I don't take opioids and it was pretty hurtful that the surgeon would assume that instead of educating himself about my underlying RLS condition. Keep us posted on how you are doing! 💜🙏

[Oscarcat63]

Hi ! Can you take someone with you to advocate for you ?

Perhaps you could meet with them before your appointment with the pain specialist or surgeon (preferably both) -

Like many, they probably will have little or no knowledge of rls - you can show them (your advocate) this site, and discuss your concerns with them, so that they are armed with the true knowledge of rls.

If you have no family or otherwise alone, there are quite a few non govt agencies who can help.

In the worst case scenario, you can ask for the hospital social worker and a nurse on your ward for help: I am sure they would not wish to see you suffer.

I hope everything goes well for you regardless.

Love from Tasmania

[Matmmhg7 in reply to Oscarcat63]

I just had surgery and made many copies of rls medical alert card. I handed one to everyone I delta with preparing me for surgery and everything went well.

[Oscarcat63 in reply to Matmmhg7]

That's excellent !🙂