Surgery & RLS: Brochure Survey
We are planning to create a brochure for patients discussing surgery & RLS. However, we want your feedback!
If you were planning on having a surgery (for a condition other than RLS), what things would you like to know about?
Please write down what questions or concerns you would have if you, as a person living with RLS, knew that you were going to go through surgery. The following topics may spark some ideas:
1. Preparing for Surgery
2. Your Medications (before, during, after surgery; interactions)
3. Anesthesia
4. Pain Management
5. Recovery Period (needing to move because of RLS vs. resting)
THE RLS FOUNDATION WANTS YOUR FEEDBACK!!!!
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wkitsteiner
- Posts: 77
- Joined: Thu Oct 14, 2004 1:31 pm
- Location: Rochester, MN
- Contact:
Thank YOu
Hi And Thank you for this post.
Having had several things or procedures in the last couple of months I certainly have ideas.
1. Preparing for surgery......
a. Talk to your doc about your RLS and take in a medical alert card for him to look over. Not all doctors will or are willing to listen to everything we tell them, but push the fact you have RLS.
2. Medications.....
a. most medications can not be taken the day of surgery, unless it has been cleared with the doc and or the anesthesia person. Mine said if I needed them to be sure to take them with a little water as possible and to alert him about taking them. He also knew that the timing of the next regular dose would come while I was in recovery and offered to make it available to me there.
b. I'm thinking I read somewhere that some of the dopamine medications don't mix well with other medications. Please Ask Dr. B about this being a problem. I'm thinking he might very well know the answer.
3. Anesthesia.........
a. Ask to speak to the anesthesia person before your surgery. This was one of the most helpful things that happened for me. After I alerted him that I may be moving as a result of the RLS or the medications commonly use in surgery, he took it upon himself to research RLS himself and it was wonderful. He knew that I might move after the sediation and he was aware of what might be needed to help with that.
b. I also made the nurse aware of my RLS. The anesthesia guy made sure the recovery nurses knew that my movements were likely caused by RLS or PLMD, not aggitation. This was a great thing for them to know. He told them to let me move as needed.
4. Pain mangaement... this is not something widely available for many of our community on a regular basis. (most doctors hate this subject and will offer as little as possible)
a.I didn't want any problems with pain medications being given by two different doctors, on their records or mine. Since I take a pain medication as a daily treatment, I asked my RLS doctor to cover my pain medication needs after the surgery. This was a great idea. He already knew what it would take (dose) to be of help to me and he knew what I would required to be in bed for some days after the surgery. He covered it all for me.
This is one of the most important things we need more help with in the medical community.
Most of the time when you have surgery or big dental work, we're likely to hear, "you need to rest and take it easy for a couple, several days". As a RLS sufferer, I wish I could do that easily, but I cannot. I did required extra medications for just this reason. I'd like to see some of our own doctors in this community help spread the word about why it's important to cover us, if we need the help to relax for recovery.
Love it Thank you for asking.......Anyone else?
Having had several things or procedures in the last couple of months I certainly have ideas.
1. Preparing for surgery......
a. Talk to your doc about your RLS and take in a medical alert card for him to look over. Not all doctors will or are willing to listen to everything we tell them, but push the fact you have RLS.
2. Medications.....
a. most medications can not be taken the day of surgery, unless it has been cleared with the doc and or the anesthesia person. Mine said if I needed them to be sure to take them with a little water as possible and to alert him about taking them. He also knew that the timing of the next regular dose would come while I was in recovery and offered to make it available to me there.
b. I'm thinking I read somewhere that some of the dopamine medications don't mix well with other medications. Please Ask Dr. B about this being a problem. I'm thinking he might very well know the answer.
3. Anesthesia.........
a. Ask to speak to the anesthesia person before your surgery. This was one of the most helpful things that happened for me. After I alerted him that I may be moving as a result of the RLS or the medications commonly use in surgery, he took it upon himself to research RLS himself and it was wonderful. He knew that I might move after the sediation and he was aware of what might be needed to help with that.
b. I also made the nurse aware of my RLS. The anesthesia guy made sure the recovery nurses knew that my movements were likely caused by RLS or PLMD, not aggitation. This was a great thing for them to know. He told them to let me move as needed.
4. Pain mangaement... this is not something widely available for many of our community on a regular basis. (most doctors hate this subject and will offer as little as possible)
a.I didn't want any problems with pain medications being given by two different doctors, on their records or mine. Since I take a pain medication as a daily treatment, I asked my RLS doctor to cover my pain medication needs after the surgery. This was a great idea. He already knew what it would take (dose) to be of help to me and he knew what I would required to be in bed for some days after the surgery. He covered it all for me.
This is one of the most important things we need more help with in the medical community.
Most of the time when you have surgery or big dental work, we're likely to hear, "you need to rest and take it easy for a couple, several days". As a RLS sufferer, I wish I could do that easily, but I cannot. I did required extra medications for just this reason. I'd like to see some of our own doctors in this community help spread the word about why it's important to cover us, if we need the help to relax for recovery.
Love it Thank you for asking.......Anyone else?
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Lovechild
Everything that you guys said is all I can think of. Especially, telling your doctor you have rls and talking to him/her about it and making sure that they provide you with your rls meds. Going through surgery is hard enough. The last thing that we need is to have to deal with our rls at the time.
Jamie
Jamie
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Susie
Total Knee Replacement
I had a total right knee replacement on Halloween 
2005.
Beforehand I informed my operating surgeon that I have RLS and didn't know how it would impact the surgery or how the surgery would impact the RLS.
His response was that he didn't know anything about RLS. His office nurse said neither she or her boss knew anything about RLS.
I had the surgery and don't remember much about the four days I was in the hospital. I got a copy of my chart for that time period and note that several mentions were made that I was VERY anxious. I don't know if that was during the surgery or after I returned to my room.
I was taking only Clonazapam prior to the time of the surgery.
Three weeks following the surgery I started having what I refer to as "hard flinches" only in my operated leg.
My primary care doctor has been trying to help me resolve these painful (especially with a recovering knee) happenings. Like RLS, it has been very hard to explain what is going on with my leg. After getting into a rest mode (lying on the couch or in bed) I get these movements in my operated leg....it is like a combination of an electrical jolt, a muscle spasm, an instant flinching of the leg. I can put my hand on the calf below the knee and feel the movement of muscles and/or nerve action.
My primary care doctor has had me on several trial courses of Requip. He also put me on Quinine 325 mg once at night (I have been told by many that this won't help). I have been on Clonazepam for several years. I started it along with Mirapex but couldn't afford the Mirapex so I have been moving along with the Clonazepam. My doctor monitors this and if I am "hooked" on it, I have no clue what physical/mental traits would be exhibiting themselves.
If the Requip is working, it is only early on after I get into a rest mode. In the very early morning I get the leg movements described above. Once recently I had nearly 20 of them within two minutes! Almost like a fireworks show! Another recent morning I had just one huge one and with that, I jumped out of bed and stood up...no more problems.
I am ready to try something else and many folks have recommendations, from back on Mirapex to Neutronin to Ultram.
My primary care doctor has been very generous giving me Hydrocodone/APAP 7.5/325. I believe this is Vicodin, but I am not sure. He gave this to me long after my operating surgeon took me off all pain meds within a month after my TKR.
I have a very full bottle of these pain killers. This is because after I got the last script, I noticed that I was itching. When I first took Hydrocodine/APAP I noticed my chin area itched. Then my nose joined in. Now if I take two of them at a time I have all of the above plus itching around my neck and chest. At that point I decided the pain killers were worse than the leg pain, so I have quit taking them, although it was recommended to me that it would help to continue them. I will try again in a week or so, just one at bedtime.
So, I guess I didn't get hooked on pain killers...at least not yet.
My points are: (1) find a surgeon who isn't so busy with surgery clients that he doesn't have time to work with you regarding RLS and (2) try to find out what the RLS might do after the surgery and how it will be treated.
About during surgery, as I mentioned, I have little recollection of my time in the hospital. My primary care doc said this is probably because of the morphine etc. I got. That is NASTY stuff, folks, but a necessity for some surgeries.
Would someone please let me know if this post got to anyone?
Susan Davis
Rogue River, Oregon
"Keep your knees loose" as one TV commentator says at the end of each show! I agree!
2005.
Beforehand I informed my operating surgeon that I have RLS and didn't know how it would impact the surgery or how the surgery would impact the RLS.
His response was that he didn't know anything about RLS. His office nurse said neither she or her boss knew anything about RLS.
I had the surgery and don't remember much about the four days I was in the hospital. I got a copy of my chart for that time period and note that several mentions were made that I was VERY anxious. I don't know if that was during the surgery or after I returned to my room.
I was taking only Clonazapam prior to the time of the surgery.
Three weeks following the surgery I started having what I refer to as "hard flinches" only in my operated leg.
My primary care doctor has been trying to help me resolve these painful (especially with a recovering knee) happenings. Like RLS, it has been very hard to explain what is going on with my leg. After getting into a rest mode (lying on the couch or in bed) I get these movements in my operated leg....it is like a combination of an electrical jolt, a muscle spasm, an instant flinching of the leg. I can put my hand on the calf below the knee and feel the movement of muscles and/or nerve action.
My primary care doctor has had me on several trial courses of Requip. He also put me on Quinine 325 mg once at night (I have been told by many that this won't help). I have been on Clonazepam for several years. I started it along with Mirapex but couldn't afford the Mirapex so I have been moving along with the Clonazepam. My doctor monitors this and if I am "hooked" on it, I have no clue what physical/mental traits would be exhibiting themselves.
If the Requip is working, it is only early on after I get into a rest mode. In the very early morning I get the leg movements described above. Once recently I had nearly 20 of them within two minutes! Almost like a fireworks show! Another recent morning I had just one huge one and with that, I jumped out of bed and stood up...no more problems.
I am ready to try something else and many folks have recommendations, from back on Mirapex to Neutronin to Ultram.
My primary care doctor has been very generous giving me Hydrocodone/APAP 7.5/325. I believe this is Vicodin, but I am not sure. He gave this to me long after my operating surgeon took me off all pain meds within a month after my TKR.
I have a very full bottle of these pain killers. This is because after I got the last script, I noticed that I was itching. When I first took Hydrocodine/APAP I noticed my chin area itched. Then my nose joined in. Now if I take two of them at a time I have all of the above plus itching around my neck and chest. At that point I decided the pain killers were worse than the leg pain, so I have quit taking them, although it was recommended to me that it would help to continue them. I will try again in a week or so, just one at bedtime.
So, I guess I didn't get hooked on pain killers...at least not yet.
My points are: (1) find a surgeon who isn't so busy with surgery clients that he doesn't have time to work with you regarding RLS and (2) try to find out what the RLS might do after the surgery and how it will be treated.
About during surgery, as I mentioned, I have little recollection of my time in the hospital. My primary care doc said this is probably because of the morphine etc. I got. That is NASTY stuff, folks, but a necessity for some surgeries.
Would someone please let me know if this post got to anyone?
Susan Davis
Rogue River, Oregon
"Keep your knees loose" as one TV commentator says at the end of each show! I agree!
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ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
I can see your post, so I know it is here. The Foundation staff check this frequently, so I am sure that they will read it.
Susie, what a harrowing experience. Thank you for sharing it with the Foundation (and with us on the board). I am sure that this will help someone else so that they do not have to go through what you did.
Ann
Susie, what a harrowing experience. Thank you for sharing it with the Foundation (and with us on the board). I am sure that this will help someone else so that they do not have to go through what you did.
Ann
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.
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.
You all had great suggestions and I really have nothing to add except one thing.
I recently had a heart cath. Having gone through surgery before and experiencing many of the things you mentioned, Becat and Susie, I made sure that I gave a medical alert card to the nurses on the cardiac floor and in the heart cath lab. You know, it's the card that lists all the medications we ARE NOT supposed to take because they exacerbate our RLS.
To make a long story short (at least, I'll try), the nurses' station had a copy of the medical alert card put into my chart, as did the heart cath lab. However, when the heart cath procedure was starting, the nurse who was administering the meds into my IV was explaining what she was doing. When she said "I'm not going to put Benadryl into your IV" I almost jumped off the cart. I said, "NO!" and told her that I couldn't take it and I had given a copy of the medical alert card to the heart cath lab nurses. She then shouted "Can she have Benadryl?" And, they shouted back "Oh, no...... she can't!" She said "WHEW! Glad you told me." And, of course, I told her that if she had given me Benadryl, they wouldn't have been able to proceed with the heart cath because I would have been jumping around on the cart.
My point is: Even though you GIVE a copy of your medical alert card to everyone, don't assume that they will REMEMBER or READ your chart. When I had gall bladder surgery a couple of years ago, the anesthesologist, during pre-op, had the nurses give me Benadryl, Vistaril and Reglan, even though I told them I had RLS (I didn't have a copy of the medical alert card with me). When I started moving my legs and didn't dose off, he had them give me more--two more times. I ended up having to be walked up and down the hallway for an hour, a nurse on both sides, before they could take me into surgery, because my legs were going wild.
OOOPS! I went much longer than I intended.
I always flinch when I think of having to go in for tests (when I'll have to lie still for a while) or for surgery! It's just tons of fun for us, isn't it?
Jan
I recently had a heart cath. Having gone through surgery before and experiencing many of the things you mentioned, Becat and Susie, I made sure that I gave a medical alert card to the nurses on the cardiac floor and in the heart cath lab. You know, it's the card that lists all the medications we ARE NOT supposed to take because they exacerbate our RLS.
To make a long story short (at least, I'll try), the nurses' station had a copy of the medical alert card put into my chart, as did the heart cath lab. However, when the heart cath procedure was starting, the nurse who was administering the meds into my IV was explaining what she was doing. When she said "I'm not going to put Benadryl into your IV" I almost jumped off the cart. I said, "NO!" and told her that I couldn't take it and I had given a copy of the medical alert card to the heart cath lab nurses. She then shouted "Can she have Benadryl?" And, they shouted back "Oh, no...... she can't!" She said "WHEW! Glad you told me." And, of course, I told her that if she had given me Benadryl, they wouldn't have been able to proceed with the heart cath because I would have been jumping around on the cart.
My point is: Even though you GIVE a copy of your medical alert card to everyone, don't assume that they will REMEMBER or READ your chart. When I had gall bladder surgery a couple of years ago, the anesthesologist, during pre-op, had the nurses give me Benadryl, Vistaril and Reglan, even though I told them I had RLS (I didn't have a copy of the medical alert card with me). When I started moving my legs and didn't dose off, he had them give me more--two more times. I ended up having to be walked up and down the hallway for an hour, a nurse on both sides, before they could take me into surgery, because my legs were going wild.
OOOPS! I went much longer than I intended.
I always flinch when I think of having to go in for tests (when I'll have to lie still for a while) or for surgery! It's just tons of fun for us, isn't it?
Jan
No one is alone who had friends.
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wkitsteiner
- Posts: 77
- Joined: Thu Oct 14, 2004 1:31 pm
- Location: Rochester, MN
- Contact:
Thanks
We are reading your suggestions! Keep them coming.
Wendi Kitsteiner
RLS Foundation
Wendi Kitsteiner
RLS Foundation
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cornelia
I live in Europe, where you have to share a room with others in the hospital, unless you have a lot of money. Don't know how that is in the USA. But for me it is an absolute MUST NOT to share a room with ANYONE.
Because of RLS I suffer from chronic fatigue and I couldn't stand having to chat with other people, because I have just no energy for that.
Corrie
Because of RLS I suffer from chronic fatigue and I couldn't stand having to chat with other people, because I have just no energy for that.
Corrie
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RonK
RLS & PLMD and Cataract Surgery - Preparation!
I just went through surgery (cataract). The postings I read are "right on!". I told everyone that I had RLS and PLMD, and how these affect me, even though I am taking medications that mediates these, I still have periodic problems. It worked out GREAT. The surgeon, the anestologist, nurses, everyone involved knew my conditions. They were prepared. Cataract surgery is very delicate surgery - to say the least! 
I did not go under general anestology. However, the surgeon and anestologist were ready to go there if my legs showed any signs of movement, and I was awake and aware - part of the time- and was to tell the surgeon (raise my right hand!) if I began to feel as if I was going to have leg movement - jerking because I usually have a feeling (as if RLS and PLMD are saying "here we come"!). Thus, I could possibly let the surgeon know! It went well thanks to all the preparation. So my advice is preparation, preparation, preparation with everyone involved in your surgery.
RonK 64 in Virginia
I did not go under general anestology. However, the surgeon and anestologist were ready to go there if my legs showed any signs of movement, and I was awake and aware - part of the time- and was to tell the surgeon (raise my right hand!) if I began to feel as if I was going to have leg movement - jerking because I usually have a feeling (as if RLS and PLMD are saying "here we come"!). Thus, I could possibly let the surgeon know! It went well thanks to all the preparation. So my advice is preparation, preparation, preparation with everyone involved in your surgery.
RonK 64 in Virginia
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ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Here's what I would want to know:
1. Preparing for Surgery
Do I need to stop my current meds? If so, what could I take instead? Also, how can I convince my doctors how important this is to me? Who do I tell? What is the best way to communicate this to them?
2. Your Medications (before, during, after surgery; interactions)
Oops, I already answered part of that above. But, definitely more. . . What side effects would the surgery have that might affect the medications I take? Would any of the medication needed for the surgery interfere with my meds - or maybe reduce their effectiveness.
3. Anesthesia
Mostly concerned about how to make sure everyone listens to me. How do I make sure they know this is a big deal.
4. Pain Management
How would I handle pain medication since I already am on an opioid - I hate to think I'd get short-shrifted!
5. Recovery Period (needing to move because of RLS vs. resting)
How can you either medicate me so I won't have RLS or how can you let me move around without me jeopardizing the surgery? This really is crucial and I, again, would be most concerned that too many doctors wouldn't understand how great a need walking can be. Some surgeries make it tough to walk immediately - hip replacement for example. They have to account for the possibility that I will get RLS and have an action plan in place. So, I guess I just would want to know what that action plan is and how they plan to ensure I'd not need to spend nights going crazy instead of sleeping and recovering.
1. Preparing for Surgery
Do I need to stop my current meds? If so, what could I take instead? Also, how can I convince my doctors how important this is to me? Who do I tell? What is the best way to communicate this to them?
2. Your Medications (before, during, after surgery; interactions)
Oops, I already answered part of that above. But, definitely more. . . What side effects would the surgery have that might affect the medications I take? Would any of the medication needed for the surgery interfere with my meds - or maybe reduce their effectiveness.
3. Anesthesia
Mostly concerned about how to make sure everyone listens to me. How do I make sure they know this is a big deal.
4. Pain Management
How would I handle pain medication since I already am on an opioid - I hate to think I'd get short-shrifted!
5. Recovery Period (needing to move because of RLS vs. resting)
How can you either medicate me so I won't have RLS or how can you let me move around without me jeopardizing the surgery? This really is crucial and I, again, would be most concerned that too many doctors wouldn't understand how great a need walking can be. Some surgeries make it tough to walk immediately - hip replacement for example. They have to account for the possibility that I will get RLS and have an action plan in place. So, I guess I just would want to know what that action plan is and how they plan to ensure I'd not need to spend nights going crazy instead of sleeping and recovering.
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.
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.
It's not just trips to hospital for surgery that we should be concetrating on ... but also long stints in hospital for serious illnesses such as pneumonia.
I spent 10 very, very long days in hospital around this time last year with a particularly nasty bout of viral & bacterial pneumonia.
Of course, I was already on a cocktail of drugs to keep my RLS under control, but the minute I stepped through the hospital doors, they were taken away from me and literally kept under lock and key. I eventually had to ask my (then) husband to buy OTC painkillers (codeine based) so I could simply stay sane!
EDUCATION AND AWARENESS are the two key points i'l like to see put across to hospital staff. Particularly the nurses as they're the ones who see us 24/7. It's all well and good for your own GP to rock in first thing in the morning, take one look at you and say "rough night huh?" knowing exactly what you've gone through, only to have the nurses stare blankly at both of us.
Trying to explain the concept of RLS to some nursing staff was like talking to a brick wall. When I say I need certain medication at certain times and my GP signs my chart confirming it, I don't want to be lying there nearly 2 hours later on the verge of utter madness!!! It's HELL!!!
If a patient is "with it" enough to know what their normal drug routine is for an ongoing condition there should be some sort of agreement that can be put in to place between GP, nursing staff and patient, where the patient is allowed access to their RLS medication at any given time of the day or night. This way, those of us under control who suddenly find ourselves out of control would not be spending torturous hours waiting for someone with the key to the drug cabinet.
When I was finally mobile again, I literally wore a path in the carpet of the hallways of the hospital in the late hours of the night. Being sick was bad enough, but unnecessary RLS attacks through sheer laziness of nursing staff is another thing altogether. My mobile phone bill was through the roof that month from sending text messages to my friends as I paced the hall (with I.V. in tow!).
OK, I think i'll shuddup there.
I spent 10 very, very long days in hospital around this time last year with a particularly nasty bout of viral & bacterial pneumonia.
Of course, I was already on a cocktail of drugs to keep my RLS under control, but the minute I stepped through the hospital doors, they were taken away from me and literally kept under lock and key. I eventually had to ask my (then) husband to buy OTC painkillers (codeine based) so I could simply stay sane!
EDUCATION AND AWARENESS are the two key points i'l like to see put across to hospital staff. Particularly the nurses as they're the ones who see us 24/7. It's all well and good for your own GP to rock in first thing in the morning, take one look at you and say "rough night huh?" knowing exactly what you've gone through, only to have the nurses stare blankly at both of us.
Trying to explain the concept of RLS to some nursing staff was like talking to a brick wall. When I say I need certain medication at certain times and my GP signs my chart confirming it, I don't want to be lying there nearly 2 hours later on the verge of utter madness!!! It's HELL!!!
If a patient is "with it" enough to know what their normal drug routine is for an ongoing condition there should be some sort of agreement that can be put in to place between GP, nursing staff and patient, where the patient is allowed access to their RLS medication at any given time of the day or night. This way, those of us under control who suddenly find ourselves out of control would not be spending torturous hours waiting for someone with the key to the drug cabinet.
When I was finally mobile again, I literally wore a path in the carpet of the hallways of the hospital in the late hours of the night. Being sick was bad enough, but unnecessary RLS attacks through sheer laziness of nursing staff is another thing altogether. My mobile phone bill was through the roof that month from sending text messages to my friends as I paced the hall (with I.V. in tow!).
OK, I think i'll shuddup there.
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!