<p>So my mom got diagnosed with R/A in '97 I think (so I was 7 years old). It was hard for me then, and normally it’s not really a problem because it has just become “normal” for my house.</p>
<p>But she just started going to the R/A doctor again (loooong story) and they think she’s going to have to have surgery on her hands. And I’m scared witless…I’m sitting here with tears in my eyes. 
Anyone have any suggestions of ways for me to cope with this?</p>
<p>Sorry to hear that HGFM. Surgery is probably being recommended to relieve her pain and improve her hand functions. Are you afraid of the surgery she will be going through? Are you afraid for her? have you talked to her about your anxiety? I don’t know much about the surgery, or the success rate, but it would be a good idea to tell her how you are feeling.</p>
<p>Do not worry- hand surgery is no big deal in the medical world, anesthesiologists and surgeons deal with it often and with patients with RA. Your CC name suggests you are religious, therefore you may look to your religious group for support. It is easy to be afraid about things you have no knowledge of, you may want to find out more details to reassure yourself. Also, parents are supposed to always be there for us, they are not supposed to change so your world has been upset. The hand surgery would only make things better for her, easing pain/mobility- so look at the positive aspects of this for her.</p>
<p>I haven’t talked to her yet, but I most likely will…</p>
<p>I think I’m more scared of something going wrong because my mom is my best friend and I don’t know what would happen if something went wrong.</p>
<p>I know it’s unlikely because it’s only on her hands, but still…</p>
<p>Also, I think a lot of it is that the only other experience I’ve had with surgery was when my brother got hit badly with Crohn’s Disease in '00 and had to have 6" of his small intestines removed. That’s probably a lot of it.</p>
<p>Thanks for the advice. <3</p>
<p>Certainly you are worried because you love your mom so. It is always a small percentage risk to go under anesthesia but you can be sure that the anesthesiologist will be standing right there next to your mom and the surgeon for the operation.
They will consider her weight and other health matters on a very individual basis to decide which kind of anesthetic to give her. </p>
<p>She will have doctors and nurses near her constantly.</p>
<p>Perhaps you can go in with her right up into the preparation room until they actually wheel her away for the surgery. If you are in the hospital, they can give you progress reports if you are sitting there in a waiting room (ask you mom to set this up). If you are in a different town, you can still have someone ready to talk with you by phone to keep you up-to-date through the day. Or you can phone the nurse’s station, identify yourself as the daughter and ask for news. (again, have mom set it up in advance to put down your name as someone they can talk to by phone – privacy laws are in place so she has to “name” you in writing to discuss).</p>
<p>If you can help your mom with the weeks of recovery, for example cooking her meals or helping by doing house chores so she can rest, you will actually help her recover better. But if she’d rather you stay put and do your college work, well, then do that, because she’ll feel good knowing you are doing what you need to do. </p>
<p>When I had major surgery, my best support (after my H) was my college-age daughter. At one point she told me I was “very brave” and that moved me deeply, as I hadn’t pictured myself that way.</p>
<p>Later she drew a picture about her feelings and gave it to me, a very precious thing from her. </p>
<p>Can you ask her what she knows about her surgery, such as: how many days in the hospital; how many weeks to recover; what is the probability of success and how does “success” look (for example, even if her hands look different they might not hurt as badly, so she’ll be that much happier).</p>
<p>She’s probably been using a lot of medicine for the pain. Surgery is usually the last choice after everything else has been tried, so I’m sure she thought it over very carefully before agreeing to it. Ask her to share some of that with you. Tell her you care and you’re old enough to share and console her now.</p>
<p>She might not want to burden you, but let her know that it’s more of a burden to be in the dark. The more you know, the better you will both feel. </p>
<p>Be glad that there IS a surgery that might help her! RA is very painful to endure. My aunt had a hand surgery and while it looked bad to me afterwards, she felt better and that’s what counts. For example, she could hold a pencil again and write a grocery list! Those things improve one’s quality of life.</p>
<p>That was a GREAT post…thank you so much!!</p>
<p>I’m actually a senior in HS XD, but I get what your point is.</p>
<p>My mom actually just sent an e-mail to most of our family with some great info about the different issues she has, so that helped a bit.</p>
<p>Also, I think part of the reason she has to get surgery is because all she’s been taking is motrin (it’s a long story, but in a nutshell she became addicted to Oxycontin and went through heck and back and is never going back to narcotics…she’ll probably end up on Methotrexate to help her).</p>
<p>Again, thank you so much for the great post. I’ll probably talk to my mom about it in the next few days, as I don’t think the surgery is coming up for a few weeks (maybe even months).</p>
<p>FYI - I don’t know about RA joint replacement, but many forms of hand surgery can be done with a nerve block to the arm, and then a light sedation for the patient, so they don’t have to use general anesthesia. </p>
<p>My mom had RA really, really bad, and her hands were enormously crippled - she had all kinds of adaptive equipment to help her with daily tasks, including having my father create some kind of contraption for her key ring because she could hardly start the car holding onto just the key. She did eventually elect for knee replacement - the recovery was long and painful, but she was glad she did it. </p>
<p>I feel for her - it’s a hard battle to fight.</p>
<p>I have had RA since I was a teenager. Like your mom, I tried to control for years with OTC medication like Motrin and Aleve. About five years ago, my knees started to lock at a 90 degree angle. At first it was only for a few minutes, then for several hours, and eventually for days on end. I broke down and have been on a combination of methotrexate and prednisone. It has not happened again since I started the MTX. To be honest, it has not been fun. In the beginning, I got terrible nausea, headaches, and fatigue in the 24 to 48 hours following my weekly dose of MTX. But it was worth it to be able to function the rest of the week. Lately, I have been experiencing a lot more pain and daily fatigue and have recently started humira. I thought giving myself an injection would be impossible (I hate needles), but it wasn’t too bad and in my case the relief was within hours. I am so glad that I decided to try the humira. It doesn’t work that well for everyone and there is a greater risk of infection, but for me being close to normal and active for the first time in years has been amazing. I know there are a few things I wish my family would do for me when I have a flare, but I know it is hard for them too. I am sure you mom’s hands hurt all the time. Ask her if she would like a gentle massage. It feels great and is very therapeutic. A foot massage would also likely be quite welcomed. Do dishes for her when you can or help with the housework. Interestingly, humira is also used to treat Chrohn’s and I think recent studies have shown a genetic correlation between the two diseases. Just so you know, I have had RA for 40 years, raised two kids, and worked full-time throughout. Not tooting my own horn, just saying you learn to adjust. Best to your mom.</p>
<p>HGFM: My H is a Rheumatologist. He is actively involved in research and knows all the really great Rheumatologists throughout California and the US. There are several new, fabulous biologics made available in the past few years that have made huge inroads with RA. Hopefully, your mom is being seen by a Rheumatologist that is current on the latest treatment for RA. I see you live in Lakewood/LB. We are in Rossmoor/Seal Beach so we are neighbors. PM me and let me know who she sees for her RA and where she gets her care. I might be able to give you some names to share with your mom. RA is a nasty disease and for many years there were no new drugs, but the last several years has shown amazing developments. There is hope. </p>
<p>Interesting that your brother has Crohn’s. One of the new biologics used for RA is used for Crohn’s too. </p>
<p>Take care and hang in there.</p>
<p>^Yeah, they told my brother when he was diagnosed in 2000 that it was possible there was a link between the two because (if I’m not mistaken) it’s the same type of disease.</p>
<p>Thank you so much for all of your helpful information, guys. unsoccer-mom, I actually do give my mom foot massages every once in a while. 
And we have Molly Maids come once a week to help with the housework. Also, both mom and dad work from home, and dad has pretty much taken up the role of mom.</p>
<p>I’ll try and remember the name of the guy my mom is seeing and let you know.</p>
<p>My daughter had hand surgery last spring (to remove a benign tumor), and they actually did have to use a general anesthetic for technical reasons. The only real effect from the general is that she felt tired and dragged-out for a couple of days longer than she would have with IV sedation and a local (she has previous experience with procedures done in that way). </p>
<p>Surgery (of many kinds) is usually followed by a relatively short period of considerable discomfort and tremendous inconvenience (your mother may not be able to use her hands AT ALL for a while), followed by the improvement that was the reason for the surgery in the first place.</p>
<p>If your mom can get her surgery done this summer, you might be able to help out a lot during the “tremendous inconvenience” phase, and perhaps that would make you feel better about the whole surgery.</p>
<p>HGFM, do you know if your mom’s hand surgery is for scraping? My daughter (college sophomore) has RA and had joints on her hand scraped shortly after her initial diagnosis. Although she came out of surgery with her hand wrapped so thoroughly that it looked like she had grown a football at the end of her arm, she was down to a band-aid within a few days. She did have several weeks of post-op physical therapy, but overall she would do it again in a heartbeat…actually, she has (surgery done on her knee). Obviously, a younger person is likely to snap back faster than an adult, but if your mom isn’t having joint replacement work done, it’s not quite as scary. Perhaps your mom would let you sit in on her next appointment with the rheumatologist, so that you can hear about the surgery and ask questions?</p>
<p>This is what my mom sent me:</p>
<p>Here’s some online info about my hands. I’m confident that we’ll be able to get this handled. It’s just gonna take some time to get all the x-rays, referrals and all that.<br>
Problem #1 – tenosynovitis in the index finger on the right hand. He injected cortisone into the joint under the index finger on the right hand. It’s pretty swollen tonight but he expected that for a few days. He said I should have some relief by the weekend. He thinks this should handle this one for now.</p>
<p>Problem #2 – Boutonniere Deformity – I have this in the middle and pinkie finger on the left hand.<br>
<a href=“http://www.eatonhand.com/hw/hw100.htm[/url]”>http://www.eatonhand.com/hw/hw100.htm</a> - Click on bent fingers – Boutenniere Deformity. Sounds like I’m a good surgery candidate on this one.</p>
<p>Problem #3 – Swan Neck Deformity – I have this in the index finger of the left hand. It sounds like I’m a good surgery candidate here also because I still have a lot of “bend” left in the finger.
<a href=“http://www.orthogate.org/patient-education/hand/swan-neck-deformity-of-the-finger.html[/url]”>http://www.orthogate.org/patient-education/hand/swan-neck-deformity-of-the-finger.html</a> </p>
<p>I talked to him about the extensive twitching I have in my fingers constantly. He said that’s nerves and/or muscles and is most likely a cause of everything being so out of whack. He was a little intrigued though. He could even see the twitching while I was there.</p>