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Hand Surgery

  • By Connie Rifenburg

    I am contemplating having my left thumb and wrist operated on due to Osteo-arthritis. I also have RA, but the damage to my left hand (in addition to carpal tunnel)is related to Osteo – not RA says my Rheum. dr.

    Here’s my question: has anyone on these forums had hand surgery? If so, did it help or make things worse? My RA dr. tells me that hand/thumb surgery is not very advanced and she has seen more negative issues after surgery, than positive.

    I have had this degenerative thumb joint and deforming wrist for the past 5 yrs – progressing to the point that now I’m losing my grasping capability in my left hand. The thing is; it’s not really painful, just awkward using my thumb and my hand doesn’t open completely anymore.

    All of the first joints in both my hands show serious bending and swollen nodules from the OA, especially my index fingers which point toward my pinky fingers in an almost 45-90 degree angle. I had not been specifically treating the OA at this time since we have concentrated on getting my RA under control since I was first diagnosed.

    For the first time since 2003, my CRP and SED rate are within the normal range. FIRST TIME! Incredible, yet now that the RA is under control, my OA seems to be taking front and center.

    I would like to know if anyone has a similar or the same problem, and what, if anything have you done or plan on doing. I’m told it will continue to get worse, but WHEN do I decide to have surgery?

    Thanks to anyone with information for me. At this point, I’m still more afraid of a bad outcome, than I am of dropping things with my left hand – but what about the near future?

    Thanks,
    Connie

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  • By Kayla Gallo

    Connie-
    I’ve had two hand surgeries:
    The first when I was 17 was a wrist fusion and work on multiple fingers straightening and replacing tendons. The second when I was 18 was a sort of ulnar “tethering” to help with pronation/supination pain.
    In my experience, surgery helped immensely. I was able to use both hands semi-normally for the first time in almost a decade. Though my damage was caused by RA and not OA, I would say that if its impacting your daily life to a point that’s difficult to handle, look into surgery. Make sure and research hand surgeons and find one you trust with a good track record; this is intricate work and you deserve only the best!
    Good luck to you!
    -Kayla

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  • By Connie Rifenburg

    Kayla, thank you so much for your answer. I was hoping to hear from someone like yourself who has actually experienced a surgery. May I ask more specific questions? Would you prefer to answer in email? I will wait to hear your answer. Thanks so much!

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  • By Connie Rifenburg

    Since some of my questions might be more personal, I’ve chosen to write to Kayla in email. If after discussing things, we feel our info would be helpful to others – we’ll post our emails here. I really appreciate this forum and the participants who are so willing to help each other.

    Thanks again, RA.net and Kayla.

    Connie Rifenburg

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  • By Connie Rifenburg

    It has been a while since I first wrote about deciding to have hand surgery. I went ahead to see the surgeon who did my right hand carpal tunnel surgery so well, and he did xrays that showed my left thumb has completely “fallen off” my wrist bones. Even he was surprised when he saw the xrays. .. so was I .. I knew how it felt, and I visually saw the comparison between my hands, but had no idea it had advanced this far – including all the first joint osteo swan fingers I have developed in the last yrs. My left index finger is the worst, but all my first joints show the swan effect to different degrees.

    So, first the dr. wanted to have nerve damage testing since my 3 fingers were numb. After having that done – NOT FUN – it showed (luckily) I have no permanent nerve damage from neck or elbow. BUT, I do have severe carpal tunnel impingement. So the dr. suggested we combine surgeries of the thumb and carpal tunnel and scheduled it for June 24th He said 10 days with pin in my thumb and no use of any pinching motion between fingers and thumb in that hand – thank goodness I’m right handed! Then the pin will be removed and a custom arm/hand support will be put on for the next 6 weeks. But I will have use of fingers from the second joint to tips and limited movement of my thumb.

    I began talking with family about scheduling help and care of my cats, etc. and having all the drs who treat me – heart, RA, sleep apnea, and eye dr., sign off for surgery. After talking with the dr. about my bad apnea under anesthesia, he decided to have the surgery done in hospital not Outpatient.

    ONE WEEK LATER – May 23rd………….

    My RA has been in remission for 5 months. I was able to come off all biologics, Lyrica, Klonapin, and stay at 5mg prednisone since January. This was one reason I chose to think about surgery at this time since I was on the lowest doses of all meds. I also have WMD in my R eye and Glaucoma in both eyes. I had injections in my R eye every month for the past 3 yrs to try to slow down the WMD. My last injection was Nov. 2014. I saw a new eye dr. who said I didn’t need them, my eyes were not “leaking” and he would just take a watch and wait attitude. OK with me. Then came my appointment May 24th.

    I knew something was changing in my eyes recently, and sure enough, testing showed that I had lost 2 lines of sight in the past month. IMMEDIATE NEED of injection for the WMD. but, had to get approval from HMO. One week later, I couldn’t have the injection because I came down with what I thought was a sore throat.

    NOPE.

    Eye dr. wouldn’t give the injection as long as I had a cold. Wanted to wait one more week – In that time, my RA went into a critical flare. YUP! CRITICAL. It wasn’t a sore throat I was feeling, it was inflammation in my glands, throat, then my Rknee swelled two times it’s size. I couldn’t put weight on it and my calf became rigid. RA dr. couldn’t give a shot due to HMO approval!!! No kidding! So she put me on 40mg prednisone for 2 days, and added….. XELJANZ…. another biologic. Then 30mg 2 days, 20 2 days, 10..etc. back down to my 5mg predisone. And said that between my eye inflammation and my body inflammation, she would not approve having the surgery on my hand until both were under control again.

    SO…………. here it is, June 3rd. I had the shot in my eye and it was TERRIBLE. In the delayed week, I lost another line of sight – I went from corrected 20/20 to 20/50+ in just 2 wks. The new dr. used too high concentrate of betadine to clean my face and eye before the shot and the pain was excruciating! The numbing meds and betadine scratched the lense (hopefully not permanently) and I was back in his office the same day getting numbing drops to help and taking add’l oxycodone. Two days later, my eye was still blood red but less painful. My knee – still swollen and I had to go back to 20 mg pred. once I reached 5mg because it swelled back up. I’m still on 10mg as of 6/3/15.

    Needless to say, I have cancelled the hand surgery. Help me pray that this flare will not be another 2 yr event like it was in 2009 when I was forced to go on disability… on which I remain.

    I need the hand surgery – thank goodness there isn’t a great deal of pain other than the pins and needle feeling in my fingers when I over use my left hand – but I can’t take the chance of infection from surgery when my immune system has begun to act up again.

    At least I know what to expect when (or if) I am able to repair my ‘fallen’ thumb. And so I wait again….

    Thanks for letting me get this off my chest. It has been so frustrating these last weeks and I guess I just needed to vent.

    Onward… another day.
    Connie

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  • By Andrew Lumpe, PhD Moderator

    Oh Connie, you’ve been through so much. I’m glad you could vent a little here. I sure hope things settle down enough so you can schedule the hand surgery and regain use of your thumb. Keep us posted.
    Andrew

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  • By Connie Rifenburg

    Thanks Andrew…I so enjoy reading all of your posts – so exact and researched.

    It helps me to read about others who have either similar (like the I’m not a junkie, muscle wasting) or those with the challenges I can not imagine (like daily care of children, or still working fulltime) I know each of us can reach our limits – sometimes, depending on what you are handling daily – something small can be the last straw.

    I’ve been there, and have learned that I only hurt myself if I don’t vent and get the stress out in a productive way. (well, sometimes I hit my pillow too) hahaha… But writing can be cathartic in a way and to just have someone recognize a frustrating yell when they read one! 😉

    Thank you for recognizing that yell…

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  • By Kayla Gallo

    Hi Connie!

    I’m so sorry to hear about your recent health issues and RA flare. It sounds like you’ve been through hell lately, so I just wanted to let you know that you’re in my thoughts & prayers! I’m glad you got in to see your hand surgeon and discuss with him your options, and that you found a hopeful solution for your hand issues. I hope your health starts improving soon so you’re able to go through with the surgery. Again, I’m so sorry to hear about your flare. Please keep us up to date on your situation 🙂 I sincerely hope you start feeling better soon, I’ll be praying for you!

    -Kayla Gallo

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  • By Connie Rifenburg

    Thanks Kayla, the information you sent me was really helpful and your prayers are so appreciated too.
    I know I’m just in that ever-familiar ‘wait and see’ right now and after getting so close to resolving my left hand situation, this was like a ‘wakeup slap’ once again realizing that RA effects every part of our life. Nothing happens independent of the disease.

    The recent article about having a cold and not knowing whether it was a cold, a reaction to new meds, a flare… It’s one of those things where you simply can’t count on how the next expression of your disease will show up. I was reminded tho, after 5 months of coasting – that it WILL show up again. It’s only a matter of WHEN.

    Since I live alone, I have to count on friends or family to plan for a situation like surgery, and since I set it all up with them, the drs, the hosp. etc, they are even MORE confused as to what happened so suddenly than I am. If I’m IN this body and can’t figure out why I feel ok one day (or for months) and suddenly can’t walk, can’t swallow, and then BLAM! a double whammy with my eyes.. I’m not surprised that friends and family are even more confused about what’s going on.

    so… the best thing right now, is settle in for the long haul, try to put on hold what I can, and do a wait and see with the new biologic to see if it will calm down the flare. And ofcourse. Pray.

    Thanks for the support.
    connie

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  • By Mariah Z. Leach Moderator

    Hi Connie~

    You are right – it can be so frustrating when things change or flare and we can’t identify the cause. There are so many moving parts – medications, stress, exercise, diet, emotional status – that it can be hard to know what has changed. But I also agree that the best thing we can do is settle in for the long haul and try to be patient. I am currently waiting on the results of a new biologic as well! I wish you the best!

    ~Mariah~ (Site Moderator)

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  • By Connie Rifenburg

    Well, I just reread my post from 2015 and it has taken me THIS long to get to the point of surgery on my left hand again!! More than a year! Sept 23rd – 1 day away from surgery and it has been a roller coaster ride of health problems.

    To back up a little, I was put on Xeljanz at the time of my last post. It was awful, but I stuck out the side effects for 6 months waiting for them to ease but they never did and I insisted to my Dr that we find another treatment. The side effects were very similar to a high dose of prednisone. Terrible weight gain, depression, anger issues – with limited help with pain.

    Fast forward to Jan 2016 – off all biologics and only on Prednisone 5mg/daily steady, but up and down for flares. My OA continues to get worse and I had xrays of painful knees (both knees have baker’s cysts behind them that enlarge and reduce according to inflammation). My right knee was the worst and had damage to all 3 compartments. Bone on Bone and suggestion of Radiologist to seek surgery. Left knee, not as bad. Only 1 compartment gone. Meanwhile, still trying to find a biologic I can afford and that works.

    April 2016 I turned 65 and went on Medicare+ medigap coverage which FINALLY covers all my costs 100% including the infusion of Orencia monthly (which previously had a $1700/mo copayment) I anxiously started my first infusion in May 2016.

    June, July and taking 10mg/daily prednisone the RA is back under control, but my left hand is so bad now that I have no feeling in the tips of my fingers for hours and hours at a time. So, I went back to the surgery dr. and scheduled the long awaited surgery for Aug 3, 2016.

    OF COURSE, that didn’t happen. July 28, I came down with pneumonia. Hospitalized and had to cancel surgery, stop Orencia, and deal with complications of the pneumonia. Finally got through the pneumonia by the end of August, started a 5-week injection into my right knee of a med to hopefully stave off surgery on that knee for a while. Once a week injection for 5 wks (just had #2).

    AND HERE I AM…Sept 22nd, awaiting the hand surgery I wanted over a yr ago! All is in place I hope for the next 6-8 wks of using just my right hand since I live alone and will need assistance. I will go back to receiving my infusion of Orenscia in Oct 2016 and hopefully that will help w/the RA issues and I can back off the prednisone again. With the 5 injections in my knee, I’m hoping for relief of the worst of the bone on bone rubbing. And most of all, I have high expectations of the carpal tunnel and thumb repair to my left hand beginning tomorrow.

    It has certainly been a journey for the past year and I ask for prayers once again for good results and future improvements from the surgery and other treatments.

    I am grateful to have this place to read other’s stories and voice my own. Thanks.
    Sincerely,
    Connie Rifenburg

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  • By Erin Rush Moderator

    Thanks for the update, Connie! It sounds like you have had one heck of a year! I hope your surgery goes well and that your recovery is smooth and as easy as possible. I also hope you have some outside help to be there for you during your recovery time. Thank you again for the update and we at RheumatoidArthritis.net will be thinking of you! Best, Erin, RheumatoidArthritis.net Team Member.

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  • By Connie Rifenburg

    hi erin,

    Please forgive all lower case since i’m typing with one hand and just 6 days post op.

    my first comment is – – IT IS PAINFUL!

    apparently there was more osteo damage to my hand than expected, so the dr had to do a lot more ‘shaving’ of the bone from the base of my thumb to my wrist to realign my thumb. they planned on one pin at the base of my thumb with attached tendons taken from my arm to “open up” my hand and reset my thumb after cleaning off the osteo. in addition to the thumb surgery, they also did a ‘regular’ carpal tunnel release and then had to add two pins to my thumb to get it to bend correctly. (hoping that works!)

    the surgery was expected to take one hr – but ended up taking 3.5 hrs and due to apnea problems I have, they decided to give me a block from my clavicle down my whole arm, but left me awake the whole 3 hrs! I couldn’t feel anything, but the beeping and bright lights and noise were so irritating – i’ve never experienced being awake during surgery and i hope never to again!

    i found out that medicare doesn’t cover home health care if you use a day surgery – not a hospital so i’m trying to deal with caring for myself with a little help from family. 6-8 wks recovery i’m told so it will be challenging. any helpful tips from single people in self care tricks would be appreciated. i am right handed and surgery was on my left hand so that helps a little. stitches out and custom splint on 10/4/16, so movement will be less restrictive than right now.

    ok… back to bed for a while. doing ok dealing with pain.

    ONWARD!!! 🙂

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  • By Erin Rush Moderator

    HI Connie! While I am glad your surgery was successful, I am sorry it was such an ordeal! My goodness. I am sorry about the issue with Medicare and home health care. You may be able to challenge that, but I realize it may be something you may not want to pursue while you are recovering from surgery. I do hope you have some help that can come in and check on you and maybe help you with chores and such. Even if someone comes once a week to check in, that could be a huge help for you. Since you are a member of this community, you have probably read some of our articles with community tips already. Did you see this recent video post from one of our contributors?

    Also, here are some tips from arthritis.org — http://www.arthritis.org/living-with-arthritis/treatments/joint-surgery/preparing/post-surgery-recovery.php.

    We here at RheumatoidArthritis.net wish you a smooth recovery! Take care of yourself and best of luck!

    Best, Erin, RheumatoidArthritis.net Team Member.

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  • By Connie Rifenburg

    well, here i am once again – oct 23 was 1 month after surgery on my left hand. it has been a real challenge, and mostly because RA raised its ugly head to make a fairly common surgery into a real saga!!

    on oct 15 it seems my body chose to revolt and i awoke with a rising fever at midnight. headache and 101.3 fever as well as pain pain pain had me calling the ambulance and a stay in the ER until 4am. I wonder if anyone here with a chronic disease has had a problem when going into the ER, that their RA and other treatments are not taken into consideration when being treated. – only what you are ‘presenting’with (in my casse, a fever)? Altho they did chest xrays due to my Aug pneumonia, and urine/blood samples, nothing showed up and so they sent me home and said if it goes up to 101 again come back. They didn’t look further than to bring a “slightly elevated” fever down.

    well, ofcourse it did go up again. Only i was alone and couldn’t get out of bed to even take a tylonol. i awoke at 6am in a bed soaked with sweat and a head pounding so bad i could hardly think. I felt my way to the bathroom and thermometer and my temp was 102.7… and that was obviously AFTER it broke assuming my sweat in my bed was due to that. I called the ambulance once again and went back to the hosp. This time my head was pounding my neck had gone into a muscle spasm along with terrible joint pain which had me in dry heaves and almost unable to respond to commands.

    I live in an independent living apt. and they called my sister to meet me at the hosp when the amublance took me out. This time I hadn’t been able to hold down any of my regular morning medicines so I entered the ER without ANY “normal” meds, prozac, protonics, 30mg of prednisone and an oxycodone- much less the meds I take during the rest of the day.

    The ER gave me anti-nausea meds but wouldn’t allow me to take any of my “other” meds while I laid in the ER for 10 hrs. I began withdrawal from the prednisone, and the oxycodone, not to mention I still had a surgery pin sticking out of my thumb in a cast which I felt might be a cause for the infection.

    Any of you who have had to reduce your prednisone know that it is not an easy process even when you’re doing it right, but in my case, all my normal meds were removed immediately and nothing was given except the anti-nausea for 10 hrs while they did brain scans, xrays, blood, urine, gallbladder scans, and i became a raving maniac.

    They gave me meds to calm me down, but not the meds I needed, admitted me to the hosp. and put me in a ‘holding room’ – no food, no water, no IV, nothing while they waited for test results. Finally in the early hours of the next day they found a bed for me and placed me in a room with an IV and a bed alarm so I couldn’t get up and fall. But I also couldn’t get up to go to the bathroom and no one even came to check on me.

    Meanwhile, I’m running a 102 temp, no antibiotics yet and my head feeling like someone kicked me in the temple. Terrible nursing care if you hadn’t sensed that yet. I continued with dry heaves for another 12 hrs while they decided what to do. I lost 11 lbs in 4 days. Finally, on the 3rd day in the Hosp. they began giving me 100 mg prednisone IV and some really heavy antibiotics and that night I got chills at 3am with only one nurse on the floor who tried to pack me in ice and cooling blankets to bring down my fever from 104 for 4 hr. she gave me tylonol and it didn’t budge finally she called for a sepsis team to get an infectious disease dr. and consult in. They did a spinal tap meanwhile my neck was still being pulled back by tendons reacting to all the pain I had. Plus they gave me blood thinner shots in my stomach while still holding back my regular meds!!

    I have wet macular degeneration and glaucoma… as well as RA and osteo and yet they refused to acknowledge my need for the meds for these diseases. I went 2 days without the drops for my glaucoma and my pressure went from 14 to 28, now I have to have laser surgery for it as well as my BP went up too high also. On the 4th day, they brought in an RA dr. who angrily told them they shouldn’t have stopped my steroid for 2.5 days and my oxycodone and she called an orthopedic surgeon she knew to come and look at the site on my thumb with the pin still sticking out of it.

    On the 5th day, my fever came down to 100, the ortho. came in and pulled the pin out of my thumb and cleaned the wound, and since they couldn’t find a reason in all the tests why my fever happened they just called it a fever of unknown origin. Since I had been in the hosp. for 6 days they readied me to go home. Yup. Sent me home the next morning. unhooked the IV antibiotics and suddenly brought my steroid to 50mg IV and sent me home with a muscle relaxer for my neck.

    I insisted that they send orders for a nurse to check on me since I live alone and I was so weak and confused by what had happened. I came home and a nurse came on Sunday to take my vitals. My BP was so high she called my primary dr. and he said to send me via ambulance to the ER.

    This time I chose a different hospital -further away but one closer to my primary dr. My sister followed the ambulance and was my spokesman to the ER as to what had been going on. I was so dehydrated I took two sacks of fluid, and still had such a headache that I couldn’t stand light or sound. I had more xrays taken, more blood and urine taken and was given a pill to quickly lower my BP.

    Nothing showed up in these tests either and I was sent home with a prescription for Clonodine to take if my BP suddenly spiked again.

    The next day I had an appt with the surgeon who did my hand, he said it looked good, gave me a new splint for another 2 weeks to keep my thumb immobile and return for final ok to start occupational therapy. I went the next day to my primary for follow up from the hosp. That is when I learned that many many dr. are no longer doing hospital rounds in ANY hospital. This is one reason why it took so long for anyone to recognize that I had chronic diseases that needed to be treated no matter what. This is what is happening to hospitals. A few ‘general’ drs take care of anyone admitted and only the RA dr. on the 4th day, FINALLY called my surgeon and primary dr. to get instructions to care for the “whole person”.

    I am now down to 15mg prednisone daily, I have daily nurses coming by to do those things I needed a month ago – no shower for a month, no assistance, nothing! Until my family united to get these things done. And now, when I am 80% better I get a lot of help – just too late.

    But I have learned many things about being single and sick. You MUST have an advocate. Hospitals are understaffed by nurses as well as aides. I went over 24 hrs without water to drink since no one was there to refill my pitcher. I laid in dirty and wet gowns in wet sheets due to the ice packs leaking and no one checking on them for a whole day. Finally a priest who came in the room got some things done, yet my medicines were always late, my call bells weren’t answered, and when I did complain, I was told that there were other emergencies that were more critical than me and to just be patient.

    The surgery on my hand – yah, it’s getting better. Still numb and it will take time to get back the use of it fully, but had I known what I do now, I wonder if I would have had the surgery done in the first place.

    My goal now is to continue to decrease the prednisone, to get back on the Orenscia for my RA and to begin therapy for better use of my left hand/thumb at the end of this week.

    This is long story I know, but it is also a warning to those who might find themselves in a position of trying to handle their chronic disease by themselves. The medical field in America is at an all time low standard of care, and between insurances refusing payments and drs refusing to come into a hospital and not enough nurses to do the most minimal nursing – much less critical nursing, America needs to rise up and force our gov’t to look at where we stand with the care of individuals who are caught in this demise of basic human medical care.

    If you’ve reached the end of this, I promise to come back and post better news in the future but for now, I still need to rest.

    Thanks for listening.
    Connie

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  • By Erin Rush Moderator

    Thanks so much for updating the community, Connie! It sounds like you have had an eventful time of it, to put it mildly. I am so glad you are on the mend now and have a nurse coming in to help you as you recover. I am so sorry you had such a tough experience and you bring up many good points about healthcare in America and also, being a single person with a chronic condition. I truly hope you continue to heal and don’t require a hospital visit any time in the near future! Perhaps you might consider writing an letter or email to the hospital administrator about your experience. It may help and even if it doesn’t it may be therapeutic for you to let them know how poorly you were treated. Again, thank you for the update and may this be the start of a healthy season for you! Thank you for taking the time to share with us. We’ll keep you in our thoughts! Best, Erin, RheumatoidArthritis.net Team Member.

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  • By Connie Rifenburg

    thank you erin for the kind words. I continue to improve, tho slowly. I tried to come down to 14mg pred after 3 days, but I got major pain/muscle aches in my left groin and left ankle. How strange is that??? Of all places, but it was debilitating due to being unable to get up out of bed/chair and walk to the bathroom. I went back up to 15mg (who would think 1 mg would make such a difference?) and today, the pain is slightly better. I also took a muscle relaxer and I’m not sure which is relieving the pain.

    The nurses that were coming in to my home have all stopped. (nurse, OT, PT, Social worker) until my surgeon writes a prescription for the hand OT in another week when the last brace comes off. I cannot stress enough how much a single person needs to have a health surrogate or family member to continue followup on any discharge instructions from the hospital. I’ve never felt more strongly than I do now, about the fact that we must treat the patient as a whole at all times. We have become a nation of specialists who focus only on their particular specialty and require the patient to contact all other doctors regarding the other needs of a person with multiple chronic diseases.

    Each disease interacts with the other diseases and to expect the patient, who is dealing with pain, confusion from medications, and the stress of hospitalization, to be able to coordinate all the things needed – groceries, paying bills, daily living needs, fixing meals, doing laundry, etc. without someone to help is ludicrous. Our hospitals need to have someone speak to discharged patients BEFORE they go home, to make sure they have people or organizations in place, to continue a certain level of care.

    Once again, I go back to the fact that the hospitals in America are under staffed yet continue to bill as if the patient was staying in a 5-star hotel!! Erin, I am following up with a letter to the admin of the hospital I was at for 6 days. What will come of it, I can’t imagine, but you’re right that it does help to ‘vent’ about how I felt at being treated with little or no compassion for the ‘person’ despite all the tests that were done to discover the disease.

    I hope that my experience will help others to try to prepare for ‘the worst case’ scenario ahead of any scheduled hospital stay as well as afterward when they return home. I was not aware of who to contact (which the social worker gave me phone numbers and contacts)or other options available to assist someone living alone before I went in for surgery. For me, having someone to do those tasks that seem simple, but can be frustrating, would have made all the difference between a smooth recovery and one that I look back on as nightmarish!!

    Thank you, and I continue to improve with baby steps. I hope to get through the holidays with a positive attitude and begin the new year with improved health. I begin Orencia infusions on Nov 30th, and here’s hoping I can get the same relief from RA as I got before! With a biologic, I should be able to reduce the amount of steroids when combined w/Orencia, and for that I am mighty grateful.

    Happy holiday soon to all and may 2018 be a blessing
    connie

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  • By Mariah Z. Leach Moderator

    Hello Connie ~

    Thanks for sharing your story – I agree whole-heartedly about the importance of treating the patient as a whole! I also think it is great that you are providing feedback to the hospital. You are right that nothing may come of it, but it’s certain nothing will if we don’t speak up. I hope that things continue to improve for you and that the Orencia infusion is beneficial. Hang in there and please remember that we are here to support you!

    ~Mariah~ (Site Moderator)

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  • By Connie Rifenburg

    Checking in again with you and still slowly improving. Patience is the keyword of this whole ordeal.

    It’s now Nov 16th and my hand surgery issue is improving, yet slower than I’d like. I have a very weak thumb that simply doesn’t want to act like a thumb. It just ‘shakes’and wobbles when not supported with a brace. I guess that’s why I need OT to begin strengthening the wrist and the area of the thumb that has anchors and tendons binding it together. I should start OT after Thanksgiving since I’m beginning to get into the holidays.

    The high doses of steroids and my BP not being under control caused my glaucoma to get quite bad. Since my hospital stay, I have had laser surgery on both my eyes to try to open up and drain the fluid causing the pressure. Because I’m only down to 12mg of prednisone daily, the pressure in my eyes once reduced to 14 has risen to 19 in one eye and 20 in the other. That’s better than 28 and 23, but still too high and if it doesn’t reduce further and stay down, I will have to add more drops which can get expensive. When I had my regular injection in my right eye for the Wet Macular, after my hosp. stay where blood thinner was given to me during that time, my eye bled after the needle entered and my whole right eye was not white but blood red and everything looked pink for the next 2 wks. It has calmed down now and next week I have my next injection into the R eye after having the laser this past week. Hoping that the new BP med (3rd try is a charm?) will lower also and no more spurting blood from my eye! yuck!

    I am still scheduled to start Orencia on Nov 30th and I pray things will continue to improve after a few injections again. I finished the 5 shots in my right knee and actually had a lot of pain relief for several weeks. But unfortunately,it is already beginning to wear off. At this time, I can’t even THINK about having the R knee replaced. I need more time to recoup. so I am not doing much moving around without my walker or cane again.

    I got a response from the hospital in the form of a ‘complaint’ form to fill out and send back and they will review it. I didn’t really expect more than that I guess. With the holidays coming up, I am doing all my shopping online and glad for that! No fighting crowds and germs this season.

    Wishing everyone a healthy and happy thanksgiving and best wishes for a continued holiday season. I noticed I skipped 2017 in my last post and jumped to 2018 – maybe I knew something… eh?

    Best to all,
    Connie

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  • By Mariah Z. Leach Moderator

    Hi Connie ~

    I hope that you are able to start OT soon, as it sounds like that would be useful for the specific thumb issues that you are experiencing. I hope that your eyes are doing better now as well. It can be so frustrating when conditions and treatments overlap, making it an even more difficult balancing act to find the right thing to do! Please let us know how the Orencia goes. Most patients who are able to find a biologic that works for them have a huge increase in their quality of life, and I truly hope this will be the case for you!

    Hope you have a happy and restful holiday season!

    ~Mariah~ (Site Moderator)

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  • By Connie Rifenburg

    Well, here I am a few months out from surgery! Feeling better. Started OT @ the end of 2016 and am still attending twice weekly and improving. My first day with OT I was skeptical as to what they could do to help me use my hand and get the strength back to grasp things instead of dropping them. But I had a specialist who only works on hands and she knows hands back and forth and got me started with exercises, heat treatments, splints and I told her on my first visit… “my goal is to crochet again. That’s my goal and I want to work toward that.” She told me today, that I came in with a goal in mind and the attitude that I was willing to do what it takes to crochet again. So she knew that I was determined to improve and that made her determined to find a way – even if it wasn’t my old way – to crochet again.

    I went for my last appt. with the surgeon yesterday and he released me from care saying that the two things that take the longest to get back are the grasp and pinching motion and I could expect at least 6 months. But all has healed well, and
    working on some strengthening exercises and learning some new ways to use my hands so that I’m not straining the anchors and tendons they used to fix my thumb.

    Am I happy I did it? Well, I will give the same advice as my RA dr. gave me. She said that hand operations are not very sophisticated and don’t always have good results… so before you choose to have surgery on repairing your thumb, make sure that it is too painful to continue as it is before you make the decision. I did that. I waited 4-5 yrs after having my right hand done, to have my left carpal tunnel and thumb repair done. I can honestly say that the numbness and pins/needles I felt in all my fingers and the wrist is improved. Not completely gone, but better.

    But it was a very challenging surgery to undergo living alone. If I had chosen surgery 5 yrs ago when I first began having pain, I would have been angry with the results after surgery. My expectations were to have my left hand back to normal. It isn’t. It won’t every be normal again. But because I waited, I can say that it is better than it was.

    So, it’s been a long road, I keep hoping that each week I improve, and my goal of crocheting again? I started doing some just last week. The repair of my thumb was hindered by my RA and other chronic disease I have, so it doesn’t mean that everyone will have as prolonged an issue as I did. But healing is slowed when you have RA and other complications can interfere with a clean healing, so be ready and expect a longer healing time.

    I started Orencia and have had two consecutive infusions, so I’m placing my hope that the Biologic will work toward
    giving me another option besides Prednisone. These steroids are so hard on your body (not that a biologic is easy) but I had good results several yrs ago on Orencia and actually went into remission… so I’m keeping my fingers crossed for a positive ending to this saga.

    As far as my eyes, well the news is not as positive. The Glaucoma has raised its ugly head and the pressure in my eyes continue to rise despite laser treatment last month. There is also some scar tissue growing around the cataract implants that is also keeping me from seeing very well. Dr. ordered a second eye drop to add to the first one, and I will be using it twice a day and the first eye drop, just once a day. I know that the doctor is doing what he can with my Macular Degeneration and the Glaucoma, but until a cure is found, blindness is the result of both these diseases, so I try to prepare to handle that in the near future. Wet Mac takes your central vision and Glaucoma takes your peripheral vision. Having both will contribute to full blindness in time. I continue to get the monthly shot in my eye for the Wet Mac for the past 5 years and I use the drops religiously daily to try to bring down the pressure. Those things I can do, the rest is up to God.

    Thanks for letting me share this with you.
    Sincerely,
    Connie

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  • By Erin Rush Moderator

    Thanks so much for the update, Connie! I am glad your hand is doing well. And thank you for your honest input on the whole surgery route! That’s some great insight from someone who has been there and it could really benefit our members considering hand surgery in their future.

    I am sorry your glaucoma is worsening and causing issues. I think you are very wise to be as proactive as you can about protecting the sight you have left. I do hope you can beat the prognosis and keep your vision for longer than has been suggested!

    Thanks again for taking the time to update us! Your detailed, pragmatic posts truly can benefit our members and educate us all about some of the ins-and-outs of life with RA!

    Take it easy and keep up the great recovery!

    Best, Erin, RheumatoidArthritis.net Team Member.

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  • By Connie Rifenburg

    Hi LisaInMinnesota,

    Wow, 8 fingers and carpal tunnel too! What a lot of surgeries! It’s so strange that you “appeared” today because even though I thought I had healed and had even started to crochet a little once again, I had a set-back!

    About 6 wks ago I suddenly had a ‘flare’ of my RA. I had pain in all my big joints in one day – my knees, ankles, shoulders, but it terribly affected my hand from the surgery. For a week I tried all the tricks of dealing with inflammation such as ice, heat, soaks, muscle relaxers, and upped my steroid from 5mg to 10mg daily.

    As the prednisone started working, the pain began to fade and I started to come back down off the prednisone. BUT, once the pain was gone, I noticed that my pinkie and ring finger on my surgery hand were now almost “paralyzed”. They would not move – yet I had no continuing pain after that first week. It almost felt as though I had had a stroke in my hand. It would not do what I wanted. I couldn’t close it or pick things up. And more importantly to me, I couldn’t crochet again! I couldn’t hold the yarn in my left hand because those fingers were spastic.

    It took me 5 weeks to get in to see the surgeon, due to his busy schedule (I wasn’t very happy since it had only been 6 months since my surgery) but I finally saw the PA last week and after “barely” listening to me, he suggested that I tape my fingers together because it appeared as tho my ulnar nerve was affected and that was quite a significant surgery to repair. I said that wasn’t an option to tape my fingers together. (can you believe that?) So he said I would have to have a nerve conduction study done again since my study in 2015 didn’t show any problem with my ulnar nerve. That is a very painful test if anyone has had it, you know what I mean. But I scheduled it and had it done yesterday.

    The results were not good. I have ulnar nerve pinching at my elbow as well as my hand at the wrist point opposite where they did the surgery. Plus the Dr. found that the Carpal Tunnel had not given complete release either. This dr (who specializes in doing those tests) said it was really unusual to have compression of the nerve at both places but to have the worst compression in my hand and not the elbow. That spot being the least likely of all areas. But that it was significant and not only was it pinching the ulnar nerve, but had stopped the blood flow to the muscle and it was weakening my whole hand.

    I will speak with the Surgeon to review these tests on Mar 23rd and I’m afraid I will have to go back into surgery to repair this situation or my hand will continue to get weaker as the muscles die. I think I’m explaining it correctly. I can’t imagine going back into surgery again after only 6 months and this time have my whole arm in a cast from the elbow down to my hand.

    Lisa, can you tell me how you dealt with so many surgeries on your hands and were they worth the pain involved for the results you got afterward? After my horrible experience with my hand surgery and the additional problems that came with the surgery and infections, I’m truly gun shy about doing it again.

    Could you tell me about your surgeries and recovery and results? Are you a single person or do you have someone that lives with you to help after surgery? I will have to stop Orencia again for a month before and after and it is just beginning to affect the RA after regular treatments.

    In addition to this new hand issue, my glaucoma has continued to worsen and they have added another eye drop 3 times a day now. But I am losing sight directly below me as I walk – my poor cat is getting the brunt of it by me stepping on his poor tail. I don’t see him until I step on his poor little tail. The Wet Macular is also progressing, which I sort of knew would happen too. I’ve had a solid 5 1/2 yrs of sight beyond what was expected. But I am finally seeing the signal of the imminent loss of my central vision with the center circle in my vision looks as if I’m looking through a screen door. I can still see through it now, but it’s not clear. I know the end result will be a darkening of that circle until it’s opaque. Then I have to rely on my peripheral vision, which Glaucoma attacks unless we can get it under control.

    One never knows the path that they will follow until the very day they wake up and walk it, but knowing I have this to face is a heavy burden these days. I’ll know more on the 23rd from the surgeon, and this time, I will make certain I have help when I return from the surgery so I don’t have that added stress in the first few weeks.

    Lisa, one more comment here on a positive note… it was a pleasant surprise to read that you are from MN. I lived there for 10 yrs in the 70s and worked as cameraman for WCCO TV and FM for a while. Also Control Data. My family is all here in Florida, so when I came back in the late 80s to help with my father’s health, I ended up staying because my son loved it here…but I will always feel like MN is my true home. I fell in love with it during my first fall season around Lake of the Isles. So you were my “sign” to try and ‘buck up” until I know more things for sure next week. I’ll watch for your story as I’d like to hear how you handled so much surgery.

    Thanks,
    Connie

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  • By LisaInMinnesota

    I had all but the pinky fingers worked on for trigger release. I have had my fingers freeze from RA before. My middle finger on one had froze closed and the other middle finger on the other hand froze strait. Didn’t hurt – just got stuck. I think it lasted if I remember right a week or more. Then they went back to normal as quickly as it happened.

    With trigger finger, I would go to use the fingers and it would lock with extreme pain. Like it would make me scream type of pain. I was awake for both hands. The surgery was fine, didn’t freak me out. They covered my face with a tarp with the open end facing a nurse who sat and talk to me the whole time. Afterwards, I could use my fingers and what not. Just had to be careful. I wrapped my hand up in saran wrap until the wrap could come off. Then used someone else’s posting suggestion to use rubber gloves I bought at walmart over my hand to cover the stitches in the shower. I used tape to tape the end around my wrist. Worked like a charm. I soaped up the stitches to keep them clean once a day. No biggie. Now, months later, I am able to use all fingers. The carpal bones get a bit sore on both hands but that will go away I am told. Three still freeze from time to time but with less pain. One of the fingers doesn’t want to always open or straiten. Causes pain and stiffness. She said that it is still healing and it should go away. To use the heating pad at night and massage the scar tissue. I think I might have to have that finger redone.

    The carpal tunnel surgeries was okay. My daughter was a newborn at the time and the pain was so bad and hands so extreme.

    I should note that after my daughter was born my husband died, so I am a widow, single mother of one daughter.

    Anyways… After the surgery , I still had issues with both of them, but the extreme nerve pain was a lot less, much easier to deal with so I thought of it as a success. I mean before I couldn’t even pick up milk without crying. I’m not sure how to describe what it was like after though. If you can pick up milk without crying I guess anyone would call that a good thing. That was something like 8 years ago…

    I now have bone on bone in my ankle, knee, hip, and wrist… I am sero negative rheumatoid arthritis and osteoarthritis. If I understand what I google, RA is a degenerative arthritis that leads into OA. OA is the damage from RA if that makes sense. So I guess I knew this was coming. Not really looking forward to the next few years as this progresses…

    I would recommend both procedures. Nothing will take this away, but it does help us function to some degree less painfully until the next phase of the disease…

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  • By Connie Rifenburg

    I’m just getting back on here and thanks for your response to my questions. I’m so sorry to hear of your husband’s death and so soon after having your child must have been so stressful for you. 8 yrs seems like a long time, but it isn’t when you think of all you’ve been through and how far you’ve had to come, just to keep on truckin’. I admire you for all you’ve been able to accomplish with the RA and OA attacking right and left and caring for yourself and your daughter alone.

    Actually, the RA is totally different than the OA in the way it affects our bodies. Both have the name arthritis attached to them, but I can tell you that the last two years, my OA has superseded my RA in leaps and bounds. My RA is somewhat controlled by the meds I’m taking now. But the OA is affecting the smaller joints in my fingers and it is what made the first surgery I needed to repair my thumb and remove the bone. OA is the arthritis that I feel the changes in weather (or some people refer to it as a change in the barometer). I used to wonder why others complained about how their bones ached when some change would happen, and I didn’t feel a thing. Well, NOW I know what they meant and I also have bone on bone in my knees – right worse than left, but for now, I’m “living with it”.

    It was helpful to hear what you did to cover the stitches so you could shower etc. I also have no dishwasher in my apt so I have to hand wash all my dishes. I use paper plates for a lot of things, but I don’t like them for hot meals so I always have dishes. That was a dilemma after my first hand surgery.

    Speaking of which. I had my followup visit with the surgeon today after having the nerve conduction study done and it was basically just what the Dr. Tech told me during the testing. I definitely have compression of the ulnar nerve just below the elbow and on the pinky side of the hand I just had surgery on. <sigh>

    Meanwhile, I went to see my chiropractor and talked with him about the study results and he has worked twice on my arm and hand trying to release that nerve. It has helped and he thinks with 6 or so treatments over 3 wks, he might be able to manipulate the muscles to hold the nerve back in place. No promises, but it did feel better after some painful work on it last week and today.

    I spoke with the surgeon about this option vs surgery. He wasn’t against it, he simply thought it was not going to release the nerve. He said if it were muscles that were compressing the nerve, manipulation would help, but in my case, it’s the cubital tunnel pressing on the ulnar nerve which must be released just like the carpal tunnel bone and that the longer I wait, the more the muscles are not receiving the electrical stimulus they need to be able to use my fingers. He explained a lot to me about what the ulnar nerve does and how it controls the motor movements in the hand. It made sense, and he felt it was most likely caused by the RA flare I had last month when I had so much pain in my big joints and particularly in that left hand that I finally raised my prednisone from 5mg to 10mg and then slowly came back down. Now I no longer have the pain, but I have the paralyzed fingers.

    So, the story moves along. I have to see for myself that the Chiropractor can’t help before I go through another surgery on that hand and since I have to be off the Orencia for a month before surgery, we scheduled the surgery for June 28, 2017 and in the meantime I will go see the Chiropractor for the next 3 weeks hoping against hope that it might work.

    That’s the plan, and I did talk with the dr. about home health care immediately after the surgery since I live alone and the last surgery was a disaster in my care afterward. So the Dr. office will set up a visiting nurse to see me for the week or so right after surgery, thank goodness. I asked if I could stay overnight in the hospital where I’m having it done for that first night as the block wears off and the pain kicks in. He said he was sorry, but the Insurance companies have said that it’s not a big enough surgery to keep me overnight. (Sad state of affairs of our health system in America).

    I’ll be checking back to see if anyone has more hints for recouping from the Ulnar nerve surgery. The Dr. tells me the bandages will look a lot worse than the surgery at first, but that it should be an easier recovery than the thumb repair and no splints and stitches like that surgery. Let’s hope he’s right!

    Thanks for listening, and it may sound crass, but I actually feel better knowing that many of you have had repeated surgeries on different joints over time since my hand was my first major repair job caused by the OA/RA… and the ulnar will be my second. All within one yr.

    Bless you for being here and giving me a place to vent.
    Sincerely,
    Connie

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