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new diagnosis from surgeon!

leocat46lleocat46 Posts: 125
edited 06/11/2012 - 8:26 AM in Neck Pain: Cervical
hello everyone
i just wanted to let you know i finally went back to surgeon who did my rotary cuff surgery back in aug. 21st. pain has worsened , more than when i first had surgery, i went my p.c. to get some answers , and he called my o.s. to tell him, and i was told to stop all p.t. , and he would see me in 2 wks. yesterday the 19th. i wore short sleeve shirt to appt. , so he could get a good look at it. and he has diagnosed me with RSD. (reflex sympathetic dystrophy). my shoulder stays swollen, red, and BURNS with pain. it is effecting my neck issues big time. my upper back burns also, with neck due to my herniated disc c5/c6. and ddd, spondylosis, bone spurs, etc. i cannot get a break. i know so many of us suffer on here, but i was not prepared for this. the thing of it is that since i have know been diagnosed with this, i cannot go back to N.S. for my cervical issues. he said performing surgery now would possibly worsen. i do not know if anyone out there is familiar with this. but it is a very painful chronic neurological nerve disease, that is progressive to other parts of the body , if not dealt with. so here is the dilema, if anyone wants to comment. He ordered me back into 2 more months of p.t. he said point blank , if not better, he will be putting me to sleep, and making it move. from what i have learned from alot of research , maybe he should have given me some shot, or something for inflammation. with this disease that it is, it constricts the blood flow in that area, which causes progresses to other areas. i ask for something else than darvocets, and he said that he did not want me to get addicted. so he sent me on my way with pain relievers, and p.t. to start , seeing the holidays, i can only get in 1 day next wk. there is no cure for this, from what i have read, and sometimes it can go in remission. it can even jump to other shoulder. i am not sure if my o.s. is making some good decisions. me and my husband think maybe i should be getting into other drs. my neck pain , and problems are so hard to deal with, trying to cope with this now is making me very emotional, i cry alot more . as i type here at computer , i am in pain. i took darvocet 1 hr. ago, and nothing is helping. i read on a site that do not use cold or hot compresses, because it can make it feel worse, due to nerve endings. that explains when i was in p.t. why i was hurting worse. my o.s said that my nerves are just hopping, in there constantly. but in turn he tells me "you got to get this moving" so i am very hesitant to start p.t. i am sorry this is so long. thanks for listening. hope everyone is finding answers for their pain. always leo 8} :T :''(
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Comments

  • I am so sorry for such a horrible dx. Have any of the doctors prescibed Lyrica or Neurontin? Maybe I am reading the post wrong, are there nerves involved. I think I would be getting another opinion asap. Darvocet is not strong at all, that is what I take and there are some days it does nothing for my pain. I would think the word "addict" would not be an issue here with the amount of pain you are suffering. I do hope things get better and you find better answers.

    Sharon
  • another opinion and go to a neurosurgeon, they know nerves and seem less concerned about making someone in pain an "addict". A person cannot get better if they are in pain. Pain stops us from moving, stops us of from caring, stops us from healing-sounds like an addict to me already so what is worse? You can always get off pain meds, but you can't get off the pain cycle. Find someone would cares about your mind/pain as well as your body/disease.

    Please have hope!

    PS My surgeon just put me on Neurotin, too.
  • I also agree it would be best to get a second opinion. I hope you feel better soon. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I am so sorry to hear of your constant pain and difficult diagnosis. I was looking up your condition and it sounds very painful and troubling. Doctors these days are increasingly concerned about drug addiction because of those who abuse drugs and or the DEA keeping track of what they do. However, pain control is of utmost importance to your entire well being. Continue to advocate for more appropriate and more potent medications for relief as needed. (I used to take Darvocet, but now my pain just laffs at it, and doesn't even touch my pain.) The possibility for addiction is real, however, so never ever take pain meds for anything other than severe pain. If you do this, the possibility of addiction is very small (say the statistics). That being said, continue to push for meds that will help you feel better! Do you have muscle relaxers, NSAIDS, and nerve meds, on board? According to my research, some of these meds can help to alleviate the pain. I went to: neurologychannel.com/rsd. The more we know, the better we can advocate for ourselves. Do you have a counselor/therapist to talk to about your situation? I hope so. I hope your situation improves, leocat, and that you are feeling better soon. I can sympathize with you as I have lots of pain too. Hang in there. My therapy is music, The Bible, Jesus, my supportive church. Do you have a good support system and positive people in your life? That is critical as well and has been great medicine for me. :)))
  • I too am sorry that you are in such pain. I know the pain of burning. I have BRP Brachioradial pruritis which is related to sun exposure and cervical nerve pinches. Neurontin and Lyrica have been used to help treat this..I haven't had to use either because the cervical surgery and my decrease of sun exposure has helped with the burning and itching.
    Please stay hopeful..keep talking..scream and cry as necessary :S
    I don't know anything about why cold would be bad for you..I would wrap myself in ice filled towels and got relief for the nerve pain but I don't know your condition.
  • Leo,

    I sent you a pm regarding this, don't hesitate to contact me, hope it helps.
  • thanks alot for all your concern. i have been in that site neurlogical channel. i am a big advocate for research, thats how i found this site. if we do not find answers with our drs. ,, thank god for the internet, to find things out. i would not know anything about my condition, if i did not research it. i am finding out that is a rare condition, but alot of people are suffering from it, not knowing what it is. i was not expecting this, along with my cervical problems, it really puts this in a talespin. my o.s. said that this is serious if not treated correctly, but all he does is through me back into p.t. i think i should have been given something else also. i am keeping my appt. with my N.S. on the 30th. only it will be for RSD now for second opinion. instead of the cervical issues, (surgery) . but now that is put on hold, until i get this dealt with. all i know is that like all of us on here, it is one more medical problem on top of another. it seems like it never ends. i never would have thought that at age 47, i would be applying for SSD. i have also been researching this also, and since 2003, "RSD" , has been put on the list as medical condition, mainly because of its pain related, functioning, etc. i appreciate all your responses, and hope to learn more, and hear from anyone else with same or know of. thanks again Leo
    :S :(
  • I am so sorry to hear you have RSD, my mom has RSD in her right knee. Her leg turns purple and swells, with burning pains, as you are saying. She is getting along good yet, she found this out about 10-15 years ago. She has fought and never gave up. I believe this is in your blood too :)
    I believe she puts heat on her knee when it gets bad, and it does help.
    I was to go today to the see my OS but canceled my appointment because of a dead in the family over the weekend.
    Let us know what you find out on the 30th
    Justme
  • hello everyone, just thought i would let you all know i had my appt. with my N.S. yesterday. He definately says i have nerve damage in my shoulder. He did not claim to be an expert, but told me that RSD newly known as complex regional syndrome, can be a serious condition. he described it as short circuit board in my body. he said the wrong button was pushed, and my whole body is shorted out, going crazy everywhere, with all kind of problems. I have atrophy so bad everywhere, very fatigued, my hands, and fingers were purple , and shake because of lack of blood flow, the pain is all over. well anyway, he recommended i see a rhumitologist, and another O.S. for more opinion. he was very nice, and was straight forward with me, he said he would be glad to give me referrals if i need it. me and my husband went home , and thought about it, and decided that we wanted drs. not in our area at all. so i made some calls to my insurance, no referrals needed for PPO. we live up by great lakes in northwest ohio, and i looked up website for cleveland clinic, and they do not need referrals to make an appt. if anyone in this area knows the cleveland clinic has experts, and people come from all over . needless to say i have an appt. with them next week Jan. 7th, it is about 90 miles east of us. i have to bring my x-rays, copy of MRI's , surgical report. i have to be there early for x-rays , so they can compare. i thought now we are getting somewhere! they arrange from coming from a distance, to see both drs. on same day. i will be doing everything. i am very pleased with getting in so soon, i thought it would take at least a month or so.
    My N.S. said that we have to take care of this, aand we will put my cervical issues on the back burner for now . i have and appt. with p.t. this morning, i feel like it is useless at this time, but it is important to keep it up he said. well i thought i would update everyone, i wish everyone a happy new year, <:P hoping 2009 will be better for all of us. take care LEO #:S
  • I wanted to wish you the best. You have been through a lot and I hope the trip to the new doctor's brings you some relief and answers.

    Sharonn
  • i have been to the cleveland clinic wed. I seen an orthopedic, but he was not a surgeon. and i seen a rhumitologist, muscularskeletal. he was very nice, he and the other dr. also said i have RSD, he says i probably have frozen shoulder, but has ordered an MRI, to make sure there is not something else going on in there to prevent my arm from going up. its about time i think. finally someone is listening to me. with RSD , any surgeries will make it worse. we have to work on the pain first, then moving the arm . my neck is put on hold for now. we have to address these shoulder issues first. my neck feels like it has a big ring around it sometimes, the shooting pains zap me when i least expect it. ~X( i am very concerned that i may have to live with alot of issues since i have been diagnosed with RSD. i am afraid to have any surgeries now. Dr. did recommend me to a pain mgt. specialist, i will see next tues. , then an MRI scheduled for the afternoon same day. He also gave script for neurotin. i go back to my rhumatologist on the 4th of Feb. as far as my dr. who did my surgery, he wants to put me out an break my shoulder if not better in 2 mths. my dr. says that is not what should be done. you are not going to believe this either. they wanted to see my operative report from my surgery. when the first dr. looked at it, he assumed i had an open 7cm incision. i said no, i had arthroscopic, with 3 tiny incisions. he showed me that this operative report does not describe me at all. so i am not sure what is going on, but i had to take the paper to the drs. office, and they are supposed to be calling me back. all in all i have been very busy lately from hospital, 175 miles round trip, but it is worth it to get some good care. i have got a long road ahead of me, he said RSD is very hard to treat, we will see. if anyone else has this , i would love to hear from you. thanks for listening Leo :SS
  • I'm sorry you have this diagnosis. I read some about it, and I was shocked they would only give you darvocet in fear of you getting addicted. Nonsense! It is highly recommended that you are seen by pain specialist right away for this condition. The pain can get out of control and I also read that CRPS must be treated aggressively. The docs at the Cleveland Clinic are sending you in the right direction. Make sure you keep that appointment with PM. I know they will take good care of you now >:D<
  • thank you meydey for the reassurance. i think i am headed in the right direction also. i had p.t. yesterday. and they used ice and electrodes, and i was in pain from couple hrs. afterwards, and did not let up the whole day and nite. i read the ice is not to be used for rsd, i think they made a mistake. should p.t. people not know this? :? i agree my O.S. did not give me correct meds, and is not sure how to treat me. the swelling in my arm is driving me crazy. stay well everyone LEO
  • I don't know if this has been brought up or not. A few months ago my shoulder was giving me horrible pain. Doctors were confused to what was causing it, either my neck or an actual shoulder problem. I had 5 trigger point injections in that shoulder and it finally settled down. I found that my tens unit was the best thing ever during that time....it does not work for everyone but it is worth a try. Has any of the doctors mentioned this to you?

    Sharon
  • Boy do I understand your pain! I've had this condition for 1 1/2 years now and the stinging and burning drive me nuts. I take Lyrica, Percocet, Baclofen and am just now in the process of having a surgical devise inserted to combat this problem. I used TENS for months and the help was minimal. I start the trial for the new procedure in 4 weeks. It's a 7 day trial to make sure it takes at least 50% of the pain away or they will not do it on a permanent basis. The pain, numbness, swelling, temperature changes of the affected area, and purple/blue skin tone makes this really tough to deal with. Darvocet? Are you kidding me? My Dr. was ready to put me on the Fentanyl Patch! (Until I refused it) You really need a good pain manger to get through this disease, trust me! It normally gets worse before it gets better. PT aggravates it but is a must so you can keep the muscles and joints working.

    Good luck and make sure to stay on top of this!
  • I don't know about RSD, but I do know about frozen shoulder. I had a right shoulder acromioplasty, and 6 weeks later had to be anthetised (sp) and my shoulder jerked upward to break loose the adhesions. Not fun at all :D That was in 1991. My shoulder has never been right since. It still gets red and hot, and just light pressure on scar causes a lot of pain. I think I would use a genteler approach if at all possible. Good luck. Pain sucks :''(

    Maggie
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