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    Old 12-28-2014, 12:49 PM   #1
    123rsdsufferer
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    Chronic Pain Patient to the ER

    On Christmas Day, I began feeling rough and by bedtime, I was crying from a shooting pain thru the buttocks into my abdomen. After trying everything I could think of and knowing my dr was out of the country, I told hubby I had to go to the ER. He looked at me shocked as I never go to the ER. When I tried in the past years ago, I was looked at like I was crazy and a drug seeker as I was already on pain meds.

    The drive to the hospital was unbearable. Every bump sent my back into further spasm and felt like someone was using a razor blade cutting my backside out. My husband later told me every other word was a cuss word and I am not one to cuss.

    As a chronic pain patient, I do understand how ER drs might think you are seeking drugs but thank you Jesus that the two drs who saw me over two different visits in the same day took pity and compassion over me and gave me intravenous dillaudid.

    The one dr set me up with an appointment to see my pain specialist partner Monday morning at 8 am as he feels I may be developing shingles or there is a problem with L2. The second dr agrees with L2 problem and does not want to order any MRI's as my specialist is known for wanting to be present during the mri. The second dr started me on steroids and flexiril. Thankfully that appears to be helping but I am very medicated at the moment and I hate the feeling but if I let the med wear off the pain is out of control. I am literally couch bound only getting up to use the ladies room. Each step brings more pain.

    Thanks for listening....I just wanted to share their are compassionate drs out there still I have never been so thankful to find them this weekend.

     
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    Old 12-28-2014, 06:18 PM   #2
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    Re: Chronic Pain Patient to the ER

    That is something to be thankful for. I hope you are able to recover quickly! As is having a pain contract which allows you to receive pain meds from another doctor for a short term emergency. I have this, and although I haven't ever used that provision (except for a planned dental procedure), I'm glad its there. Best wishes.
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    Old 12-28-2014, 08:33 PM   #3
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    Re: Chronic Pain Patient to the ER

    I guess I have been blessed as I have never signed a pain contract. I went in and told them exactly what I was on and showed them the papers that were printed out from my last visit and pump refill. I never gave it a second thought at the time, I could not sit, stand, or lie down as any movement caused me unbearable pain.

    The sad thing that I learned this weekend was that I have no way to contact my pain dr over the weekend/holiday as they are not on call. I have to have a talk with them about what I am to do in a situation like this in the future. My last pain dr or his partner was available 24/7. He was the one who took care of me for the first 4 years of my pain pump and my insurance made me move to this new dr 6 months ago. They never told me what to do.

    I feel terrible I had to go this route to visit the ER but I had no other options.
    Thanks for responding.

     
    Old 12-29-2014, 10:19 AM   #4
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    Re: Chronic Pain Patient to the ER

    My pain clinic is also unavailable much of the time...last I checked they were only open 3.5 days of the week lol. So, I'm glad to have that provision in my contract that other doctors can treat acute pain issues, as long as I contact them afterwards. They don't even specifically define the length of acute. I think its ridiculous when doctors both aren't available and don't allow their patients to get acute pain treatment, even for a new issue. Best wishes.
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    Old 12-29-2014, 08:41 PM   #5
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    Re: Chronic Pain Patient to the ER

    Hi. Thank you for sharing that positive experience (that you obviously NEEDED) at the ER. There have been so many negative ones shared that I sometimes feel that the ER is just not an option no matter what. Of course, that's not realistic either. In cases, just like you just shared, since we aren't Drs., it could actually be dangerous to NOT have a professional check us out when something so out of the ordinary is going on. I am so glad that the ER Dr. you saw realized that, and helped you. Since you don't know exactly what's going on with you yet, please share with us once your Dr. returns, and you find out what's going on with you. I am really grateful for people like you who share their experience, especially like an emergency on Christmas day, and how you went about it the right way, to see what you find out when your Dr. returns. (I apologize if the way i worded that is hard to understand. ) It's very encouraging to know that if "worse comes to worst", their still is a way to handle it. Thank you for sharing this.

    Last edited by karlee1010; 12-29-2014 at 08:44 PM. Reason: grammar error

     
    Old 12-29-2014, 09:21 PM   #6
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    Re: Chronic Pain Patient to the ER

    Hi, I too am a chronic pain patient with spine issues, both shoulders are bad and fibro.

    To me you may be dealing with
    Sciatic nerve issues which I've had. Can you try to take that lef/foot and bring it over the other knee gently stretching it out? Try ice/heat whichever works for you.

    Can you take advil? Ask ur dr if it's ok to add 800 mg advil. You'd be surprised how much it helps when there's inflamation. Good luck. Let us know. Cathy

     
    Old 12-29-2014, 09:41 PM   #7
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    Re: Chronic Pain Patient to the ER

    I'm glad you had a good experience and got some pain relief. I also like to hear people post positive ER stories. It seems like every CP'er has an automatic hatred for the ER and not matter which one they go to or what they go for they automatically get treated badly.

    I've lived in the same place for 16 yrs. now, between 2 of the biggest Hospitals in the Country. I've used the same ER all this time, and with my various conditions I'm in the ER about once a month and I've never been treated like a drug seeker or been treated badly because of my Chronic Pain.

    I hope your PM Doc figures out the problem on Monday.

    KK

     
    Old 01-01-2015, 03:14 AM   #8
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    Re: Chronic Pain Patient to the ER

    I can't begin to thank you so much for all your kind words of encouragement and to be honest, I need your support right now as I am scared beyond words.

    To make a long story short, I saw my pain dr Monday and thankfully he was compassionate and reassured me he had no issue with me being seen as I clearly have a problem. He first checked my Medtronic pain pump and all appears to be working and then examined me. He explained that he believes the pain is coming from the area above my existing fusion L3/s2 and below the T12 which is where my spinal cord was injured. This is what the ER docs thought too. He explained we were dealing with 1 of 3 things: inflammation of nerve root, injury to L2/L3 vertebrae, or problem with T12. He also mentioned that my Medtronic pain pump is threaded thru T12. He stated, the only way to find out what is going on is to have an MRI of the lumbar and thoracic area. He picked up the phone and the soonest the imaging could be done was on New Years Evening at 9 pm which we grabbed. Unfortunately because of the holiday we hope to have the results by Friday so he asked for a STAT report in hopes that he will hear something by then.

    In the meantime, he adjusted my pain pump meds upward, added oral breakthrus, instructed me to continue steroids and muscle relaxers and ordered no working, bending or lifting until we know what is going on.

    On Tuesday, I actually felt I might be improving and basically rested all day.

    Wednesday morning feeling pretty much like Tuesday I got up, took a shower and drove my daughter to work 10 minutes away from the house on country roads. I noticed with braking that the pain was increasing in my legs and by the time I made home I was beyond crazy with neuropathy in the legs and pressure in the back. However none of horrific spasms were there. As the day progressed chilling on the couch, the neuropathy has worsened. Now the neuropathy has moved into my lower leg and foot.

    After my MRI, hubby and I were chatting and all of the sudden I realized that this excrutiating fire foot pain is the same pain I had when they hit the spinal cord and before the Medtronic pain pump was implanted. To foot is burning on fire 100% of the time. Has my RSD/CRPS returned?

    So here I am reclining in my chair, unable to sleep, scared beyond words, knowing in my gut something is wrong, and running what if scenarios. What scares me more than ever is that my pain pump gave me my life back, I returned to work, and have been able to live again. In fact, I am being considered for a major promotion at work. Am I going to lose it all and be disabled again?

     
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    Old 01-01-2015, 09:03 PM   #9
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    Re: Chronic Pain Patient to the ER

    I am so sorry you are hurting so badly, somehow your story has made me feel like my pain is so insignificant , yes I hurt, very badly sometimes, but you are suffering, I hope you find relief soon.

     
    Old 01-03-2015, 11:44 PM   #10
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    Re: Chronic Pain Patient to the ER

    KittKatt, I hope that I did not make you or anyone else feel that your pain is insignificant as pain is pain and one never truly knows how one feels until they have walked a day in their shoes. I think right now I am just dealing with anxiety along with my pain and feeling alone. This board has allowed me to let out my feelings in an environment where others truly relate.

    With this flare, I feel like I am losing everything I worked so hard to rebuild. Over the course of becoming a chronic pain/spiney, I lost everything (friends, mobility, job, family) and then when my pain pump was implanted through pain mgmt., physical therapy, and a lot of hard work and determination I was able to rebuild my life once again.

    With this flare, my pain has not been controlled whatsoever and I am having pre-pain pump implantation flashbacks. I don't want to lose everything again.

    Anyhow, I had my MRI New Years Eve and now I sit waiting to get the results. The moral to this story is don't have an injury over the holidays as test results takes longer to be obtained due to staffing shortages.

    Hugs and Happy New Years!

     
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    Old 01-05-2015, 10:55 AM   #11
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    Re: Chronic Pain Patient to the ER

    I am so sorry about amount of pain you had. Good thing you met drs at ER who did what doctors suppose to do: help people, instead of judging you.

    I also had to go to ER many times due to uncontrollable pain and always was admitted and treated with respect. Good doctors always know who came to get more drugs and who has real medical emergency. Most people who in severe pain, have their blood pressure elevated. This shows drs your pain is legit.

    My PM Dr's office answers phone 24/7. I got severe pain at 3 am, called their service. Service contacted my Dr right the way and called me back saying they called ER car to take me to my hospital. Mind you, Dr office in NYC and i live in N. J.
    When I arrived, ER doctor told me that my PM called about me coming and he was on call with ER doctors, telling them what treatments to use, demanding reports on my doing.
    I was so happy and felt so safe. I understand how good you felt knowing you in good hands.

    Stay well and best wishes to you!

    Moldova

     
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    Old 01-05-2015, 08:15 PM   #12
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    Re: Chronic Pain Patient to the ER

    Quote:
    Originally Posted by karlee1010 View Post
    Since you don't know exactly what's going on with you yet, please share with us once your Dr. returns, and you find out what's going on with you.
    My MRI came back showing a clumping/entanglement of the nerves coming out of T12/L1. Due to the swelling they were unable to get an adequate view of the level and they were unable to see the catheter tip of my pain pump catheter so my pain mgmt. dr feels we will need to do further imaging of this area with a contrast medication.

    Every Wednesday, my drs pain mgmt team meets with radiologists, spine surgeons, neurologists, etc. to discuss challenging cases in detail. This Wednesday my case is being presented due to the complexity of my case to figure out the next logical step.

    In the meantime, he has put me on a higher dose steroid 60 mg. for six days, increased my breakthrough meds, and increased my pain pump again. If in one week I am still miserable, he might add another drug to my pain pump called clonidine.

     
    Old 01-06-2015, 10:07 AM   #13
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    Re: Chronic Pain Patient to the ER

    I sure do feel for you hon. I have RSD in my R knee through my foot. So, I am trying to fully understand what happened and why the pump was placed? You had RSD in one foot or leg, and then they decided to place a pain pump in your back. But while doing so, that is when they hit your spinal cord? And they continued to place the pump right into the area they hit? just what level in the spinal cord itself did they actually 'hit" and how badly? I am assuming that part of your "entanglement" would more than likely include at least some level of scar tissue too by now. The one thing I do know, just from my own experience and what was explained to me regarding scar tissue and the spinal cord itself? For some reason, scar tissue wont stay actually IN the spinal cord. If something gets damaged in there, it will eventually kick in what is Myelomalacia, which granualizes the scar/dead or damaged tissue then it slowly just goes away.They had to dig out what was basically a large "glob" of blood vessels from the C 8 nerve level of my inner cord, which did leave a lot of dead/scar tissue plus a weird empty space that eventually shifted/filled in(caused more damage/symptoms). While you could see the Myelo kick in on my two month post op MRI, it was gone by the 6 month MRI. So you should not get lasting scar tissue IN your cord, but it can grow onto the outter layers. And unfortunately around nerves and nerve roots. Scar tissue is nasty, and very fibrotic, and it can start growing very quickly even after a surgery. It only took 9 months for me to end up with what was called in my Neuros op notes "copious amounts of thick fibrotic scar tissue" just between my ACDF surgery date and the 9 months later when they had to go back in to place a plate and screws. So you having "some" would be very highly likely in that area too. So, I am thinking that those nerves and the "clumping" IS within some level of scar tissue. That alone could be the main trigger for the pain that is shooting back and forth, esp with "pushback, since things DO kind of shift with the push through the leg, and on up to that level of your back, just with the bone and muscle that is below and also attached to the spinal column and pelvis in that area.

    When was the last time they did a sympathetic nerve block on you, just to help to calm down the churn and burn that has now spread to the other foot too? This would also help to see if what you mentioned as "neuropathy is all part of the RSD process too, just by how your pain changes or does not change once that sympathetic is blocked for usually about six hours, or some could also be the spinal cord issues too. Just how badly damaged IS your spinal cord? I have deep damage to mine, way up at around C7-T1. Did your doc say just what is causing swelling and inflammation to even occur in that area? Or is this all caused by a possible shift of the pump where it enters your spinal, and of course something fired up those nerves too. The fact that you are feeling a "push back" type of pain all the way up to that inflamed area, that would sound much more upper nerve level involvement than 'just" your RSD, unless of course your RSD actually runs that high?

    I was wondering something regarding the MRI you had done? I was under the assumption still, that they could not actually even do an MRI once you had either the pump or the stimulator implanted? Have they changed what is used, as in no metal anymore? Just wondering, thats all. It really sounds like you have a great Doc in charge of your care. I sure am hoping for you that they can come up with some way to help with what has to be a horrid situation for you to have to live in right now. Take care, rsdsufferer
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    Old 01-06-2015, 08:21 PM   #14
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    Re: Chronic Pain Patient to the ER

    Quote:
    Originally Posted by feelbad View Post
    I sure do feel for you hon. I have RSD in my R knee through my foot. So, I am trying to fully understand what happened and why the pump was placed? You had RSD in one foot or leg, and then they decided to place a pain pump in your back. But while doing so, that is when they hit your spinal cord? And they continued to place the pump right into the area they hit? just what level in the spinal cord itself did they actually 'hit" and how badly? I know this is very confusing. Due to numerous back surgeries and unresolved pain, I was encouraged to undergo the spinal stimulator trial. While inserting the stimulator, they hit T12. They stopped the stimulator trial due to paralysis, loss of bowels/bladder/nerve damaged. As months passed, I developed RSD in the right leg and foot. Then they inserted the Medtronic pain pump right above T12.I am assuming that part of your "entanglement" would more than likely include at least some level of scar tissue too by now. The one thing I do know, just from my own experience and what was explained to me regarding scar tissue and the spinal cord itself? For some reason, scar tissue wont stay actually IN the spinal cord. If something gets damaged in there, it will eventually kick in what is Myelomalacia, which granualizes the scar/dead or damaged tissue then it slowly just goes away.They had to dig out what was basically a large "glob" of blood vessels from the C 8 nerve level of my inner cord, which did leave a lot of dead/scar tissue plus a weird empty space that eventually shifted/filled in(caused more damage/symptoms). When the accident first happened, MRI depicted a lesion at T12. A repeat MRI was done one month later after the spinal cord injury which showed no change in the lesion. Since then I have not had any further MRIs as I was told nothing could be done for me and I had to find a way to live with my disability. I was encouraged to try the Medtronic pain pump as my last option and thank goodness I went ahead with it as it gave me enough relief so that I could live a fairly normal life. Sure I had spells here and there but the pain pump was a miracle worker for me. Since I have had time to digest what my dr told me yesterday about the clumping of the nerves, I too have begun to wonder if this clumping could be scar tissue as well.While you could see the Myelo in on my two month post op MRI, it was gone by the 6 month MRI. So you should not get lasting scar tissue IN your cord, but it can grow onto the outter layers. And unfortunately around nerves and nerve roots. Scar tissue is nasty, and very fibrotic, and it can start growing very quickly even after a surgery. It only took 9 months for me to end up with what was called in my Neuros op notes "copious amounts of thick fibrotic scar tissue" just between my ACDF surgery date and the 9 months later when they had to go back in to place a plate and screws. So you having "some" would be very highly likely in that area too. So, I am thinking that those nerves and the "clumping" IS within some level of scar tissue. That alone could be the main trigger for the pain that is shooting back and forth, esp with "pushback, since things DO kind of shift with the push through the leg, and on up to that level of your back, just with the bone and muscle that is below and also attached to the spinal column and pelvis in that area.

    When was the last time they did a sympathetic nerve block on you, just to help to calm down the churn and burn that has now spread to the other foot too? I have not had a sympathetic nerve block done since insertion of the pain pump 4 years ago as I have been able to live life fairly comfortably for a chronic pain patient.This would also help to see if what you mentioned as "neuropathy is all part of the RSD process too, just by how your pain changes or does not change once that sympathetic is blocked for usually about six hours, or some could also be the spinal cord issues too. Just how badly damaged IS your spinal cord? I have deep damage to mine, way up at around C7-T1. Did your doc say just what is causing swelling and inflammation to even occur in that area? We have no idea what happened to cause this flare up.Or is this all caused by a possible shift of the pump where it enters your spinal, and of course something fired up those nerves too. The fact that you are feeling a "push back" type of pain all the way up to that inflamed area, that would sound much more upper nerve level involvement than 'just" your RSD, unless of course your RSD actually runs that high?

    I was wondering something regarding the MRI you had done? I was under the assumption still, that they could not actually even do an MRI once you had either the pump or the stimulator implanted? Yes they are able to do an MRI with a pain pump. MRIs actually stall the pump but it does reboot itself afterwards. They have to take frequent breaks during an MRI so that the pump does not overheat.Have they changed what is used, as in no metal anymore? Just wondering, thats all. It really sounds like you have a great Doc in charge of your care. I sure am hoping for you that they can come up with some way to help with what has to be a horrid situation for you to have to live in right now. Take care, rsdsufferer
    Thank you so much for your feedback and thoughts. I am very concerned about this clumping and what it means for me. Due to the severity of the pain at the 2 week point, I am afraid that by pushing on with my life after the pain pump was implanted that I might have inadvertently caused myself further life long damage. I guess this is why pain medicine, pain pumps and stimulators can be dangerous...it can cover your pain, let you live life and it can make you think you are a normal person who can do almost anything.

     
    Old 01-06-2015, 08:30 PM   #15
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    Re: Chronic Pain Patient to the ER

    No, I can't take advil at this time since I am on steroids and it upsets my stomach. Thank you for the suggestion as I am desperate to try anything. Tonight despite it being so cold, I am laying on ice trying to get some relief and suprising that appears to be helping some. Hugs and I hope you pain is low today.

     
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