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NS wasn't nice to me today:(

kamgramkkamgram Posts: 483
edited 08/13/2012 - 4:22 PM in Upper Back Pain, Thoracic
Okay my forum friends, I am new and still learning and need to finish putting all my info in Bio. I need help in deciding what to do about this horrible pain I have been in for last 48 hours. I had discetomy, decompression and lamenectomy on May 24 2012 and have had complications and pain since the surgery at the T7-8 level. My MRIs have shown numerous other issues from C-1 to S-1 also. But the past 2 days the pain has been agony and hurts much worse than before surgery and even worse than the days following surgery. It is a sharp pain which hurts when I move, breathe, twist or bend. No amount of pain medication or muscle relaxer or nerve medication seems to even dull it at all. I started having increase in pain about a week ago and my Gabapentin was increased twice but no help. The surgeon is sending me for another MRI next week to see if I have reherniation. I was having pain on left side that wrapped around left side of ribs and chest pain under left ribcage. Well now am having pain on right side as well that wraps around and even my shoulders are painful. I am scared to go through another surgery if needed. It was all I could do to build up courage for this one. I have also had lamenectomy on L4-5 in 1994 and then again in Oct. 2008 and reherniation repair in Dec. 2008. When surgeon went in this time posteriorly he said he ran into problems when he found a tendon had wrapped itself around the spine and had to move to even perform surgery. He said in all his surgeries he had never seen this. Has anyone else had this or heard of it. I just would like to know what ya"lls thoughts are on repairing a reherniation. I have been on maximum dosage of Nucenta since surgery and was given Oxycodone for this pain but makes me so nauseous I have to take phenergan with it for breakthrough pain. Im existing in a foggy state:( Please help me understand some of the issues with thoracic spine as mine have always been lumbar but this is a totally different and worse pain for me:( Thanks for all you do with this forum...it help so much!!!!!!!

I had an MRI and blood work July 13 to check for reherniation and infection. I will not know anything until I go back to Duke July 18 and hope and pray that there is no reherniation. I will keep in touch and let you know what the results of tests are. Thank you for being here to listen to us and offer comfort and advice. It means alot to me.

I am sitting here looking over the written MRI report and it shows several post-surgical changes:( It appears that I may have inflammation and or infection at the T7-T8 level and may have a pedicle fracture at T8 and suggest a CT scan to correlate. I have been reading up about these issues and they scare the daylights out of me. I don't want to have to have any surgery to debride the wound or a PICC line for IV and scares me even worse to think there may not be anything that can be done. The pain has been at a level 8 all day today and sciatica in right leg has been terrible. My labs showed that my CRP is high as well as my Sed rate but WBC is normal but RBC is high???? The diagnostic center left a voicemail with surgeon on Friday the 13th to see if he wanted CT ordered but never heard from his office so have to make 4 hr. trip to Duke and may have to schedule a CT for later date. I know I should not complain because I read where some people have to wait months for tests and appts.and at most I wait weeks but when you are having severe pain any amount of waiting is torture.

Please keep me in your thoughts and prayers tomorrow.

Love and hugs


Love kelli


  • Kelli, I am sorry you are in so much pain! I am not sure what to tell you! I think I would call the neuro and see what he says, maybe you could get in sooner for the MRI, I understand your pain, I too have the wrap around pain just to my right side though, I have muscle spasms and it feels like I am having heart attack sometimes. It does go into my right shoulder too, and down my right arm. If you have to maybe you should go to the ER if it get so bad you can't stand it, I am on a pain patch it seems to help, good luck let us know how you are doing! Lela
  • Thank you so much for sending a message back to me. I am new to forum but having a hard time getting anyone to talk to me:( I also have the chest pain that feels like heart attack. I actually went through stress test and heart cath but showed no cardiac problems(thank the Lord). It was during the heart cath that the pain in thoracic region became so severe that I cried during the 3 hours I had to lie perfectly still with head at 30 degree angle. When I was still having that pain 3 weeks later I had a appt. with my primary and she did x-ray and was concerned enough to send me to my neurosurgeon who did my L 4-5 lamenectomy in 2008. I was then sent for MRI in Feb. which showed moderate to advanced disc degeneration and moderate disc narrowing. Large caliber midline and left para midline disc extrusion casuing left sided thecal sac effacement and midline left para midline cord effacement of moderate degree. Left T8 nerve root and cord effacement is evident.Moderate T8-9 and mild T9-20 disc degenration identified with anterior disc bulging.Hypertrophic bony changes are identified dorsally at the T-10 T-11 facet joints causing effacement of the posterior thecal sac. Mild to moderate multilevel degeneration disc disease changes throughout the mid thoracic spine .
    This scares me so bad because when I had MRI in 2008 it didn't show any of these issues of thoracic spine. My oldest brother is 61 and is totally incapacitated with DDD that is inoperable. I have another brother 57 who had cadavar C spine surgery and is diabled. My sister 46 has the same symptoms in neck but is afraid to go to doctor and my youngest brother is disabled with joint and knee and blood disorder problems. I know it is just a matter of time before I will be in the same boat as my older brothers:( My children are 27 and 21 and my 21 yr. old already has issues with sciatica and back problems and takes naproxen daily. I have not worked in 2 months and go for the MRI this week and see surgeon on July 18. Oh I forgot to mention that my neurosurgeon does not do thoracic surgeries if there is calcification of disc so I was sent to Duke University to a specialist who is the only one in NC who does this type of surgery. It is a 4 hour trip from home and with pain levels so high I can't ride all the way down there and back in one day so we have to spend the night. It turns into a 2 day ordeal every time I have an appt.
    I am sorry to make this so long but I am frustrated and scared and don't know where else to turn. I dont like to talk to my hubby to much about pain bacause he had heart failure Feb. 2011 and my son had to perform CPR to bring him back and he had quadruple bypass. I try not to stress him or my son out too much so try not to complain. I know they get tired of hearing it or seeing me always having bad days. I hope that I can keep in touch with the forum and that we can be there for each other.

    Love, kelli
  • I go to NS tomorrow morning to go over results of MRI I had done last Thursday. The MRI was a horrible experience in itself. They scanned all 3 levels of spine w and w/o contrast. It took 2 hours, of lying flat on back and not moving. They had to tape my feet together due to muscle spasms making them move. I was crying in pain by the time he finished. He literally had to lift me to sitting position where I had to sit for 20 minutes before I could even move. This was after taking a Xanax and 100mg of Nucenta:( I have been having worsening pain since discectomy of T7-T8 on May 24, and also new symptoms. I have severe sciatica in right leg and hip and knee really hurt. I am also having numbness in both hands at night when laying down.

    Please keep me in mind tomorrow. I don't know if I am more worried about what he will see or what he wont see. I just want to know why my pain is increasing since surgery and I pray no more surgery. Thank you all for always being here to listen and encourage me:)

  • I went to visit my NS today and the news was not what I wanted to hear. I found out I have a herniated disc in C6-C7 which is compressing the spinal cord and causing pain and numbness in my arms. He is wanting to do a nerve test which he said is very painful. This scares me to death. I also have herniated disc at L3-L4 and since I have had 3 surgeries at L4-L5 level I will have to have fusion from L3-L4 to S1:( I also have what he thinks is scar tissue from thoracic discectomy in May. He is not sure and said it may be infection or inflammation but only way to know is needle biopsy. I am going to try and have ESIs but I know that this is just putting off the inevitable. I was in shock today and my NS was so sympathetic. This is the first time I have ever seen any true feelings from him. He talked to me for 45 minutes and explained everything. I should have taken someone with me because I was so upset that by the time I got to the car I had forgotten most of what he said.

    I am at a loss. I did not expect the news to be so bad:( I don't even know which way to turn right now. My hubby said we will just take it one day at a time and we will make it...we always do....but I don't know this time;( I know there are so many out there who are so much worse off and I honestly don't know how you do it everyday. I admire you.

  • It's so hard to hear that kind of news! Please know you are in my prayers!

    Your hubby is right--one day at a time, and you WILL make it! :)

    I pray your biopsy is negative and your ESIs are successful so you are done with pain!
  • Sugarplums, thank you so much for the prayers and for your encouragement. You will never know how much it means. I am going to just take one day at a time. That is all I can do. I have to be strong for my kids and grandson. They know when I am upset and they get upset and the whole household is upset:) Just not going to worry about the job anymore. I am just driving myself crazy and can't do anything about it anyway. Thanks again for cheering me up:)
  • Today is an awful day for me.... Could you please say a prayer for me, too?
  • jellyhalljjellyhall Posts: 4,372
    edited 08/15/2012 - 10:04 AM
    Saying a prayer for both of you. *hearts*

    Kelli, I am not sure which nerve test he is talking about that is very painful, but if it is EMG and nerve conduction tests, then that is not too bad. Some people say it is painful, but I have had it done twice and found it quite do-able. Not how I would choose to spend my day, but ok and worth it to find out information about what is going on.

    Keep taking it one day at a time.

  • kamgramkkamgram Posts: 483
    edited 08/15/2012 - 5:10 PM
    Jellyhall, the test is an EMG and thank you so much for your encouragement. I have been through so many tests and procedures that with your info I think I will be okay and still taking it one day at a time. I will report after the test on Aug. 22 and let you know how it goes:)

    Sugarplums, I am so sorry sweetie that you are having a bad day. I have been praying for you all along. I think the bad days are worse after I have had a few good days. I almost think that maybe things are getting better then BAM bad day:( Just remember to take it one day at a time and if that is too much to handle then take it hour at a time but just dont give up. We are here for you and all you have to do is reach out:)

  • Your prayers and ecncouragement mean everything to me! It's been just a terrible depressing crying day.I was hoping I would just zonk out and sleep it away, but here it is at 1:15 a.m., and I'm still awake and crying!

    Kelli, I had an EMG also and it didn't hurt, it was just like a TENS unit buzzing sort of sensation. When I asked the doc why it didn't hurt like I expected, she said that some docs feel they have to do it like that but they do not need to turn it up that high. She also said that some patients try to foil the test by saying they don't feel anything when they do, and that will cause uneccesary pain, after all it is electricity going through your nerves! If you have had a TENS, or if you have had E-stim during a PT session (commonly used with heat or ice packs), that is basically what it felt like for me.
  • Hello ladies,

    Take a deep breath, everything will work out, stress is going to make you hurt worse. Keep taking everything one day at a time. Even just one hour at a time. Best of luck and i will keep you in my prayers.
  • Hi paininohio, thank you for your post. I seem to forget to just stop and take a deep breathe and realize that when I am stressed I hurt so much worse...I needed that little reminder. Thank you so much and I hope you are doing well:)

    Sugarplums, I hope today has been a better day for you. I am praying for you and please just stop a second take a deep breathe and realize that this to shall pass.

  • Dear Kelli, just saw your post, wow, I am sorry, I too have cervical stuff going on so I understand how you feel this roller coaster of pain is no fun, I am waiting to see my NS too and it seems like forever when you are in pain!
  • Thank you so much Lela1122 for you kind words today, You have no idea how they helped. I try to be positive but this weekend has been very hard for me. I am realizing my limitations and how they affect not only me but my loved ones. I kept my 2yr. old grandson last night so my daughter could have a rare night out with her cousin. My hubby went to bed at 10 and of course Kamden woke up at 11 screaming from a night terror and only wanted Grammy to hold and comfort him so I picked up my 40 lb love of my life. I immediately felt horrible pain in my neck and lower back and had to get my hubby up and call daughter to come home asap. This morning I woke up with horrible pain in entire spine but especially in neck and down right arm. I was determined not to let this ruin the plans I had made with daughter. I took a warm bath and pain meds and we made our way to home improvement stores to price stuff for bathroom which must be fixed asap as floor is falling through in front of shower;( We went to first store and after 15 minutes I was having such horrible spasms in lower back and legs that we had to leave. We then went to lunch and took more pain meds and went to second store and only took 10 minutes for pain to kick in high gear so we had to leave. Hearing my daughter trying to explain to a 2 yr. old why we have to leave because of Grammy's booboo. I try not to let my limitations affect me but after this weekend I realize that they have and seem to be worsening. This is going to be an interesting renovation on the bathroom with me having limitations and my hubby also has limitations since open heart surgery, lol. Have been praying that maybe the Lord will see fit to put someone in our life who can do this type of work and we can get done quickly instead of having to do weekend work. I know He will make a way for us to get it done one way fo another. Sorry for rambling on but feels good to vent and dont know of any better place than here where ya'll know exactly what I am dealing with.

  • Okay, today I had my nerve conduction test and EMG of both arms and neck. The good news is I dont have a pinched nerve in neck and I dont have carpal tunnel either. The tests were not as bad as NS lead me to believe. Thanks Sugarplums and Jellyhall for the info on the test not being painful...YOU WERE RIGHT....lol Now the bad news is that I have pinched nerves in both elbows which I was totally not even thinking was the problem. I had surgery in 2007 on left elbow for tennis elbow and numerous injections on the right over the past yr. The doctor said the left is severe and right is moderate to severe, but they think they have caught is early and am going to see an orthopedist for treatment which may include some kind of brace???on elbows while sleeping. If this does not work then will discuss surgical intervention but we will not go there now:) They dont want me doing things that will worsen symptoms including typing on computer but right now this is my lifeline. I am home alone all day and can't do much since thoracic surgery in May and spend lots of time on computer so will be non-compliant...lol I will be having an ESI on lumbar Sept.5th. Please pray that this will help and I can have the thoracic ESI and will not have to face fusion anytime soon. Thanks to all of you for your support and encouragment. You are truly a blessing to me and hope that I can help someone along our journey together.

  • jellyhalljjellyhall Posts: 4,372
    edited 08/22/2012 - 9:31 PM
    I am so pleased that you found that the EMG and nerve testing was not too painful.

    I think it is good news that the compression is in your elbow, not your neck.
    I have friends who have had to wear the wrist brace for carpal tunnel both at night, and during the day when it is bothersome.
    I would imagine that it is similar for the elbow, and that it holds it in the best possible position to reduce the compression of the nerve.

    Once you know the optimal position to keep the elbow in, you may be able to set up your keyboard in a position where you can hold your elbows in that position. If you have to keep your elbows straight, that may mean sitting away from the keyboard with your arms straight. I hope you are not short sighted! Lol!

    I hope that your ESI on the lumbar spine will provide some help, and that a thoracic ESI will do the same.
    You have problems in so many places; far more than your share.
    Keep positive and hoping that soon things will be much improved and you will enjoy life again.

    Gentle and caring hugs
    >:D< >:-D< :hug:
  • Thank you for the kind words and encouragement. They always make be feel better:) I actually have contacts that one is for long distance and other is for near, cant remember medical term...lol I guess I will type with my long distance eye open and close the other...haha I will keep in touch and let you know how the ESIs work because I do not want a fusion:(

  • jellyhalljjellyhall Posts: 4,372
    edited 08/23/2012 - 10:15 PM
    one eye closed!!!

    How useful to have each eye able to see different distances. Like natural bifocals!! (Haha! only joking!)

    I know that feeling of not wanting a fusion - especially a thoracic fusion!

    I have had a lumbar fusion, am facing a 2 level cervical fusion and do have problems in my thoracic spine. I don't ever want to need surgery there! My neurosurgeon has said that although I do have protruding discs in my thoracic, he is not suggesting surgery as it is very painful and very long to recover from. He has said that we could try ESIs to help with my symptoms. I am needle phobic!! I am managing with the pain at the moment, but good to know there is something we can try if I reach the point that I can't cope. I must say that my needle phobia is better than it was since my lumbar fusion!

    Now look after yourself and don't over do it.

    Gentle and caring hugs
    >:D< >:-D< :hug:

  • Hahahaha...I like that...natural bifocals:) Sorry I should have specified that my fusion would be lumbar L3-S1. I had 3 lamenectomies at L4-5 and now with herniation at L3-4 all they can do is fuse 3 levels:(

    This has been a very difficult week for our little community. My doctor of 27 yrs. didnt show up for work Monday and I called office to give report on Cymbalta she had started me on and answering service said that the office was short staffed and they were closed. I called again Tu. and they said she was out sick and office was closed. Wed. I called again and was told that the office was closed and were not taking calls. I have gone to her forever and she never once closed the office. Thusday while on FB I started noticing messages about her and husband were missing. I then got a call from a friend who works at the office and she said I needed to come get my families medical records that the office was closed and that she was missing after not returning from vacation. I was stunned and went and filled out releases for myself, hubby, and both kids. Well this evening during the 6oclock news they reported that they found them in Galveston Tx. and they were deceased from possible overdoses of sample meds from drug reps that were found in the room with them, This doctor has cared for my children since they were born and now they are 27-21. She has been there for me since beginning of back issues. She took care of my parents and even offered to treat my mama free is she would stop smoking. Unfortunately om didnt and she was there to tell her she had lung cancer and cried along with us. She had thousands of patients and unfortunately alot of her long time pain patients can't get new doctors because of their narcotic use. The office I worked for has taken in 100 new patients since yesterday but unfortunately wont take any on narcotics. This breaks my heart for these people. Please keep us in your prayers:(

  • jellyhalljjellyhall Posts: 4,372
    edited 08/25/2012 - 7:25 AM
    that must be so sad and at the same time, so stressful for you.
    I can understand that having walked your road of back issues with her, it must be hard to have to start all over again with someone new. I will pray that you will find a doctor that you and your family have a good rapour with.
    We can develop very close relationships with our doctors, especially when we have been seeing them for a long time and other members of our family have also been treated by them.

    I will be praying you you Kelli.
    >:D< >:-D< :hug:

  • Hi Jellyhall, thank you for the kind words. It has been very stressful and I am devestated along with alot of other people. I am fortunate to work for a family doctor who has been treating me this year for my back problems and prescribes my pain meds instead of having to find a PM for now. I love her and we are close since I work for her so transition to her as my primary will not be hard but will still miss my doctor who knew me even better than I knew myself sometimes. There was just stuff: anxiety, depression etc. that I did not want other employees to know about nor that I wanted to discuss with doctor I work with. This should not be an issue now since I am not working there for now. Thanks so much for your encouragement:) I hope you are doing well:)

  • MarniMMarni Posts: 45
    edited 08/26/2012 - 3:36 AM
    Wow Kelli, that's crazy! What a horrible situation (all around). I'm so glad you found another doctor quickly - and someone that you like and trust. Here is Canada, you wait months to see specialists, to have non-emergency procedures (ie: rhizo) and changing GPs is not that simple. My next ESI under fluro - are scheduled for November!!
    So, I am super happy for you. Don't worry about everyone else in the office, remember "one issue at a time". Right now, you're getting yourself and your family set up with the new doc and focusing on managing your pain. That's enough!
    As always, sending you good vibes and hugs!
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