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Hope to get answers today

Hello Everyone- it's been a little bit since I last posted. The post op(s) complications have continued & I've not gotten a lot of answers. The wound vac was on for nearly a month before the wound Dr took it off to give me a little break & be able to assess my pain. This was at the suggestion of my NS, who thought that the vac may have been contributing to the pain in my right leg. He said, the only way to assess, was to have a break from the vac & see how I responded. During the break, I was first ordered wet to moist dressing, with daily changes. When the packing was taken out each day, the gauze deepest in the wound & in the tunnel that had formed in the wound, would come out with a light green drainage on it. Last week at the wound center, the Dr said there might be some pseudomonas in the wound & added Dakins (a bleach based solution) to the daily dressing changes. The outside of the wound looks to be healing around the tunneling, so he warned that he may have to open the wound up a little bit if that continues. Unfortunately, the theory of my NS has not proven to be true, as the pain on my right has persisted (& gotten worse) with the vac off. Two weeks ago, at my NS appt, he said that if pain got worse or extended down into my calf, to let him know so that he could order a new MRI. Well, I tried to let him know by calling 2x last week and leaving messages for the Dr & PA, that the pain was much worse and extended into my calf. Nobody returned my calls! When I went to my appt at the wound center, I let the wound Dr know this & he ordered an MRI based on the pain and persistent low-grade fevers. I'm having the MRI in a couple of hours. The NS office called on Friday to confirm my appt for this afternoon & I told the girl about my calls not being returned by the nurse or PA & having to get an order for an MRI from the other Dr. I confirmed my appt for this afternoon & told her that I would be addressing this with the NS at my appt, as I was trying to follow his orders to call & there are times that I am having difficulty walking again. My concerns about the possible causes for this pain are: return of seroma, reherniation, or infection in disc space. I have had continued low grade fevers and blood work came back with indicators of infection. I say "continued low grade fevers," but I don't know what my fevers would go up to if I weren't taking the acetaminophen. If I don't take my pain medication (w/acetaminophen) every four hours, my pain gets really bad & fever goes up. The home health nurse has been concerned about persistent HR in excess of 100 every day. That doesn't really concern me bc I know my body & I know that my HR goes up when I am in pain. The pain and fevers concern me. I am back to being in 24/7 pain. Should I sneeze or cough, which I try to avoid (but has been difficult since I caught a bug off my daughter & am very congested), it causes excruciating pain and I feel like my legs are going to go out from under me. Turning over in bed, getting up after laying down for a while or sleeping, and getting up from sitting position is very painful in lower back, right hip, right buttock, and leg. Just sitting or laying down is painful in lower back, buttock & hip area, but my thigh will also start burning and I get nerve pain in my calf.

This is all just very frustrating bc this started out as something that was going to be a "2 week down time." I knew full recovery would take a long time, but I expected to be back to work and I am going on 2 months out of work. I have recently exhausted all of my paid leave & only have just over a month of FMLA time left. NS said it would be a good idea to get my Short Term Disability paperwork completed. I'm in the process of that, but I'm leery about a release of all medical records to employer. This release does not specify that they are records related to this injury/claim, it is a broad release that includes full medical history. While I have no issue with all records related to this injury/claim, any & all medical records, pharmacy records, etc seems to be a violation of privacy. There are things in my medical records history that have nothing to do with this injury/claim & are none of my employer's business. I'm not sure yet how I am going to handle that. Any one else have this issue?

I hope you all have a peaceful day and your recoveries are going well. I hope to have some answers today, after the MRI,which I have to go get ready for now.

Thanks,
Lauren
8/28/14 Discectomy, Laminectomy, Foraminotomy L5-S1
9/15/15 Surgical Debridement of infected surgical incision & drain seroma; wound vac applied
10/21/14 L5-S1 Osteomyelitis & Discitis; 10/23/14 Bone & Tissue Biopsy = MRSE
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Comments

  • You do have the right to limit the medical information released to anyone. You can specify what you want to release and what you don't.
    I'm sorry that you are stil dealing with ongoing pain and issues. I do hope that you get some answers today.
  • Radiologist found L5-S1 osteomylelitis! NS seemed a little panicked at my appointment later in the afternoon, after he got the results. A needle biopsy is supposed to be scheduled for today or Thursday to confirm. I'm pretty upset about this because I have been trying to tell my doctor's (NS, Wound Dr, ID) that something was wrong. In all fairness, I only saw the ID Dr the one time, when he ordered a bunch of blood work,etc, which took well over a week for them to get back. Those results are now 3 weeks old, but I had no follow up from him. The NS I see every 2 weeks & the wound Dr, I see every week. I've been telling them that my pain has become horrible & getting worse. I called the NS office last week 2x, as he had told me to if pain got worse or extended to my calf, but no one called me back. The wound Dr I have seen every week only makes cracks about why am I not smiling. I've tried repeatedly to tell him about the pain & feeling sick, but it's always been brushed off. Pain meds don't touch the pain, especially at night! I'm glad I finally have an answer, I'm just really frustrated because these doctors knew there had been infection there & it took this long to investigate further, when I was clinically presenting with symptoms & had labs with markers of infection & inflammation. Anyhow, I'm sorry, I am venting. I'm just upset about this. Im still not on an antibiotic bc of the need for biopsy, so it's just more waiting. Meanwhile, this infection will continue to grow, causing more pain, & possibly causing more damage. Thanks for listening.

    Sandi- thank you for the reply. I am ended the release to say "medical records related to this injury/claim." Let's just hope I don't get denied because of it. We'll see.

    Thanks again everyone,
    Lauren

    8/28/14 Discectomy, Laminectomy, Foraminotomy L5-S1
    9/15/15 Surgical Debridement of infected surgical incision & drain seroma; wound vac applied
    10/21/14 L5-S1 Osteomyelitis & Discitis; 10/23/14 Bone & Tissue Biopsy = MRSE
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  • Lauren,

    Oh my goodness! I can't believe how much you have been through since this "minor" surgery. You have definitely had the patience of a saint, but I think I'd be demanding at this point. Make sure you are your own best advocate. You know your body and your doctor does not seem all that caring or concerned, when infection should get him moving. I would probably demand to see the ID doc again and quite possibly the best NS you can find. I know my NS would never have treated me so casually, and I had nowhere near the complications.

    I truly hope this is finally the answer you have needed and that you can get the relief from pain that I know you so desperately want and need.
    Christina
    Left leg radiculopathy/sciatic pain
    L5/S1 microdiscectomy - May 30, 2014
    L5/S1 microdiscectomy - Aug 14, 2014
    L5/S1 TLIF - Sept. 24, 2014
    Left-side screws/rod removed along with bone fragment Dec. 29, 2014
  • The bone biopsy is scheduled for tomorrow morning. The NS had told me late yesterday afternoon, that the hospital would call to tell me when it was scheduled for & when to start fasting. Well, hospital called this morning & had wanted to schedule for today, but I had just finished eating an English muffin & drinking coffee (I had not yet been told a biopsy time or fasting start time). Because I had just eaten, they said it couldn't be done until tomorrow morning & to start fasting at midnight. What a mess! It seems like the right hand doesn't know what the left is doing! I had also already taken my Mobic this morning. Again, the NS knew I was taking this medication, but did not tell me to stop it. Now, I'm told by the hospital not to take it tomorrow morning.

    Christina- thank you for your note. I am becoming more demanding, which is why I pushed the Wound Dr to order this MRI. I also told the NS yesterday that I was very upset that he had instructed me, at my appointment 2 weeks ago, to call & let him know if my pain had gotten worse or extended to my calf, so that he could order an MRI, but the nurses nor the PA returned any of my calls last week. I had the MRI report faxed to my Infectious Disease Dr first thing this morning & called the office to let them know what was going on. They said to make sure that they get results of the biopsy, which I will. After the results are in, I will be going back to ID Dr as soon as results are in. Thanks again for your support & well wishes, it means a lot, as this is really beginning to get me down. :(

    Lauren
    8/28/14 Discectomy, Laminectomy, Foraminotomy L5-S1
    9/15/15 Surgical Debridement of infected surgical incision & drain seroma; wound vac applied
    10/21/14 L5-S1 Osteomyelitis & Discitis; 10/23/14 Bone & Tissue Biopsy = MRSE
  • I am SO , SO sorry for all that you are going through and for the backhanded , one hand doesn't know what the other is doing approach to how this all is being handled....
    I hope that this infection clears, quickly, and that the bone biopsy goes smoothly tomorrow.
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  • I do hope things go well for you tomorrow and that they can start to get a handle on treating you. It sounds like they owe you a major apology and explanation.
    LindaMac
  • Thank you both for your support. To say the least, I'm pretty disappointed about how all of this has been handled. I've bern trying to tell the Dr's that I've bern in massive amounts of pain, but I was made to feel like it was in my head or being exaggerated. My NS friend, from out of State, saw just a few of the MRI images that I texted to him today & says he is 100% certain that I also have discitis. There is nearly no space between the L5 & S1 vertebrae & they look to be almost bone on bone. He also says there looks to be permanent damage to the endplates, which will set me up for future surgeries. Surprisingly, he (as a NS & friend) is telling me that I need to seriously consider seeing an attorney. I am not a litigious person, but if this has done permanent damage & was preventable, I am seriously considering it. I've exhausted all of my paid time off & only have about 5 weeks of FMLA left. I am filing for my ST disability insurance, but my job will not be protected after FMLA is exhausted. I am considering contacting our CEO to ask that my FMLA be extended, if needed, so that my job is protected. I shouldn't have to worry about that & I'm trying not to. I had a little talk with myself & God today & put things in perspective. I am reminding myself that a job is just a job. The most important thing is that this can successfully be treated, with no more complications & also be treated successfully at home, so that I can be here for my son. Getting better & being here to be his mom are the most important things. If my employer is not going to stand by me, after 9 years of dedicated service, despite a raise freeze being in effect for the past 8 years, then maybe that's not where I'm supposed to be.

    In other news, I gave in and called the PM Dr's office today to see about changing my medication. I have not done that in nearly 2 years of being under his care. The pain has just gotten so very bad, especially at night. There are no words for the pain, especially in my lower back, hip, & thigh. I had a really bad night last night. When I got back up at 6:30 this morning, I almost hit the floor. I felt like my back, leg, & hip couldn't support me. I'm taking my medication as prescribed, but it's not helping. I left a message on the nurse's voice mail, but did not get a return call! Now, tomorrow I will have this pain & the pain from the biopsy. I'm hoping the procedure won't cause too much pain afterward. Has anyone had this procedure? If so, I'd love to hear from you, so I know what I'm facing.

    Thanks again for all your support! I wish the best to both of you!
    Lauren
    8/28/14 Discectomy, Laminectomy, Foraminotomy L5-S1
    9/15/15 Surgical Debridement of infected surgical incision & drain seroma; wound vac applied
    10/21/14 L5-S1 Osteomyelitis & Discitis; 10/23/14 Bone & Tissue Biopsy = MRSE
  • Just An update: I had biopsies of tissue & bone yesterday. Luckily, I was heavily sedated for the procedure. The Radiologist said that, when he got the needle close to the bone, I jumped, so they administered pain medication & additional sedation. I am cautious saying this, given my recent experiences, but I feel like I could trust the Radiologist. A very close friend of mine is the Director of Operations for the Imaging Department at the hospital & she says that he is a very good Dr (also used to be a surgeon). Really, everyone that took care of me yesterday including the nurses & anesthesia team, were wonderful. When the Radiologist came to talk to me for the procedure, he was extremely thorough in going over every step of the procedure. He warned of the possibility of not being able to obtain all of the samples that he wanted, but said he would do his very best. He said he planned to send anything & everything he got out of me to the lab, including bone, tissue, fluid, etc. He also had prepared 2 plans, ct guided & fluoroscopy guided, & had both rooms prepared. He said he believed fluoroscopy would be the best, but was prepared to move to ct, if he could not get the views that he needed. He gave me plenty of time to ask any questions or voice any concerns & never made me feel rushed. When I woke in recovery, I was in severe pain that extended all the way down thru my toes on my right side. It hurt so badly, I was afraid to move my right leg & couldn't help but sob. The nurses administered two doses of Diludid through my IV, but when that didn't help, he came back to assess me & ordered a dose to be given intermuscularly. That finally took the edge of the pain enough for me to calm down a little. The nurses then sent my boyfriend to pick up my regular muscle relaxer & had me take it right before they sent me home.

    It was a very bad night last night. I don't know why, but the pain is at it's worst at night (& when I first get out of bed). I did see my PM Dr today. When the nurses found out that my PM Dr's nurse hard not returned my call the other day, they called before they sent me home & told them that they had to find a way to fit me in today because there is a lot of infection & inflammation & my current med was not managing the pain. My PM Dr looked at the report & the images & changed my medication to Diludid. He also went over the images with me, which is something my Neurosurgeon didn't even do! I have not even heard from my Wound Dr directly & he was the one who I had gotten to order the MRI. I also know that the Radiologist that read my images called him immediately after looking at them & the call is noted on the MRI.

    So now we wait for the lab results. It makes me sick to know this infection is there, continuing to do damage, while we wait, but I guess there's not much choice. I hope you all are having as little of pain as possible & that you get some good sleep tonight. I will update when I get the lab results. Thanks, once again, for listening.

    Lauren
    8/28/14 Discectomy, Laminectomy, Foraminotomy L5-S1
    9/15/15 Surgical Debridement of infected surgical incision & drain seroma; wound vac applied
    10/21/14 L5-S1 Osteomyelitis & Discitis; 10/23/14 Bone & Tissue Biopsy = MRSE
  • I was hoping after not being on here for a couple of weeks that things would have settled down for you Lauren. I'm sorry to hear they haven't.

    Unfortunately sleep deprivations not going to help the situation, so I hope you get a reasonable nights sleep tonight. I've been thinking of you & your run of bad luck & I hope good luck starts flowing your way :)

    Veronica
    Microdiscectomy L5S1 January 2014
    Microdiscectomy L5S1 March 2014
    Fusion L5S1 11th August 2014
  • I am glad that the test is over and that you will finally have some answers and a direction to go in to get this resolved once and for all
    I am truly sorry for all that you have had to endure and hope that it is all resolved sooner, rather than later.
    Get some rest and take care of you.
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