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Thread: Please Help Me!

  1. #1

    Unhappy Please Help Me!

    I had a microdiscetomy Aug 2006, the day after I woke up with a baseball size lump at the surgery site, Doctor said it was normal, upon my 2 week check up Doctor aspirated this thing and said out loud, I wonder if I should go back in to remove pressure, but he did not and he kept aspirating this and called it a spinal fluid lead, dural tear.

    Three months later he did a blood patch, when I woke up from this, the pain was off the charts, my legs were moving on there own and I was loosing feeling in my legs and bladder. Doctor was not concerned, but the Nurse advised me to go to another hospital right away and so we did. I saw Neurologist there and he was asking why the Doctor that treated me was not treating now, I tried to tell him what had happened, and he advised me to see one of the outpatient neuro's in an appt. that was 2 weeks from the E.R. visit. I suffered while waiting for appt, my pain was a burning pain in legs and no matter how I sit or lay I could not get away from it, in addition to the burning pain, stabbing nerve pain down both legs, with vibration type pain, I begged for death, the pain was that bad. I also could not feel my bladder very well.

    When I went to my appt. they just sent me to pain management, did not tell me what was going on. I went to the E.R. 5 times begging for help but got none. The pain management Doctor thought I might have Arachnoiditis, but then decided I did not. I was at this point feeling a little better and was 8 months post op. I started taking morphine and other pain meds just to relieve the pain, but was getting by.

    Nov, 2007 we were out of town, I started loosing feeling in legs, with severe pain all over again, but this time I could not urinate, they put me in the hospital for two weeks and the urologist said my bladder was dead, I also had no upper or lower reflex's, but no one mention what this was, they sent me home with a hospital bed, wheelchair, walker and etc.

    I continued to get better for a bit only to get worse again, my husband learned to cath me and bath me when I could not. Still no diagnosis!

    On June 10th 2009, I started this pain, pressure, lost of legs, bladder problems all over again, I went to my family Doctor he said I need to see a Neuro, I advised him that I am scared because I cannot even feel ice on my legs, but my pain is off the chart's, I have an appt. this Wed with a new Neuro Surgeon. I called his nurse today to advise her that my stomach is hurting severely and now my Bowel's have started leaking, she has not returned my call yet.

    Will someone or anyone please tell me how to deal with this and how to get a diagnosis, I have heard, nerve damage, arachnoiditis, spinal abcess which is what caused this problem and it showed up on my MRI, they have tested me for MS and the last I heard was possible post op spinal injury.

    Alabama has a 2 year medical malpractice law, which has now expired, but it can be extended to 4 years if i was not aware of the diagnosis, which to date I have not got one. Oh I have been call a walking paraplegic whatever that means!

    I am having tremendous pressure in my saddle area, loss of feeling, stomach cramps with gas, bowel leakage, loss of bladder, I can walk sometimes and sometimes not. I am worried that something else is going on back there.

    If any of you can tell me what you think, and how to get a diagnosis, and how to learn to use a wheelchair please let me know, my husband and I are so upset right now. Nobody wants to treat me!

    Anyway I am glad I found you!

  2. #2
    It is unlikely at this point that anything can be done to correct the damage already done. I hope you have seen an attorney already but of course that won't get you back what you have lost. It is unfortunate that the first physician took so long to do anything at all if what you say is true.

    If you have permanent impairment at this point you need to learn how to live in spite of that, and to have as much function as possible in spite of it. This will probably mean getting into an outpatient SCI rehabilitation program.

    I would suggest the one associated with the Spain Rehabilitation Center, which is part of the University of AL in Birmingham. You don't mention what your insurance is, so that is probably the most accessible program to you. If you have good private insurance, you might also look into the day treatment program at Shepherd Center in Atlanta. You should see a physiatrist who specializes in spinal cord injury rehabilitation, and work with the team they will assemble for you (PTs, OTs, rehab nurses, psychologists, social workers, etc. etc.).

    (KLD)

  3. #3
    Thanks for posting, yes it is true, it has been a nightmare, i get better sometimes and then bad again, I don't understand what is happening, and I am so mad at those Doctor's that I hate them, they have ruined my life! They just kept me going in circle's. Do any of you think that I should go to the E.R tonight with my loss of bowel today, and lost of feeling in my legs again. My husband wants me to go, but I just don't know anymore.

  4. #4
    River, I'm so sorry you've gone through this nightmare.

    As far as going to the ER tonight re: your bowels, I wouldn't bother. The docs in the ER are generalists who have limited experience with the issues of spinal cord injury/damage (at best). All they would probably end up doing is treating you as though you have diarrhea and telling you to see a neurologist or neurosurgeon. Since you already have an appointment for Wednesday, save yourself the grief and try to get a good night's sleep instead.

    I'm hopeful that the new NS you're seeing this week will be the one to give you the answers you deserve. A tip? Write out all of your questions in advance. Make two copies. At your appointment, give one to your doctor and tell him/her that you're not leaving until you and he have discussed every item on your list. Have your SO in there with you to back you up. A good NS will take the time to address your needs and concerns.

    And I second KLD's thought that if you haven't already seen a lawyer about this, you need to get to one right away.

    Best of luck this week -- please let us know how it goes with the new doc.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  5. #5

    Question

    You gave me some good advice about the E.R., I decided to try and wait until Wed. This condition is crazy, I just would like to know why this happened, and if this is a SCI? It sounds stupid, but until I started reading this forum, I believed that I would get over this, that is what's so frustrating, it is like living a SCI over and over again.

    I know that you all have the same stories, but I must say this pain makes me beg for death, and I hope that no one here goes through this type of pain.

    I wrote in because I am scared, I have had trouble breathing for the last few days, it feels like something is squeezing my spinal cord. My husband has been wonderful, but this is really taking a toll on him. I cannot even sleep in bed with him, and have not been able to since the surgery. I moan and cry all night. I am on high dose's of extended relief morphine, loratab, instant relief morphine, soma, xanax and flomax but nothing seems to help.

    I have blamed God for quite a while, but I have made peace with him, but I can't get past the mental trauma.

    Thanks for posting.

  6. #6
    Oh, sweetie, I understand. I went through two years of misdiagnosis before doctors finally diagnosed what was causing my problems -- including the complete loss of the use of both my hands for several months -- as a malignant spinal cord tumor. The not knowing, the symptoms that come and go without reason, the pain -- they're all maddening and scary as hell. You reach a point when you're desperate for a name to put on it, even if it's bad news, because once you can name it, you can begin to figure out what to do about it.

    I'm not a medical professional, but here's my take on things.

    Everything you've described points to some level of spinal cord damage resulting from the surgery you had in 2006. The damage is probably not reversible at this point, but, depending on the precise cause, there may be something that can be done to keep it from progressing. That's where the neurosurgeon comes in.

    The pains you're experiencing are all forms of nerve pain, also known as neuropathy or central pain. I'm sorry to tell you that it's probably the most difficult form of pain to treat. The opioids you're taking are generally ineffective on this type of pain. Here's what KLD had to say in the Pain Forum about managing this kind of pain :

    Quote Originally Posted by KLD/SCI-Nurse
    For medications, they are primarily the tricyclic antidepressants (imipramine, for example), anti-seizure drugs (gabapentin, Lyrica, Tegretol), and sometimes other medications such as mexilitine. It is common to have to use a combination and to make a lof of trial and error evaluations with different meds. You have to use medications with an understanding of the high rate of side effects with these drugs.

    While medications can be used, it is also important to try non-medication type interventions as well. TENS is especially important to try as it helps many. Acupuncture has also helped some. Self-hypnosis and relaxation training is also something that should be explored.
    Have the neurosurgeon refer you to a pain management specialist who's familiar with spinal cord damage. That will be your best bet for getting started on finding what works best for you.

    As far as learning to use a wheelchair and living with your new disabilities, a physiatrist (a doctor specializing in physical medicine and rehabilitation) familiar with spinal cord injury/damage (SCI/D) is the way to go. He/she can put together a team of physical and occupational therapists, counselors, etc. who can evaluate your needs and get you set up with the right type of assistive equipment (starting with the best type of wheelchair and cushion for you), help you learn how to manage your bowels and bladder, and be as independent as possible. As KLD suggested, the best way to get all of this taken care of is through an outpatient rehab program, a sort of one stop shop for all of the specialties.

    You and your hubby may also find it helpful to get involved with a spinal cord injury/damage support group in your area.

    Here's instructions on how to search for a specialist in spinal cord injury medicine in your area.

    I know this is an overwhelming amount on info to process on top of what you're already dealing with, but this is the very best advice I can offer to help you find the answers you seek. You've already taken one of the best first steps you can to empower yourself by coming to this site -- there is a wealth of caring, knowledgeable people in this community who understand what you're going through and are so giving of their support and advice.

    In addition to these doctors, I really do hope you'll see an attorney and consider pursuing legal action against the doctor who performed the original disc surgery. Not only would a monetary damages from a civil suit help you with the costs of living with SCI/D, speaking up with legal action may help keep this from happening to someone else.

    Hope this helps you figure out where to seek the specific kinds of hel you need, river. I'm pulling for you and your husband both.

    --THC
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  7. #7
    From someone who was misdiagnosed as well...I am so sorry to hear what has happened to you. What is it with Doctors..do they really think we want to be in A and E in hospitals waiting around for hours...that we are there pretending something is wrong with us, with tears rolling down our faces and screaming with pain..and still they do not listen.
    My only advice is do not leave until somes LISTENS to you.

  8. #8
    I am so sorry you are dealing with this.

    I would try to get to a facility that specializes in spinal cord injuries -- don't know where you are at now, but there are several and people here can advise as to one near you. KLD had some good suggestions. It's so important to get an accurate diagnosis and be seen by people who know about spinal cord injuries.

    Secondly, get a good lawyer now! There are ways around the statute of limitations. You must contact one right away.

    Good luck.
    Ugh, I've been kissed by a dog!
    Get some hot water, get some iodine ...
    -- Lucy VanPelt

  9. #9
    Thanks for all the post, I am currently in South Dakota, I called the Doctor here and got nowhere, called the neurosurgeon and my appt. is Friday June 19th, I expressed to his nurse my concerns but she was very rude. I called the mayo clinic in Rochester and talked with a very nice lady and told her that I was having all these problems, she told me to come to the Mayo E.R. and bring my MRI with me.

    My husband is changing the oil in our truck and is making a bed in the backseat so that I can lay down on the way to Mayo. I will be leaving tomorrow or the next day!

    I am leaking bowel material, having severe pressure at the surgery site, numbness that feels like pressure in my legs and cannot feel ice on legs or butt, not to mention this pain, I have been crying in agony for 2 weeks straight.

    We call an attorney today and was told that if I can get a diagnosis he may take it.

    I just looked at my medical records and 1 1/2 years after the surgery the mri still show what they call as bone marrow edema and a lesion at the infection site of abscess, I never even knew it said that until today. I have tried to look online to see what that means but I really do not understand it.

    Some of these Doctor's should have to go through 1/4 of the pain we all share and see how they beg for help.

    Your post have brighten up my day and I feel like I found people who know what I am going through, I am just sorry we met like this.

    I had been doing a little better and thought I was on the road to recovery until all this happened again about 10 days ago, and have been in dyer straights since then.

    Any further advice on how to get a diagnosis would be appreciated. Thanks! Please Pray for me for I am very scared right now, I can't even admit to myself of my fear.

  10. #10
    It is very sad to hear about your story and I hope you will get better. We will pray for you and good luck on the trip to Mayo clinic.

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