Announcement

Collapse
No announcement yet.

New C incomplete

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • New C incomplete

    Hey everybody,

    I'm a fairly new C incomplete. Having spinal cord injury came as a big surprise to me. Last year I woke up one day with having trouble walking and not feeling my hands out of nothing. I did sports almost the entire week and no problems so this came out of nowhere for me.

    I was diagnosed with cervical myelopathie and had surgery 5 months ago to make room in my neck. Because of the myelopathie I had spinal cord injury. This news was devasting and really hard to understand because I didn't notice a damn thing.

    Now 5 months after surgery I'm walking fine and having no bowel or bladder problems. I do have sexual problems which I've already posted a topic about so I'm not going into that over here. But that is one of my biggest concerns at the moment.

    I'm starting revalidation soon and they said they have good hopes for me. So I'm having lots of faith and confidence in my ability to picking up my life where I left of in a while.

    The biggest fear for me is the sexual problems and not being able to pick up sports in a way I did before.

    Also I'm very affraid and curious about what sensation I will get back and what not. Al the different stories by different docters doesn't make it easy for me as well since most of them have different theories and can't tell me more then short answers like "that's part of having a sci" just black and white answers I mean.

    When I finally managed to get some things clear in my head that the surgery went oke and room has been made and got myself ready in my mind for the wait and see what happens the year after surgery period I went to a normal docter with some problems and he asked me if I had my full spine scanned in the MRI and since this wasn't the case he immediately suggested I should go back to a neurologist and ask for a full spine MRI. These things get me so confused..

    Well maybe a bit of a back and forth story but thought I share to this forum since I've been reading with lots of interest the past few weeks.

  • #2
    Hi MrDutch, welcome to CareCure. As you know from reading the posts here, everyone's experience is a little bit different, but it sounds like you're doing very well overall and I hope you will continue to make gains. It's hard to say how much sensation you'll get back - it's a "tincture of time" situation, which is one of the most maddening things about SCI!
    MS with cervical and thoracic cord lesions

    Comment


    • #3
      I take it you are not primarily an English speaker. Where are you located?

      I'm starting revalidation soon and they said they have good hopes for me. So I'm having lots of faith and confidence in my ability to picking up my life where I left of in a while.
      I assume you mean "rehabilitation" instead of revalidation. Are you getting this in an inpatient program, or just some outpatient therapy?

      Did you receive any sexual counseling or education related to your injury?

      No one can say how much you may get back. It takes at least 2 years to know if you have maxed out in this area. Meanwhile, living healthy (good diet, exercise, etc.) are very important.

      There are still many sports in which you can participate. Check out our Recreation forum here. Let us know what your interests are. Swimming, for example, is excellent exercise for anyone with a SCI. Sailing, SCUBA diving, hand cycling, and court sports (hockey, tennis, basketball, rugby) are all adapted for participation by people with disabilities.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


      • #4
        I'm from the netherlands so that's why I'm not very good in the English language. But I guess it means rehabilitation indeed. It's a clinic outside of the hospital.

        I haven't received anything after surgery 5 months ago. I had surgery, got out 3 days later and nothing else except for a new MRI scan because of complaints and another one this week.

        I know there are a lot of sports for people with disabilities, have to figure that out where I belong since I can walk fine and can even run (for a short period at the moment).

        But I'm hoping there will be people at rehabilitation who can tell me more about some of my limitations.

        Comment


        • #5
          your limitations are yours alone, we truly are all different in our injuries, but it sounds like yours are very minimal, I'm one year out and still gaining sexual response, use viagra to help you along with it.
          Last edited by trekker6; 01-10-2012, 11:28 AM. Reason: correcting grammar
          "Would you rather reduce deficits and interest rates by raising revenue from those who are not now paying their fair share, or would you rather accept larger budget deficits, higher interest rates, and higher unemployment? And I think I know your answer." Ronald Reagan"

          Comment


          • #6
            Allright I just had a new MRI scan 3 months after te previous one. 5 months post operation. My surgeon called the damage (white area) on my spinal cord has increased. Altough they have made room in my neck. He doesn't know how this could happen and now I have to wait for another MRI with contrast liquid and he's going to ask another surgeon from a different hospital after that.

            Kind of devastated right now :S

            Comment


            • #7
              It's really tough when you must wait to have tests, and then wait some more for results, and then go through that whole process again. This is pretty much the norm with SCI, I'm sorry to say. But the good news is that your doctor seems to be thorough and open to asking for other medical opinions. SCI is an emotional roller coaster, that much is certain.
              MS with cervical and thoracic cord lesions

              Comment


              • #8
                I know it's good news that my docter is looking for more options. But it's hard to hear from your surgeon that he doesn't know either because they have made room in my neck to prevent further damage. Now it's just a guess about why the damage is increasing.

                Comment


                • #9
                  its better that he says he does not know than for him to give you a incorrect diagnoses.
                  or worse, live with it I can't help you. it seems like you have a decent Dr.
                  You must be pretty scared, and that is understandable. anyone would be, but don't let the fear and uncertainty defeat you. every day in every life has the same uncertainty, we just don't become aware of that until something like this happens to us.
                  I pray that you find out soon what is going on.

                  welcome to care cure by the way.

                  Comment


                  • #10
                    Facing barriers is something everyone hates, not just people with spinal cord injuries. By the sound of your recovery, you'll be doing a lot physically in your future. 5 months is early.. it takes a long time to adjust, mentally and physically. You still have recovery ahead of you, but you will eventually have to come to deal with whatever residual physical problems you have.

                    I suffered a C5 incomplete injury snowboarding when I was 13. I went from playing hockey, football, paintball, biking...snowboarding.... to lying motionless on a ski hill within a second. With rehab I regained some walking ability for short distances, and can use my hands relatively functionally.. but I had to adapt.. but I'm still able to 'do' a few things I did before. I play paintball with friends at a field we built, and instead of playing guitar, which requires stellar manual dexterity, I learnt how to DJ. I even play in clubs around the area now.. DJ'ing is a passion for me now, more than guitar ever was.

                    What I'm saying is.. regardless of what happens, you have a rich life ahead of you. Don't think about what you can't do, start thinking about what you CAN do. Eventually you may find some things you once did aren't as important anymore, because what you are doing is.

                    Comment


                    • #11
                      Thanks for your answers! I will see what happens and start moving on from there.

                      Rehabilition might get postponed because the damage is stil increasing. But will talk about that with my surgeon next week.

                      I talked to a neurologist and my surgeon today and they will discus my case which is really good to hear that I'm getting a lot of attention from specialists. But they both agree and have the following conclusion.

                      - The damage increased. And that this is really weird and not what they expected
                      - They believe according to the latest MRI that there is enough room in my neck around the spinal cord
                      - They think that the increase of the damage is still going on because of the past compression altough the compression is gone. And that it might stop anytime.
                      - They are 90% sure that they can't fix anything more with surgery
                      - The 10% what they want to shut out is that there is something else going like a tumor or MS. But they both also agree that that is most likely not the case.

                      Comment


                      • #12
                        Originally posted by nick947 View Post

                        What I'm saying is.. regardless of what happens, you have a rich life ahead of you. Don't think about what you can't do, start thinking about what you CAN do. Eventually you may find some things you once did aren't as important anymore, because what you are doing is.
                        wise words

                        Comment


                        • #13
                          A small update...

                          I've had 2 tests done today:

                          - They checked if my spine was stable with x-ray photo's.
                          - I've had another MRI with contrast liquid(?).

                          My surgeon called and said that there is nothing wrong with the stability of my spine. What concerns him is that there seems to be an infection in the area that has been decompressed and that is causing damage to the spinal cord.

                          He asked the radiologist to also look at the MRI and they both don't think it is MS or a tumor but they are looking for answers and a solution.

                          Does anybody have / had a similiar situation with an infection? And how they made the infection go away? Just a long shot, I know you are no surgeons

                          Comment


                          • #14
                            Do you mean that this infection (probably an abscess) is compressing your cord? Decompressed means that the abscess has been drained or removed, so unless you had surgery to do this, that is unlikely.

                            Spinal cord abscesses can indeed cause spinal cord damage. The abscess is usually outside the cord itself, usually within the meninges but the bulk of the abscess pocket can compress and ultimately damage the cord.

                            Have you had a recent infection or traumatic injury? Are you diabetic? An IV drug abuser? Those are the most common origins of a spinal cord abscess. If you have one, and it is still compressing your cord, it should be surgically drained immediately. The longer the compression lasts, the less likely that you will get return once it is decompressed. This is usually an emergency surgery.

                            (KLD)
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                            • #15
                              No at least that's not what I got out of the phone call. Maybe I'm explaining myself a bit wrong because English is not my first language.

                              I've had surgery 5 months ago on my c4-c5-c6 section because of stenosis & mylopathy. They decompressed the spinal cord. And on the MRI 3 months ago it showed there is enough room but that I do have spinal cord injury due to the stenosis.

                              Last week I've had a check up MRI because of complaints and it showed an increase in spinal cord damage in the area where the decompression has been done. But they couldn't figure out what may cause it. But my surgeon thought it still might have to do with the decompression and how my body reacts.

                              So today I've had another MRI with the contrast liquid and my surgeon called and told me that he can see there is some sort of infection (I don't know how or what he has seen in the MRI with the contrast liquid).

                              I guess an abscess should be noticed on the MRI scan right?

                              I've had no recent infection that I know of. No trauma. No diabetic. No IV drug abuser. Don't have any meds at all. I have no high temperature as well.
                              Last edited by MrDutch; 01-20-2012, 03:11 PM.

                              Comment

                              Working...
                              X