... injury.I was totally paralyzed from the neck down. Thank God & rehab I was finally able to walk again. Just not as well as before.The past yr I have had the muscles in my leg tighten, they don't release at all now. Extremely painful.My toes stay curled, I am now pretty much stuck laying down. I just keep getting worse every day. I am seeing a physiatrist @ J Hopkins. They just inserted the baclofen pump. That night I went into "back labor", excrutiating pain. Well it's not much better. The pain is not as intense but it is there all the time now.They believe the tubing is hitting the "lining of my stomach". They are waiting to see if it will subside. I can barely walk at all. I have lost all the independence that I had worked so hard for.I am in constant pain, can't do anything!It has been 6 wks since the surgery.I can barely walk. Am in a wheelchair when I go to the hosp once a week for the pump dosage to be increased.I swore I would never be in one of those again. I am looking for help.There has to be somewhere/someone to talk to.I take 100 mg orally & 825 mcg through the pump.Someone please help me. I was so active and fun before. Nothing what I was now. Please help!!!
Hi and welcome to this site mckcer!!
It sounds as if you are lucky to be alive. And I am so very sorry about your situation!!
I was going to suggest Baclofen, but you've covered that and tis not doing anything for you is it? Perhaps your doc could help you with another muscle relaxer? Or have they tried them all?
Are you on any other meds besides Baclofen? Any pain meds? DO you have chronic pain? Am I asking too many questions and what is your favourite colour? (just kidding, lol)
If you are in chronic pain, you've come to the right place, oh hells bells, even if you are not in chronic pain, you've STILL come to the right place!!
So, you are stuck in the chair as of now? Can you walk at all right now?
I'm sorry, tis too early for me, just reread your Q, and yes you ARE in chronic pain!! Why in the name of Zeus don't your docs have you on some type of pain medication? (uh oh, asking yet more questions!!! )
I would think through pain meds and more physical therapy that you would be independant again! But I don't know much about your condition, so, sorry about that part.
I wanted to be the first to welcome to you!! This site is filled with very caring, compassionate, non-judgemental people, who like you (and me) are seeking answers and seeking to help others as well.
Hang in there mckcer, help is on the way!! Sorry I couldn't have been more help to ye!! But do stay with us please? You will make great friends on this site!!!
God bless and keep your chin up!!
Hi, & Welcome to the site, What you need first & foremost is a good lawyer, accidents happen. but there is not excuse for this.Of course you would have to have treatment from a different doctor if you aren't already.I am so sorry this has happened to you I dionot know what to suggest except maybe a spinal chord stimulatlor. You might mention this to your doctors. They do a trail of 2 days with temporarey needles placed in the spine, & if it helps in those 2 days, then they do an implant of a permanent one. Not a big deal . There is a DVD & small book out about it, & all Neurosurgeons should have a copy or pain doctors I wish you all the best, & this site is a great place for support. Good luck girl you have all my support... .
Hi Mcker... hi, it's ... welcome to the site. My first suggestion/question is..have they tried any implantable devices in or around your spine to help with function or pain? Also, has there been any talk of stem cell therapy?
These are two things that u have not mentioned that I think might be able to help with the limited knowledge that I know of your situation.
Please hang in there. You were upright once... you can do it again!!!
I know your spinal cord was "hit" as you describe but it wasn't severed. There most likely will not be permanent damage... no?? Most likely u r on steroids to decrease inflammation around the nerves. If not I might suggest a run of steroids. What pain meds are u on... u just gave mg amts. I don't know what kind of insurance you have but if I were u I would try to get myself admitted to the best rehab place in the country like the one in Houston where they took Gabriel Giffords... can't remember the name but would be easy to look up. You are lucky that the cord was not severed..I would thing an implantable nerve type device could really be effective.
Please give us a little more info on what was tried and what is being done with you.
I will keep you in my prayers with hope that your condition will soon improve to where you can walk upright again... hang in there my girl...
I am so sorry you are having to go through all of this - you poor thing! I haven't experienced anything near as severe as you have but I did have a spinal fluid leak after a procedure last year and the dura was traumatized. Severe pain and muscle spasms were the result. Years ago I had terrible migraines and went to a massage therapist for cranial-sacral work. When this spinal fluid leak happened I went to a chiropractor who did cranial-sacral work. In just 4 sessions most of the pain and trauma were gone. This therapy is similar to a massage but not too much hands-on. The therapist quietly matches the rythm of her hands to the rythymn of your body. It is very quiet, very calming and has a little massage in it. You need to be very quiet and still, do deep breathing and relax as much as possible. I guess you would start by calling chiropractors in your area and ask if they, or any other practitioners they know, do cranial sacral work. I sincerely hope that you will get relief soon!
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