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Need advice

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:31 AM in Chronic Pain
I'm not really sure where to start here. I'm a 34 year old female with a long history of back problems. When I was in the 7th grade I fell down a flight of stairs on my butt and had to have xrays to be sure I didn't break something. Instead we found that I have a form of Spina Bifida. From that point onwards I have had problems with my back going out on me. There have been numerous times when it hurt so bad that I couldn't walk. Sharp pains would shoot down my legs and they would go limp on me. I ended up walking with a cane or even a walker. About 2 years ago, my back when out again. I went to the doctor and had some tests done and they found a Tarlov cyst in the area where my vertebrae is open (the spina bifida olcutta area). The cyst is approximately 2 cm x 4 cm in size. After steriods and some muscle relaxers my back and leg usually go back to normal until I do something to it again. On Thursday (9 days ago), I had been noticing that my neck had been hurting for quite a while and then a pain kept shooting down my arm. Also, my right thigh was aching just slightly. I went to the doctor and they gave me two shots and some Indomethicin and KFlex. My instructions were to return in a few days if it wasn't better. On Saturday morning, I woke up and could not move my leg. My shoulder and arm were better but the leg spasmed constantly from the top of my thigh all the way to my ankle. I have felt a lot of pain over the years but this was the most horrible pain I can imagine. It would spasm for 10 to 15 minutes and relax for a few then do it all over again. I have been forced to walk with a cane since then. My knee buckles and I have fallen 4 times since that Saturday morning. I ended up back at the doctor and they gave me two more shots, some pain meds, and told me to continue taking the other medicine. I was instructed to go and see a neurologist. I was finally able to see a neurologist on Wed afternoon. By this time the area from my knee to my ankle has gone numb. It spasms when I walk but if I stay off of it I can manage the pain without meds. I was scheduled for an MRI before the nuerologist would do anything. Thursday I went for an MRI and panicked because it was closed and I am a fluffy girl with massive issues with tight places. So, we scheduled another "open" MRI for Friday. Just because the sides are open doesn't mean it isn't 3 inches from your face. Another panic attack so no MRI was done. By this time I was in so much pain I was in tears. I called the neurologist and they were closed so I spoke to the after hours people and they basically said I was out of luck until Monday. So I went back to the clinic and explained my progress and I think through the tears and facial tightness showing massive pain they understood that something had to be done. So, I was advised to go to the emergency room. They did give me a Toradol shot before I left to relieve some of the pain. I arrive at the emergency room and go through the events of the past week. The doctor tells me that without an MRI they can't do anything. I asked for drugs to relax me and I was told that they usually didn't do MRIs in the emergency room those should come from a doctor. AT this point I was not only in pain, I was pissed too. So as I sat there in tears trying to figure out what I was going to do my friend (who is rather mousy) went to the doctor and told him that he could do it he just didn't want to do it. She suggested that he reevaluate me and see what he thought without making a judgment before he even touched me. So, in he comes and starts testing my reflexes. My right leg had no reflexes at all. I could feel him hitting me but it wouldn't react. So, I think at this point he decided something wasn't right and scheduled a sonor on my leg and the MRI with sedation. So, here I am today. I made it through the closed MRI and he discovered a disc issue in the L3 and L4. This is causing the issues with my leg. Now, keep in mind, my back hasn't hurt a bit throughout this whole ordeal. I was given some steriods and a pain killers and I was advised that I should follow up with a neurosurgeon on Monday.
I'm sorry this was so long but I'm a newbie and I want to give as much info as possible. Oh, one other thing. I have had pretty much continual pain in my left side for about 4 years. I've mentioned it to other doctors but no one seem to notice. My reason for posting this is because I need help. The doctor that I was referred to has a rather not so good of a rep and I'm kind of wanting someone that has a good rep. My sister-in-law works for a Pain Management doctor and he has offered to treat me with a spinal block instead of surgery. I need opinions on what I should do. If anyone has had similar situations, I welcome your opinions. Thank you!


  • i am getting an mri with sedation....do they have you lie on the mri table while they sedate you?
  • and see a neurosurgeon with a copy of the MRI that was done and the report from it. If you are not happy with the one that you are currently seeing, then contact your insurance company and see what others they have in their authorized providers listings. You can also call the hospital and ask for a recommendation from the nursing staff.
    Do a search on the internet for one as well. You may be able to locate a reputable surgeon in your area that way as well.
    Good luck to you,
  • You've come to a great site for support and sharing. You certainly have been through a rough time with your pain. Good to hear you had a friend with you to help you communicate with the doctor. Its so important to be assertive about your care. I wish you the best on your visit to the NS. Keep us posted on your progress.

    Best to you,

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