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Off to the NS for a second opinion for scar tissue.

Shell74Shell74 Posts: 300
I got a sooner appointment to review my recent MRI, so Wedneday evening I will be getting on the road for a Thursday appointment. We will discuss if the scar tissue I have anterior to the cord and surrounding the S1 could be causing my leg pain, numbness and tingling.

I know there are a few people here that have dealt with this or are currently are experiencing similiar. Suggestions or questions I should ask this doctor would be appreciated?

Thanks a bunch,
Shell
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134

Comments

  • Yes,I will make sure I bring that up. I called and ordered copies of my last 3 MRI's over the past 2 years, so he can compare the arachnoiditis factor.

    The office is about 3 1/2 hours or more with rush hour morning traffic. I have an early appointment so I will just go down the night before. I can stay at a relatives home which is pretty close thankfully.
  • Please let us know how your appointment goes this Thursday. I was shocked to hear how long the trip is out there and I hope you have a driver. Have a safe trip :)
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  • lol, nope no driver, I need to do it on my own, its a straight shot and there are many rest areas so I stop frequently. I can drive about 20 minutes at a time before I need to straighten up. Cruise control helps to. I used to have a minivan and a Escort ZX2, the minvan was to high and the escort was to low, a few years ago I bought a PT Cruiser, it is the perfect heigth for someone who cant bend to get in a small car or stretch to get into a minivan, the trunk space is waist level too, unfortuetely I was told they arent going to make them any more, aarrgghhh. My husband is happy because he hates the car.

    My Mom will drive into the city, thats were it takes over an hour to go 11 miles, it is horrible. Stop and go, people driving like maniacs, twists and turns, being cut off, thats not for me, I have a hard enough time concentrating on a straight road. The office is about 130 miles, its just traffic that makes it so long.

    I have been told that this gentleman is a very straight forward doctor that doesnt beat around the bush. That is really what I want, someone I can speak to in medical terms that isnt going ignore my questions. He is a bit younger and a professor at the Hospital.

    I will be sure to updat you all,
    Shell
  • i hope you get the answers to all your questions about your scar tissue...take care...m
  • I am over a month post op and the scar tissue issue scares me a little bit. When does this form and how long before it stops forming? I am doing excersises and stretching to help prevent it, but sometimes i dont always get around to doing it, but non-the-less i at least do it every other day.
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  • I am over a month post op and the scar tissue issue scares me a little bit. When does this form and how long before it stops forming? I am doing excersises and stretching to help prevent it, but sometimes i dont always get around to doing it, but non-the-less i at least do it every other day.
  • I am over a month post op and the scar tissue issue scares me a little bit. When does this form and how long before it stops forming? I am doing excersises and stretching to help prevent it, but sometimes i dont always get around to doing it, but non-the-less i at least do it every other day.
  • This new NS wasnt exactly what I exepected. My 11 year old daughter called him hyper. He only had me go up on my toes, and try to go on my heals (which doesnt work). He didnt examine anything else, no checking sensation, reflexes, muscle tone. I tried to describe how my legs (hip to toe) feel 24/7 and he said my description didnt make sense to him. He told me that tingling is not a nerve symptom that he understands, its either burning, aching or stabbing. He wanted to know nothing about what movements cause pain, what makes it better, what makes it worse. He took a minimal history and went out to look at my MRI. I looked at the clock, the total time including when he was out of the room was 8 minutes. He said that scar tissue doesnt cause pain like I am having. He also said that I do have arachnoiditits, however it has not gotten worse since the last surgery to obviously cause the increased new symptoms. He said I should also consider the possibility of Complex Regional Pain Syndrome, which of course I am in no way shape or form ready to think about.

    His suggestion is to get a CT scan and come back in 8 weeks to see how things are. I am very unhappy, he didnt even want to hear my questions. I am very frustrated to say the least.

    I have really lost my patience with all of this. I am ready to just go back onto strong long acting meds to feel a bit better and ignore all the pain and just do whatever I want. If I am going to have horrible pain it might as well be for a good reason.

    Take Care,
    Shell
  • Gwennie, I guess I am more dissapointed since I had such high hopes as you said. I got a little unrealistic,lol.

    I need to respect the fact that he says the scar tissue shouldnt be the cause of the new increased pain. Both my surgeon and him pretty much say the same about that.

    OK, then WTF could the problem be? He made it seem like it was my imagination. Then he wants to do the CT and see me again, then he made a comment that it was probably because I smoked in the past that my fusion isnt healing right, he even marked that on my receipt that I was a smoker and he urged me to quit. OK, while filling out my paperwork I was totally honest and said that in the past I have smoked (cigarettes), and I wrote "a few here and there", the last time I bought cigarettes was July! I guess he didnt beleive me.

    I very highly doubt I will go back,lol. I called today to go back in to see my PM doctor and not the PA. I really need to have a good talk with him before I decide to do anything I think.

    Gwennie, Thanks again!

    Take Care,
    Shell
  • I'm sorry too that the appt didn't go the way you thought it would but he did give you a diagnosis!! He said you have arachnoiditis!!

    Hopefully he documented it and it's your right to call and ask if he did if not to do so. That is very important. You might google arach and read about it if you haven't already. I don't care what either of those 2 idiots say. Arach forms in stages and I know he said it didn't look worse. Well that's where he could see but it could very well have gotten worse. If they are giving you the run around about "that shouldn't be causing pain" and blah blah blah then you deserve to be taken seriously. When this doc has documented the arach you can get a copy of the medical records and go from there.

    Arachnoiditis is pretty painful I have central epidural scar tissue & it mimics alot of the same symptoms the only difference is the scar tissue is in different layers around the cord but unfortunately quite the same. If you haven't read about it maybe check it out. I've been told in the past I might have complex regional pain symdrome too & I've read that is common for arach/EF people.

    I lieu of this diagnosis the PM might offer an intathecal pump or a spinal cord stimulator or whatever else will help the symptoms as there is no cure for either scarring wherever it is. They do some other treatments for scar tissue but I'm not familiar with it all. You are so lucky you can drive I can't sit to drive more than 10 minutes before I'd like to rip my leg off.

    I feel your frustration jump right out through the computer I totally feel the same way it's very frustrating. I don't think I'd go through the hassle of going back either, what a jerk!!! I hate it when docs blame smoking. I quit after my fusion so no one could use that as an excuse as to why I didn't fuse, I did and now smoke again. My nerves are torn out of the frame to try and quit again right now & my docs know they can talk til their blue in he face or save their breathe because this is me---- (|: (|:

    I hope you have a good day today & good luck >:D<
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