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



  • Oh Shell ~ I am sorry this doctor was a disappointment. I know how much you were looking forward to seeing him, with high hopes that he would be able to find your cause of pain. He was a neurosurgeon and not a neurologist, right?

    I have often thought about how quickly these surgeons make a decision on what becomes a life-changing event for us. I went to 8 different spinal specialists before I had my lumbar fusion, and I bet combined they spent a total of 15 minutes looking at my MRIs and considering my "options." Maybe if you're that experienced it only takes a minute to view the film and instantly see what's wrong...but I would like them to be a little more thorough.

    Are you planning to go back to see him? The following is a link to a doctor that was a pioneer in the early days of spinal surgery. He has some good information about arachnoiditis. www.burtonreport.com. specifically for the arachnoiditis it is: http://www.burtonreport.com/infspine/arachclassification.htm

    Don't give up. There has to be someone out there who can help you.

    xx Gwennie
  • 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,
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  • 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<
  • Hi,

    I am 3 years and 5 months post op for a L5/S1 disc herniation. Severe damage to the nerve.

    Over the last year and a half my scar tissue has gotten worse. I do stretches often and have since the op.

    I am not sure when it stops forming but I don't think mine has. I hope your outcome is better then mine xx
  • I also had a bad experience with the doctor. I explained my situation to my P.T., who told me that doctors often say it's in your head when they don't want to deal with you anymore. Either they can't do anymore for you or they are afraid to anything else. Either way, they need to be a little more considerate of the patient's feelings. There are so many back sufferers with this same issue it seems. Doctors dismiss them without spending adequate time with them and then the patient doesn't know where to turn. For me, I got a second opinion from a spine specialist. He spent 1/2 hour with me the first and second visit. He is the best doctor, and his P.A. is the best P.A. I have ever met. The time they spent explaining and questioning and examining me was awesome. I told the secretary at the front desk to please let the doctor know how much patients appreciate this. She said, "That's one thing these doctors don't skimp on - their time with each patient." My suggestion - don't give up just because one doctor doesn't care about his patients. Keep going... If I can find a patient, understanding doctor, you can too. It just may mean a 2nd and 3rd opinion. Believe me, it's worth it though.

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  • The first doctor that said I had archnoiditis did NOT document it, so when I went back to the PM doctor he didnt see it anywhere on the report. This doctor even showed me the areas on the MRI and asked about a history of menagitis. I am convinced you should record each visit and have it transcribed for your records, send the doctor a copy too,lol. This last NS didnt mention it to me either and then I asked him about it he said "well yes you do have archnoiditis, I see that, but it doesnt appear to be severe that it should be causing you this pain", he didnt feel it was worth mentioning. Yet in another breath he says a pain for one person is not the same for another person. Some people can have a horrible herniation with no pain, while others have a slight bulge with major pain. OMG, Dahhhh!

    They are really convincing me its all in my head. It is so upsetting, I want to go back to work so bad. I have let myself get very depressed and irritable, my poor family is paying the price. 10 years of this is wearing me down.

    I will see my OS tomorrow and I really feel like telling him were to shove it, but I wont do it. I do want to know honestly from him, if he feels he cant help anymore and what I should do now. I deserve some sort of realistic plan (not a dx or fix it)! I need to get my thoughts together and be proactive, this is so hard when you are emotional. I also have an appointment with the PM doc the first week in April. My PM doctor had released me to the OS when I had surgery, so once the OS said no more Duragesic after surgery, I was done with long actings (of course at that point I was doing great). So right now I have no meds, besides the neurontin and vicodin (which I dont take because it doesnt work unless I use it 3-4 times per day).

    OK enough of the pitty me crap. I have tried to stay off the computer becasue I cant help but complain,lol.

    Thank you again Pettynme!
  • I do have an appointment Wednesday with the OS(all week I thought it was tomorrow but just checked and I was wrong,lol) and then with the PM the following week. Who knows, maybe they will get it together and make a plan. My PCP is out on maternity leave till the second week in April, I think at that point we will need to come up with a new plan, rethink what direction I need to go. How about a body transplant,lol. I trust her very much.

  • I saw my OS this morning and he now agrees that something is not right with the skin burning and throbbing sensations in my legs. I am thrilled with the decrease in back pain! Although he still stands by the fact that he doesnt feel the nerve pain is caused from the scar tissue. He said he will not say that nerve problems are from the surgery site till at least 1 year after surgery (since there is no compression according to the MRI its all inflammation he says). He wants to see me in 5 weeks but has set me up to see a physiatrist on Friday, then a neurologist next week. I guess it sounds reasonible at this point. I didnt get the impression that I was being pawned off. He wants me to take off the rest of the school year if I can too.

    Can anyone tell me the difference between a physiatrist and a PM doctor? I am scheduled to see my old PM doctor next month.

    So I guess its not any real news but it was better than being told to sit around and doing nothing.

    Thanks all,
  • I've read everything so far and I can understand how frustrated you are. Different opinions are such a headache and you don't know what to believe. Anyway, a psyiatrist is essentially a doctor who specializes in rehabilitation by means of medications (usually non narcotic), PT, spinal injections, and also refers patients to a psychiatrist for help with depression. This doctor was the first specialist I saw for my back when I herniated my lumbar discs. After determining that conservative measures wouldn't help me, he referred me to a surgeon.

    I also have the same problem as you with scar tissue. My last ESI to help with this pain didn't work, and my doctor said I could have a morphine pump put in. This has been discussed prior to finding the fibrosis on the MRI, and now the case is stronger for me to have one. The doctor also talked about performing a lysis of adhesion and I'll know more about it when I go back for a follow up appt.

    Don't worry Shell, it seems like things are moving along so you can get the treatment you need. Please keep us updated on how you're doing. Take care
  • Sounds like I have come full circle only to start over again, lol. The last 8 years Fentanyl was the only thing that helped, I was able to have pretty good relief on a low dose, that was what I was going to ask the PM doctor for. Maybe this person will have a better suggestion.
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