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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,


  • You might ask if you have arachnoiditis or if it is scar tissue (epidural fibrosis).

    How far do you have to go to the doctor?
  • 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 :)
  • 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,
  • i hope you get the answers to all your questions about your scar tissue...take care...m
  • Just a little tip for driving. If you aren't already doing so, roll up a small towel and place it slightly under, but mostly along the side of your right thigh, on the car set. When you drive any distance, most people let the leg that is operating the accelerator pronate out to the side. It is OK for a few miles around town, but if you are going any distance, this will help hold you in the optimal position to keep your pelvis for rotating or tipping, is better for the discs, etc. The towel will hold your leg in a more straight-forward position.

    I am eager to hear what the new specialist has to say about scar tissue. Some surgeons seems to just be in denial about it being a/the cause of pain.

    xx Gwennie :H
  • 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.
  • 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,
  • 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,
  • 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.

  • 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.
  • I sure hope so. I can't understand why the OS said no more Fentanyl esp. since it was helping you. It makes no sense to stop taking a long acting medication and have you rely on BT meds. I don't know where that doctor's head is at. Anyway, I hope things go well at your psysiatrist appt.

    Do you know how scar tissue is differentiated from arachnoiditis? I also have been putting up with bladder incontinence ever since they found scar tissue, and I never had this problem before. Is the same thing happening to you? I plan on talking about it at my next appt to see whether it all is connected.
  • "Rehabilitation physicians are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move. Rehabilitation physicians have completed training in the medical specialty physical medicine and rehabilitation (PM&R)." (from the American Academy of Physical Medicine and Rehabilitation website).

    These physicians can do just about anything to get you back on your feet short of surgery. They always used to give the epidural injections, etc. prior to the rise of Pain Management doctors as a sub-specialty!!They have a better understanding of over-all body mechanics as opposed to the ortho or neurosurgeon who disregards the rest of your body and only thinks about the spine and the nerves feeding out of the spine. I went to see one for awhile prior to surgery and found her to be a nice compliment to my surgeon.

    Regarding the issue of scar tissue and arachnoiditis, in very simple terms, scar tissue could be considered the large, overall category and arach. is like a small, sub-category. Scar tissue is the body's way of healing an opening. If something is cut out of the body, scar tissue will form to fill in the opening. Even if you have a small cut on the surface of the skin, it will scab over and the tissue that forms to cover the hole is scar tissue. It can form anywhere on the body and usually does not cause problems.

    Arachnoiditis, on the other hand, is a very complex subject, one that many medical professionals do not adequately understand. It is an inflammation of the arachnoid lining, which is one of the three linings that surround the brain and spinal cord. When it develops, it can cause scarring and the nerve roots can become tangled and kind of grow together -- it is named after the classification for spider, "arachnid" because it forms little tentacle-like fingers that can wrap around the nerves and blood vessels. It is my understanding that it only forms in this particular membrane that is next to the dural sac in the spinal cord.

    Some of the symptoms include chronic pain in the lower back and/or lower limbs...tingling, numbness or weakness in the legs, sensations like water trickling down the leg, sever shooting pain which feels like an electric shock, muscle cramps, spasms, and sometimes, bladder, bowel and/or sexual dysfunction. The bladder problems are more common in women.

    Unfortunately arachnoiditis can be a result of some common diagnostic or therapeutic procedures such as having a myelogram or a laminectomy. There is concern in some circles that the dye used in myelograms and the preservatives found in epidural steroid injections MAY cause arachnoiditis -- especially if the medication accidentally enters the cerebral spinal fluid. BUT many spinal specialists do not believe this...or do not want to acknowledge the possibility that it could happen, I'm not sure which.

    There is no cure for arachnoiditis. Doctors treat for pain relief. Surgery is not recommended because it usually only results in even more scar tissue developing and it exposes the spinal cord to even more trauma.

    As you can see, the symptoms are almost identical. The spidery fingers of arachnoiditis will show up on a MRI or CT scan, and I guess that is the only way to tell if someone has this, or not.

    I have spent a lot of time doing research and reading up on this topic because it is something doctors never mention and I find it really scary. The worst form of arachnoiditis is called adhesive arachnoiditis.

    I hope it is OK to post these websites where you can learn more: http://www.ninds.nih.gov/disorders/arachnoiditis/arachnoiditis.htm

  • Meydey321- In the defense of stopping the Fentanyl, I ran out for a couple days 3 weeks after surgery, and when he asked me how I was doing I said I was OK with the vicodin every couple hours. He said it was better to stop and I never argued, I was feeling good, what was I thinking. By the time I went to see him again, I was off the vicodin, no pain meds after about the first month to the 3rd month (well one here and there). Then all this started a month after that, and since my care was transfered from the prescribing doctor to the OS he didnt want to start it again.

    I have dont have the bladder incontinence, but rather retention and issues with lack of feeling in that general area. A very simple explaination for me was that arachnoiditis is scar tissue pulling the nerves in the inside of the lining of the spinal cord where as epidural fibrosis is coming from the outside. Thats very general. I feel it is feasible to say that since I have mild arachnoiditis and minor scar tissue in the same areas, that could be why this is the way it is. I dont know, omg my brain is fried!

    Gwennie, Thank you for the great info. I have had many injections from the PM doctor in the past with no real relief, a few days if that, but who's to say a different person wouldnt have better luck, hitting the right spots. I am really up for anything,lol.

    I will be sure to update after my appointment.

    Take Care,
  • Thanks for that wonderful info
  • My OS supposedly arranged for me to see this physiatrist in his practice to start with some injections, I get there and see this guy and aparently, he hadnt spoken with my doctor, had no clue what I was talking about and said no he wouldnt do injections, but rather manage with meds, as we allready are. He said he doesnt see anything to be concerned about on the MRI since there is no obvious nerve compression. Also he said that I had good ROM considering I had fusion only 7 months ago and he saw no new herniations. OMG, we freakin know that. He walked out and brought me a sample coupon for Lyrica to replace the neurontin, which I told him my insurance wouldnt pay for, but he said those are my choices. When he was out of the room I took a glance at the summary from my visit 2 days earlier, it was open right on the counter. Under impressions the OS writes 1. Status post L5-S1 PLIF 2. Bilateral Lower Extremity Dysesthesia with isolated areas extending into the upper torso and arms. This physiatrist didnt check anything, no reflexes, no strength, no sensation, all of the things I am complaing about. He didnt want to know when it got worse, better or whatnot. He wants me to start water therapy again next week. I am having a really hard time not being negative at this point, sorry.

    Am I way off base here? Am I expecting to much from a doctor to give a full exam? I am really beyond upset, I went to the parking garage and called my PCP, who is on maternity leave, she called me right back and called for the neurologist to see me on Wednesday. I dont usually see doctors at the hospital I work at for obvious reasons (even though I have been off for almost 18 months I am still on staff) , but at this point I need someone thats going to listen.

    Oh well, home now, relaxing on my recliner. Hoping for a good weekend.

  • Thanks Nancy, that sounds like one of the procedures my PM doctor is talking about, to be done after injections, if they dont work.

    My problem with everything is that I am getting conflicting answers from each doctor. I started PT yesterday again and now I have lost reflexes in both ankles completely and decreased in knees. After surgery it was just the left that was decreased. The areas he hit with the hammer for reflexes were still throbbing/burning almost 2 hours later. I am set up to see a neurologist tomorrow.

    The OS and Physiatrist just want to push meds but cant tell me WHY. I have a big issue with covering things up with nerve meds and pain meds when you dont know exactly what you are covering. I guess I am stubborn,lol

  • Doesn't that drive you crazy? I went to a PM doc mainly for a new set of eyes, hoping maybe he could figure out why even though my fusion was a "success," I still had the same pain a year later. I could not make him understand that I was not there for drugs. I already knew there were drugs I could take that would disguise the pain. I was looking for answers.

    I think I finally got through to him, but his response was pretty much that there were procedures or drugs that would diminish the pain...it didn't really matter what was causing it.

    I have now had a second smaller surgery for the same pain, and just had a caudal steroid injection and still have the same pain. I just got a call from the PM's office wanting to schedule another caudal. At what point do you throw up your hands??

    Since the OS and physiatrist are in the same practice, have you thought about getting another opinion from a completely different practice?

    Do you live somewhat near a large university teaching hospital? Oh, I just went back and reread through your posts and I see the new NS was a professor -- so I guess you tried that. I also see no one explained the difference between a MP and a physiatrist. I explained the latter earlier. Many former anesthesiologists have now gone into pain management. The main difference between the two specialties is that the physiatrist is interested in other aspects of getting a patient back on her feet other than only dealing with pain. They also deal in body mechanics and movement -- in a way they are like a physical therapist with more training and the ability to prescribe and use drugs and medications. Many of them give the spinal and other technical injections, implant morphine pumps, neuro-stimulators, etc. Does that help?

  • Yeah, that helps Gweenie. I am sure I will have a red flag for all of the doctors I have seen recentely, but I am keeping my PCP aware and not taking prescriptions from them, only my OS as of surgery. My PM doctor, that I have seen for the last 6 years, wanted to do the injections (selective nerve block) when I called him 2 months ago. He is also an anesthesiologist as well. I am the hesitant one because I would like to have an idea why I have such widespread pain before I cover it up. I feel pain is there for a reason, it is telling you something! If the OS and NS say the scar tissue isnt the cause, the Physiatrist says the nerve isnt the cause, then WTF is it. I am being a broken record, I know, just so darn frustrating. Maybe this guy will have something insightfull to say tomorrow.

  • Sorry you didn't get the answers you needed. It seems that we're caught in the medical merry go round and can't get anywhere. Are you planning on going back to that psysiatrist? I do agree that the Lyrica would be better for you but unfortunately your insurance has thrown up a brick wall when it comes to that. The only way else to get it is for your surgeon to appeal to them directly and tell them that you have to have that specific medication.

    As for me, I'm am trying to figure out if I should go through with having a pump put in. I need to function better than I am right now. I do have the option of having a lysis of adhesions and am scare about them going in caudally. If an ESI brought me horrific pain, much worse would a caudal approach could be. Am I wrong about this? Who knows, but right know the thought of another spinal injection is enough to give me cold feet.

    Is the scar tissue causing you worse back pain like me? My doctor said that it is causing my back and nerve pain to be worse than before. Things are more difficult, and I understand what you're going through. Please let us know how you are; take care.
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