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

13

Comments

  • 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: https://www.ninds.nih.gov/disorders/arachnoiditis/arachnoiditis.htm

    https://www.arachnoiditis.com/disease.asp
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  • 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,
    Shell
  • 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.

    Shell
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  • you might want to search a procedure called lysis epidural adhesion. https://www.emoryhealthcare.org/departments/spine/services/lysis.html
  • 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

    Shell
  • 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.

    Shell
  • 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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