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Fibrin Sealant Treatment

Just thought I'd let you guys know that my son had the Fibrin Sealant procedure done in Tyler, TX on Wednesday. I will post periodically so that anyone interested can follow his progress (hopefully progress). He's still in the early stages of recovery and it was a bigger deal than we had anticipated. For instance, he can't drive for a month - just what a 19-year-old boy wants to hear! Lol. The doc says it will take about 2 - 3 weeks before he starts feeling better. Then he has to be REALLY careful about what he does for the next 6 months. The healing won't be complete for about a year, but after that his discs should be completely back to normal. I'll be happy to answer anyone's questions the best I can. Things are pretty hectic in my life right now, so it might take a couple of days to reply to questions or comments, but I thought some of you might be interested in this procedure and how it goes. Good luck to you all and happiest of holidays!
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Comments

  • Hi anelsen :) No new news so far. He's still in pain, but says it feels different. The doc said it would take a while for all his muscles and ligaments to adjust to the new alignment of the spine and that his would cause "discomfort". I love how docs always describe pain as discomfort - lol. Perhaps the "different" pain is part of this adjustment??? Who knows. The spine is such a mystery! Anyway, I'll post as things progress - thinking positive!!!
  • He's still in pain, but able to move around a lot more now. Able to sleep without pain meds. Was cleared to drive on Wednesday. It's amazing how much happier a teenage boy is with car keys in his hand! He says the pain now very "different", but can't really describe it except to say it feels like pressure on the discs that is causing pain. The same pain he's had for the past 4 years is completely gone. So...we're just waiting to see if this new pain goes away, hopefully leaving no pain at all??? It's been 4 1/2 weeks - I'm getting pretty anxious & hoping this is going to work. I'll keep you guys posted. :)
  • Icarpenter: this is an interesting procedure. Would you like give us more detail regarding what your son was diagnosed with, what the testing reports said and what happened during the procedure (what the scope of the procedure was). That would help us to understand some more about the procedure, when and why its used and how it works.

    Regards.
  • Sure, I'd be happy to give you any information I can. We searched for a diagnosis for about 4 years before getting a diagnosis of Internal Disc Disruption with Annular Tears. His doctor explained that the nucleus of his disc was torn and leaking a very irritating substance out onto the nerves surrounding the disc causing constant pain. This was diagnosed with a discogram. This test showed definite disc problems on the lowest two discs in his lumbar spine & probable problems with the disc right above. The procedure he had done basically involved injecting the discs with substances that naturally occur in your body and are responsible for sealing & healing wounds. The idea is that these substances will seal the tears in the discs and allow them to heal. The procedure was done on an outpatient basis and the entire process, including time in the recovery room took about 3 hours. They said the recovery process takes about 6 weeks. He has to be very, very careful about movements/lifting, etc. for at least 6 months, and won't be considered "back to normal" for a year. We're still in the early stages of recovery (almost 5 weeks). I guess time will tell if it worked or not. There are lots of articles about this procedure. If you just type in Fibrin Sealant for the spine you should be able to get much better information than I can give you. But, if you have other questions I can answer, just let me know.
  • Well, no good news. Six weeks into this and he's in the hospital due to extreme pain. Went to the E.R. during the middle of the night two nights ago due to an huge increase in pain. They couldn't get the pain under control there so he was admitted. MRI showed swelling in the spine causing the pain. No infection, thank goodness. Tissues in L4 and L3 discs are holding fluid due to procedure. Guess we just have to wait it out. Minimal pain relief right now. Didn't think I'd ever say this, but this is worse than anything else we've gone through so far. Doesn't look like we'll be going home any time soon. Wish I had better news.
  • Hoping the pain gets under control soon and things starting looking up for you guys.
  • lcarpenterllcarpenter Posts: 131
    edited 01/26/2013 - 4:03 PM
    Thanks Dave for the good wishes. :)
  • lcarpenterllcarpenter Posts: 131
    edited 01/27/2013 - 5:13 AM
    We've been in the hospital since Wednesday night. Very limited progress. Pain still not under control. Rarely under a 9 with spikes to 10 every 2 hours. That's with IV pain medication, steroids, muscle relaxants, etc. as often as they can give them with medication by mouth in between. Are we EVER going to get a handle on this? Doctor who did the procedure is 3 hours away, so no chance of seeing him. No way to find out how to address the underlying issue that is causing the pain. What to do??????????????? This is a nightmare. On the positive side - nicest hospital ever. Caring doctors and nurses. Very professional. Super atmosphere and very nice private rooms. Room Service!!!
  • lcarpenterllcarpenter Posts: 131
    edited 01/30/2013 - 7:16 AM
    Still in the hospital. Still in lots of pain. They've officially ruled out an infection. Yay! 2nd MRI is still showing lots of inflamation at L4. Undoubtedly this is causing severe pain. Also showing a new Smorls Node there. Why??? Anyway, apparently we just wait until the swelling goes down and the pain decreases enough that we can go home.
  • I wanted to wish your son a speedy recovery, I hope he is doing better. And I hope you continue to have the strength that a parent needs when they are faced with situations like this in life.

    Take Care.
  • lcarpenterllcarpenter Posts: 131
    edited 02/01/2013 - 2:59 PM
    Thank you so much the kind words and encouragement, Scuba! We're hangin in here.
    anelsen, I've tried to answer you post several times, but it's not saving - may have something to do with the wifi connection here at the hospital. Anyway, i think we're on the same page. This was the disc that was injected (one of 3). My "unprofessional" opinion is that the pressure on the disc from being injected forced the disc through the endplate. Research seems to show that schmorls nodes can be painful and cause swelling when caused by trauma.
  • Well, we lasted almost a week out of the hospital. Went for an MRI yesterday and were admitted back into the hospital. Getting antibiotics for a possible spine infection. "Intravertibral Disc Herniation" (Schmorl's node) has progressed further into the bone. This is heartbreaking to watch. Severe pain. Has a hard time even standing up, much less walking. 19 years old! Not fair! Spine doctor here (not the one in Tyler who did the procedure) is considering surgery if this doesn't get better quickly. He is an awesome doc who I trust, so we will do what he recommends. Ugh - four years of trying everything known to man to avoid surgery gets us in this position and surgery anyway.
  • Did your Dr. really tell you "that his discs should be completely back to normal."??? This is stated in your intial post.

    I am only asking because of ALL the research I have been doing for about 6 months, NO WHERE do I find that.
    At best, 50% of the patients get 50% pain relief. And this was in clinical studies because currently Fibrin Sealant is not FDA approved. However, there are ways to get around this not being FDA approved and you can get Fibrin Sealant injections. Our Dr who is "best friends" with the Dr who developed Fibrin Sealant in Tyler TX said that the sealent doesn't stay in the tissue and that it actually goes away in a period of time. And that they think (THINK!) that the sealant changes the enviorment of the disc and that is why SOME people find SOME relief.

    Not to pop anyone's bubble .... BUT we were super excited because of the interview done on CBS about the Tyler TX Dr who invented/discovered/created (whatever) Fibrin Sealant. Then we researched this Fibrin Sealant proceedure. After finding info, we went to Bloomington IL where they are currently doing Fibrin Sealant Clinical Studies there.

    My husband has had chronic lower back in L2, L3, L4 and L5. He non sugical candidate, however, if we go to enough surgeons, I have no doubt we will find one who will fuse 2-4 discs at 48 years old.

    At this time, we are going thru what Bloomington IL recommends which is a Discogram. This will confirm that his pain is from his discs. I have no clue why this is being done now .... and not earlier. The Fibrin Sealant may be an option, but from what I have researched, this only has 50% chance of lessening his pain and in NO WAY will he have zero pain relief from what the clinical studies are reporting....

    I've always felt that if it sounds too good to be true, it probably is.

    I hope the best for your son!! But I am concerned that any Dr will tell you that they can give you 100% pain relief on chronic lower back pain.
  • the doctor's research assistant told us that his discs would be back to the way they were when he was 4 years old.
  • we have had quite a few "complications" following this procedure and have no idea what the outcome will be. Not intending to promote this procedure at all. Just reporting on what we were told and what our experiences are.
  • lcarpenter, very sorry to hear about your son. I can relate to him. I'm 29 now, but had back pain since I was 14-15 years old. I was always treated for muscle spasms by my family doctor. I WAS an athlete and he just thought I had sports strains, etc.

    At 25 I had my first laminectomy/discectomy, and then another at 28. First one lasted a couple years, second one about 3 months. At the L4/5, L5/S1.

    In November of 2012, I also traveled to Tyler, TX for the fibrin sealant treatments. Here is my story of how it went/is going for me:

    Had procedure done on Wednesday, traveled back home on Saturday. Those first days I had minimal pain, just some pressure. I was taking the medication as prescribed. All in all, I felt good.

    After I got home, I thought I was sensing improvement each day. I would walk 18-20 minutes with very little discomfort. The leg pain I had before was virtually gone, and the back pain was gone except for the "pressure", which is what I'm sure your son was talking about. For 8 days I felt really, really good. I had pretty much cut my medicine intake by 1/3.

    Then, on the 9th day, I was making a sandwich in my kitchen. I was just standing there when without warning I felt a "slip". My pain immediately shot to a 10. It was literally the worst pain I had EVER felt. I would actually scream in agony. My wife didn't know what to do. We contemplated going to the ER as well. But, I didn't. I took a double dose of meds and tried to get through it. For 3 days, I could really only move enough to get to the bathroom. I had severe pain in my back and legs. We called my doctor and he was not too surprised. He said it was to be expected and if I could take the pain, to wait it out and it would subside. This made me feel a little more relaxed. I thought something was wrong and he would be really worried.

    On the 4th day I started to feel a little better. I still hurt, but was at about a7-8. I even got out and walked for about 10 min. Over the next week I got better each day. Then, on December 16th, I had a ink pen and was writing a reminder on a note pad, I bobbled the ink pen for just a second and BOOM. It was back! I went through the same pain...but this time it only lasted 2 days.

    The next 4 weeks I had good days and sore days. But nothing like the first 3 weeks. I have walked exactly how the doctor told me to and tried to do everything he said. My back and leg pain pre procedure was anywhere from a 3-7 daily depending on the day. Now I am at a 1-3. I am off the medication completely and still walking. After 3 full months, I can say that for me, and this is only for me, that I consider myself lucky. There were times that I thought I had made a mistake and I regretted doing it. Especially when that first wave of pain hit me.

    I am sorry to hear about your son, I truly wish him the best. And though it sounds like he has a few things I didn't post op, I wanted him to know that he wasn't alone.

    If anyone has any questions, I'd be happy to try and answer them.
  • franklin693 you can not imagine how glad I am to hear from you! This gives me hope. At this point, 2 1/2 months post procedure, I was about to lose all hope! We certainly were not told about the possibility of any of this - not this type of pain, not the length of time for recovery, not the possibility of developing schmorls nodes due to the increased pressure in the disc, not any of the complications we've encountered. We were not at all prepared. Another wonderful complication crept up today. His neck became very swollen and painful. Turns out it's a complication from a botched picc line which "migrated" from his chest into his neck. They were afraid he had a blood clot. After being at the hospital for 7 hours worth of tests they've decided it isn't a blood clot, but they aren't sure what it is. Great. His infectious disease doctor is furious with the other hospital who did the picc line. The joys of this whole nightmare just keep coming!!! But again, thank you so much franklin!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  • Thanks so much for hoping for us! The "fun" continues. LOL. I agree with you about the doc not being available. It is extremely unethical, to say the least, to leave a patient hanging out there without any support whatsoever. I have to say though, that I'm not sure he was made aware of the complications were having initally. I called and texted, etc. and it was impossible to get around his research assistant to talk to him personally. His assistant just kept texting me that they were busy or out of the country and to just go to the emergency room if we were having complications. Never underestimate a determined mom, though. Ha. After a little detective work I was able to email him directly and he has been very available since. He even offered to drive to "Dallas" (no where near where we are, though), to come see my son - which I thought was very nice. That's not to say that I'm happy about the whole thing - I think it was way too little, way too late! Thanks for being in our corner anelsen!!!
  • Has anyone tried Hyperbaric Oxygen Therapy Treatment for Spine Condtions? I've been doing some research on it and it does sound interesting.

    Take Care.
  • Never heard of it. Will look into it! Thanks, Scuba!
  • Hi Lccarpenter, I hope your sone gets better... I really do.
    By the way, any progress updates you have? How is he doing now?
  • No good updates. He was admitted back into the hospital yesterday. Schmorls node getting worse. Lots of pain. :( I so hate this for my son. I wish I'd never heard of fibrin sealant. No good options for fixing the damage from it. Sorry. Really bad day for this mom.
  • Yes, I haven't officially heard from his doctor, but the nurse said the radiologist said that the schmorls node was crushing the vertebra even more. Looking more and more like we will have to have that vertebra replaced. NOT what the doctor wants to do, but will do it if necessary. I'm very frustrated and very angry. We did everything we could do for 5years to avoid fusion and we end up having to replace a part of his spine AND a fusion. He is so much worse than before the fibrin sealant. Everyone says I shouldn't feel responsible, but I'm the one who researched the treatment and set it all up. I can't help but feel responsible for putting my precious son thru all this. Sorry, just really down today. :(
  • I'm very sorry to hear about your son having to be re-admitted. Sometimes there are no words that can comfort a "mom" when she feels like this, but please keep in mind, that this feeling will pass. You are an amazing mom!
    Sending you a hug.....
  • I appreciate it so much. In my head I know I'm not responsible, but it's hard to remember that when I watch him in such pain. Anelsen, I'm confused, too. I'm waiting for the surgeon to come in and hopefully we'know more. I'm not sure why he's talking about replacing the vertebra, but I know he's worried that the bone structure has been compromised so much that it might not be strong enough. So he's for sure fusing at l5 and possibly replacing the vertebra above. The schmorls node is at 3/4. I just know that if we hadn't had the fibrin sealant we'd just be looking at a fusion at l5 and nothing else. On a positive note, I really do like our spine surgeon here. He even came to check on my son on Easter night. Thanks everyone for your kind words.
  • Went in for surgery yesterday. They fused at l5 and "mechanically stabilized" at 3/4. The doc said everything went great. He's in lotttts of pain right now. They wouldn't let me stay last night and when I got to the hospital this morning he said I had to leave because he didn't want me to watch him be in so much pain. So I'm sitting here in the waiting room wondering what to do...stay because he may want me there in a little while...go to work so I can keep my job...go home and clean house??? Ugh. Can't decide.
  • I just wanted to ask how your son is doing? Better I hope, and how you are as well. :)
    Take Care.
  • Hi Scuba! Thank you so much for checking on us. Yes, anelsen was right. We ended up in the hospital again on April 13th. My son started running a high fever and was really very sick. Bad headache. Lots of extra pain in his back. Of course we were so afraid it was the spine infection resurfacing. Long story short, after tons of tests, ct scans, etc. they finally decided that he had viral meningitis although they couldn't do a spinal tap to confirm it since he had just had lumbar back surgery. But he had every single symptom. I never thought I'd be glad for a diagnosis of meningitis for one of my kids, but at the time it seemed far better than another spine infection. He was in the hospital until the 19th. Oh what a difference a week makes! He is soooooo much better than before at this point (and I'm knocking on wood as I write this - yes, we are a baseball/superstitious family - lol). Back pain is way, way down. He even says that sometimes it doesn't hurt at all except for the "soreness" from surgery. Makes me wish we'd done the fusion a long time ago. :( Hindsight... Anyway, I really appreciate everyone's concern, thoughts,and prayers. It's sure been a long, difficult road we've been walking since December 12th. This mom is really hoping for good things for her boy from now on.
  • I am soooooooooooooooo happy that your son is feeling better & you as well. :)
    Take care. :)
  • Thank you so much for your concern!!! I hope things are going well for you!
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