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spinal fluid leak - headed for surgical repair - any wisdom??

adventureraadventurer Posts: 22
edited 06/11/2012 - 8:51 AM in Lower Back Pain
The saga is continuing. I had one blood patch, which helped for about five days, spent about a week down hoping it would heal, had a second attempt, this time with fibrin glue and then a blood patch on top of that glue. Stayed down for a week. Never did hold that time. Tomorrow I am headed back to Rochester for pre-0p and surgery scheduled to go in and deal with the spinal fluid sac that has formed and to surgically seal up the leak. Then I will stay in the hospital for a week on 24/7 bed rest. Sure hope this works, as it's like your life is being drained out of you. I've had leaks before but never had to have the surgery to stop it. With my tethered cord and surgeries inside and outside the cord and being six months out of the second complicated fusion, and knowing there is a lot of scar tissue I'm not sure what to expect. Has anyone here had some experience and some wisdom they can share? Sure would appreciate it!! God has been so gracious each step of the way, giving me peace and strength, but I can't say that the road has been easy. Just need to hear from someone who has been there.


  • I wish I could add thoughts or information of wisdom, but haven't been through what you're going through. I just wanted to let you know as one of my buddies, I will keep you in my prayers, and send you positive energy for this upcoming surgery you will undergo. Gentle support *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I had surgical repair of a CSF leak and it wasn't bad. The hardest part was obeying the "lay flat" order. I think just about every time the surgeon came by to check on me he kept saying "that's not laying very flat". I was feeling so much better, that I really found it difficult to stay flat for several days. I always seemed to get busted when it came to eating. I would raise up on one elbow to eat and in would walk the doc or a nurse.

    Hope you find it to be as easy as I did. I had a double laminectomy done during the same surgery and a patch placed over the dura from above L4 to below L5.

  • find a top notch consultant you dont want an idiot working on your spine
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • So far surgery is still set for Wednesday, but there are a few hurdles. The neurologist agrees he's sure it a spinal fluid leak, but to be extra sure, he would like me to have an mri - would be no big deal except that I have a medtronics spinal cord stimulator implanted and for the most part cannot have an mri. They have come out with some newer recommendations saying that they can be done of the head only as long as the wires are not near it, but there are very specific rules about the way it is done, the strength, and what has to be checked on my stim and all programs must be zeroed out and turned off otherwise it can damage the device and or melt the wires and do bodily harm. I don't want to do the test, but tomorrow I will find out if I have to do it before my surgeon will do surgery. My surgeon is also looking at modifying the surgery and putting a drain in to drain the spinal fluid that has accumulated.

    That's SO MUCH for your posts, prayers and ideas. I do know I am in good hands. I have a great surgeon and team here at Mayo in Rochester MN - and the master surgeon is God, so what more could I ask for?
    Will post after we know what will happen or after surgery.

    Shirley the Adventurer!!
  • I had the excess fluid drained off several times. A few times it was done via syringe through the muscle so that it remained contained without surgery. Then I had a shunt placed and basically had a drain from my spinal cord into a bag where the output was measured every hour for several days. Was pretty wild and I couldn't raise my head up or anything other than lay flat.

    I would definitely be concerned about having an MRI, especially if your SCS is a cervical one. The wires are so thin, that any heat induced into them from the MRI, would quickly and easily travel to either the leads or the IPG. Let me know what you find out from the doc.

    I always try to keep in mind, that all the things I wind up going through or having to endure, allow me to help others in similar situations as well as give the doctors more education as to what can happen when it is least expected.

    Keep us informed.

  • Hagland, thanks for your imput. My MRI is scheduled for tomorrow morning, but I jumped through some hoops before they would do it. Pain clinic checked for any open leads, we will shut down each program and then then stim itself. Then we were required to have a physicist present during the MRI and it has to be a special coil head thing with other restrictions. After that they plan to try the lesses of two options. Sounds like the one you had. They will put in a drain and I will lay flat for up to five days, in fact the nurses will turn me, I can't lift my head or reach or anything. Idea is to take pressure off the leaking site, in hopes it will heal with less spinal fluid in the canal. Of course, they have made another hole, in skin that doesn't have scar tissue, so we are hopeful this will work. Like you said, laying there is the hardest thing, but I will do it to get rid of this. I was so encouraged when I read your post and then today the Dr. talked about the same thing!! Thanks!!

    And so another adventure begins!

    Shirley the Adventurer
  • The MRI showed signs of a little brain sag, so they proceeded to put a drain in my spinal canal. They also did another blood patch at the sight of the original leak. That was Wednesday. I am posting on Sunday evening. The last five days I have had to lay flat in the hospital. The nurses turn me, cath in, Iv's and they come to drain spinal fluid out every hour twenty four hours a day. Tomorrow they will clamp off the drain, let it come back to a normal level and then gradually get me up. If the pressure holds, they will take out the drain and then down again I will go for at least another 24 hours. If this fails, my Dr. will go in and surgically repair it. My feeling is that wherever we are, we have the choice to bloom where we are planted and try to bring joy to others, or be a big complainer. I choose, with the strength of God, to make the best of it - it's an adventure, just a different kind.
  • Well, I see I left off on day five in the hospital. The day they clamped off the drain I felt great. Then when they removed the drain I had to lay flat for another day, then another as the symptoms came back. By day ten, trying to get up as much as I could, it was decided to send me home to lay for about three or four more days and see how it goes. Didn't help. Last Thurs. I went back and this time they did a blood patch on the second hole, the one from the drain as we think that is the one leaking. Laid flat in the hotel for three more days, then came home. Nothing has changed for the better!! My surgeon is trying to avoid surgery because he says that so much of the inside of the cord is ad-herd to the dura because of the surgeries to untether the cord. He's afraid of damaging the nerves with the needle and each time we go in we are chancing a bad infection. they are talking about redoing the head MRI and possibly putting a needle and dye into the cord up by my neck to see if they can for sure locate the hole. Has anyone had this done? They also are wondering if I have thin dura because of how easy I get leaks. Any ideas floating out there? I am so tired of this journey. It's been a year since the original injury and ten weeks on this leaky pipe business.
  • Hi, I hae been reading your posts on here. I note that they are some time ago and I am researching all I can as I too am a leaker (possibly)
    My story is long and quite horrific also. I just wondered how you are feeling now and also what is i a spinal cord stimulator and why did you have it implanted. What is it supposed to do exactly?
    I had spinal surgery in 2007 for slipped disc but due to surgical error I was left with a huge CSF leak. Repaired 12 days later, contracted meningitis in theatre, another huge CSF leak but couldnt be repaired until meningitis cleared up. Further surgery to fix leak, 3 months on complete bed rest, sent home, another leak which formed a grapefruit size lump in my back, Hospital wouldnt admit me or see me so just lay in bed at home. Been like this on and off, the lump disipated but I have constant headaches all day every day.
    I wondered who your neuro is and who is treating you? I am based in the UK although all of my initial problems started in Spain when I was living there. I have now exhausted all the specialists in the UK and am hoping to get a referral to see Dr edit or Dr edit through the british National Health Service.
    Apparently these docs are the best in their field.
    Anyway I do hope you are getting there.
    I am a member on csfleak.org and also in csf leaks on facebook both of which are amazing scoures of information and friendlyiness and support.
    All the best

    Edited for specific physician names or health care facilities name

    Post Edited by Authority Member Liz

  • Just to let you know, we are not allowed to mention doctors names on this forum. I am in the UK too. What part are you located in? I am in Sussex.

    It sounds like you are having a rough ride. Are you still having problems with leaking? It is hard to believe that it has not been fixed since 2007.

    Do they have a plan to help you?

    Adventurer ???

    How are you now? I hope that they sorted out your leak and you are now recovering well.


  • Hi
    I didnt realise we couldnt mention doctors, seems a bit odd when all we are trying to do is find a way to get healed and sealed, but then rules are rules i guess lol.
    No no plan so far, am discharged from top hospital in Queens Square London, ''migraines''!! NOT
    so I am fighting daily writing to neuros, talking to america talking to my gp who is backing my attempt to go to the us, and talking to The Exceptional Treatments committee in the UK who are the ones who would decide if I can be referred or not. Is there any way I could talk to you to see if you hae had any luck with any specific neuros in the UK because I have been through 4 so far with no joy at all. I guess that is why csfleak.org and the facebook page works so well as the advice is amazing. Im based in Devon.

  • I have sent you a PM (Private message).

    I haven't even heard of The Exceptional Treatments Committee!

    I do hope that they will find a way to help you and stop this leak.

  • LajonchereLLajonchere Posts: 2
    edited 04/27/2013 - 3:41 PM
    Hi. I've never written on one of these blogs before but I've certainly read most of the posts since January. I'm at a turning point in my life and I'd like to tell my story now. On January 10th I had an L5-S1 fusion which was perfect. I have suffered from chronic back pain for over five years since having my two children and had seen various neurosurgeons. In 2009 I had a discectomy and the surgeon told me I was crazy that I continued in such pain. I tried everything for years - PT, yoga when I could, pilates when I could, chiropractor, manual manipulation specialists, acupuncture, meditation, breathing specialists and of course psychotherapy. I have talked about my parents for years in therapy and quite frankly never got the connection between them and my back pain. Finally on January 10th a surgeon fixed me - I literally woke up from surgery and could sneeze without pain in my back. My sciatica isn't great but certainly manageable and for the first time in 5.5years I don't have back pain. Here's the difficult part. Two and a half weeks after my surgery I got horrible headaches that made me throw up when I'd get up. I actually couldn't get up my head would hurt so much. They MRId me and saw a fluid collection and after two failed blood patches I went back to surgery. Again it was magic. I woke up and no more headaches. After healing from the surgery which was rather quick, I was cleared for PT after a few weeks. I was so happy. I started PT, followed instructions which admittedly for my Type A personality was difficult, and was on my way back to life. Six weeks after that second surgery on Feb 11th, the headaches came back. This time it was different. I had this weird smell in my nose and my ears were popping a couple of days before the headache onset. Then on Wed, March 27th, the headaches came back. They started slowly, only when I would be up for a while. Then they got worse and my head hurt every time I was upright, either sitting or standing. After a few days of lying around I called the surgeon again and went through the whole process. Back MRI, brain MRI, more blood patches, but nothing. I had a myleogram which shows nothing. All my diagnostic testing is negative but I still have the headaches. Unfortunately I am getting worse, and not better. I have been horizontal for four weeks and three days now, with the exception of going to the doctor, and I feel they see me as hopeless. There is nothing they can do, they say, because they can't see the leak on the scans. I don't take any medications and am otherwise healthy. I don't have heart problems or lung problems, or weight problems. Somedays are better than others after a lot of caffeine pills. Somedays, like the past few days, are terrible were I don't sit up to eat. To add insult to injury my husband is a surgeon himself and has rendered me hopeless as well. I have two small wonderful children and a job that I love that is patiently supporting me fully until I can get back to work. My team needs me and I need them. I have never felt so hopeless before in my life. I have names of other neurosurgeons that I will try to see but I will go anywhere in the world if someone has any idea of a CSF spinal leak specialist that can help me. I'm not into taking pain medication but the headaches get so bad sometimes that the muscles in the back of my neck hurt. When this happens every other day or so I will take pain meds at night to sleep. Any, and I mean any, ideas are welcome. I think this is an excellent forum. Thank you for reading.
  • I've been reading the blogs and Lajonchere, I feel so bad for you. You should NEVER feel hopeless! Especially when you have baby's that depend on you. Be digilent until you find a doctor who can fix you!

    I have had spine problems for 12 years and even though I have had issues, I have done alright. However, that being said, I fell in February and after having a lot of pain, I found out that I had developed a cystic mass on my spine and had to have it removed and the L4-L5 repaired. I had that done on March 20th. I'm an accountant so afterwards, I was spending 12-16 hours a day working on tax returns. I knew that I was having headaches every day but I thought it might be allergies or stress. Anyway, my back was swelling bigger and bigger and finally I showed it to my PT and she made me call the Dr. immediately. I went in the next day and he was very concerned and ordered an MRI. I had it done and it didn't show a spinal leak so the next day, my Dr. drained it. He got 40 CC's out! He said to go home and lay flat and that hopefully it would seal up. Two days later I went back and it had filled back up and he said there was definitely a leak. He told me YEARS ago that the MRI and other tests have their limitations and that there are things that they don't show which other doctors were telling me that I was crazy and wouldn't listen to me. At that time, once he went in, it proved he was correct and that the other doctors were all wrong! You have to find a doctor who realizes this!

    Since the MRI didn't show the leak, he is going in next Wednesday and explore around to find the leak. Once he finds it, he will put in a small catheter above the leak to take the pressure off and then patch the leak. My doctor has had a lot of training in spinal cord injuries and ONLY deals with the spine. I hope that you can find a doctor like that where you live. Even though this is scary, I have every confidence that he will find the leak and repair it. The hard part will be lying still for so long!!! Good luck to you and I pray you find a great doctor. Mine is in Dallas, TX if you can't find one.
    Carri Gutknecht
  • I'm arriving late to this thread... guess why? Because I had a "hardware repair" surgery March 20th, had two major leaks which I was determined to "let heal".... well, by April 9th I hadn't eaten/drank in days, was very ill from the headaches and had to be rushed to the ER.... the wrong ER I might add... I thought my surgeon had privallages at two hospitals that are afflilated with eachother, but I was wrong. It took almost 24 hours to "stablize me" so I could be transported by amublance to the correct hositpal. I am allowed to have MRIs but they don't really work on me because my original hardware (which the top is still in) is stainless steal so it makes the MRI image a huge bright spot, you can't see anything.... so they put me through the CT scanner and no leak could be found. My surgeon felt sure that was the problem so my entire incission (that had recently healed) had to be reopened for an "exploratory surgery" at 11:00pm. They found the leak, he said he had no doubt that one would be fine because he "fixed it every way possible", not sure exactly what that means.... maybe both a blood patch and fibrin seal? just don't know... but he stapled me back up because he was affraid that there could be another leak he couldn't find around all the hardware, so if I woke up with the symptoms, they'd have to go back in and possibly remove some of the hardware to hunt a second leak. Thank goodness that wasn't the case. I had to lay flat for 2 days, but then I was released to go home and "take it easy".... It was by far the worst I've been through. I wish I had NEVER put off the repair. They knew there was a leak before I was released from the March 20th surgery but I was the one that was "bull headed" and was so sure it'd just heal.... I'm improving daily. I hope you are doing much better.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • Thank you so much for your thoughts. I will keep looking for someone who can help me, and I'm glad to know that I'm not entirely crazy. I live in Seattle but if I can't get hope soon, I may ask for the Dallas doctor's name and go there.
  • How do you know you have a leak? I had L4L5S1 Surgery march 13 and im still in a lot of pain. Hope you are all doing good, pain free thanks kathy
    Kathy B

  • I have not had a spinal fluid leak, but I believe that the main symptom is an awful headache which improved when you are lying down. Do you have a bad headache?

  • No headacke, Im just in so much pain and I thought I would feel better by now.My surgery was march 13th L4L5S1 and I felt better than went backwards.I have real bad back and leg pain.The dr says its normal but im just so frustrated.
    Kathy B
  • I had a lumbar fusion of L4/5 3 years ago. I certainly remember experiencing 'flares' of my pain even after I thought I was well into my recovery. I think it is very easy to think that you are moving forwards in recovery, over do it and then set yourself backwards for a while.

    Have you tried icing? If it is due to inflamation then icing may help. Most surgeons seem to not like their patients to use anti-inflamatories for at least the first 6 months because they impede the fusion. If that is the case with you then icing may be an alternative to deal with any inflamation.

    I think as you have spoken to your doctor about your pain getting worse again, and he says it is normal and is not worried about it, then perhaps you could ease off on what you are doing and see if that helps.

    I certainly found my single level lumbar fusion had a much longer recovery time than my 2 level ACDF.
    I do understand that 2 months seems like a long way into your recovery and it is very frustrating that you still seem to be having flares and going backwards. If you think of the recovery time for a lumbar fusion as 12 months to really fuse and get to something near fully healed, then 2 months is just the beginning. I actually found that at 12 months I felt very much better but that at 24 months I had improved still further. Now at 3 years I don't seem as good as I was a year ago, but that is another story!

    Are you managing to walk regularly Kathy? I found, and was told by my physiotherapist, that it was the best thing I could do to help myself. Don't go mad and walk too far, but frequent short walks at first and gradually build up to longer ones should help the nerves to not get attached by scar tissue and will strengthen the muscles and just keep everything working. I still walk every day to try to keep things moving. Somedays I start off with pain, but generally by the end of the walk I do feel better. :-)

    Do let us know how you get on and hopefully others will be along to encourage you and perhaps have some helpful ideas to improve things for you.

    Take care,
  • I have been icing and using heat too. I cant walk, I am in so much pain it kills just to move in the bed.My butt is the worst.I try to walk with a cane and im in tears.I hope this doesn't last , im ready to loose it. I cant even get out to get a haircut.Thanks for your helpful words. Kathy
    Kathy B
  • Swhite1294SSwhite1294 Posts: 1
    edited 06/17/2013 - 8:22 PM
    I've had 9 back surgeries and one of those was a CSF repair after Micro Discectomy. All I can say is follow up with any symptoms. I was home 5 days then it was like a water faucet had been turned on. I was changing my clothes about every 5-8 minutes and it was coming out so bad that it wasn't reaching my brain to cause a headache. I was in surgery for 5 hours and spent 8 days in the hospital. When I came of surgery I couldn't feel anything below my waist and didn't walk for almost 6 mths then a total year before I walked on my own. During the weeks after the repair I became deathly ill and pain so bad I begged to die. Finally they did a MRI and a laminectomy with biopsy to diagnose Osteomyelitis of my spine. Having competent surgeon is the most important thing. It's been 9 years and I will forever live in pain but I have gotten back to some sort of normalcy. I have to have a yearly MRI because I developed a Perineural cyst and will not have surgery. All of this could have been avoided if my doctor/surgeon had told me what could happen and what to look for instead of saying complications are extremely rare. My original accident was from a horseback riding accident. The best advice I can give and believe me once people know what you've been through they all ask advice and I tell them avoid the back surgery all together. Rest rest rest, take the time off because your body will repair itself in time and with rest. Herniated disk will retract back in if you rest. I've lost a lot and learned a lot. I got 2nd opinions which saved me, my doctor wanted to do the fusion with a cage and I went to the best in Orlando which saved my life. The doctor told me not to have the surgery as I would suffer another CSF tear and probably would never walk again and part of the Osteomyelitis actually started fusing my spine naturally. So ask questions, research, get 2nd 3rd opinions, its your life and body. Now pain management for the rest of my life, acupuncture which is amazing and exercise to keep the arthritis at bay.

    Post edited to remove name of medical professional and or facility. by The Spine-Health Moderator Team
    Sharlotte W
  • edited 05/21/2015 - 9:23 AM
    Dear CSF LEAK friends, I am 41 and tore my L3/L4 disc about 5 years ago while traveling with heavy luggage through Europe and Africa. I had a protrusion into my S1 that would flare up and cause severe pain about every 3 months for a couple of weeks. My surgeon reviewed the MRI and we both agreed that until the pain was much worse and more regular, back surgery wasn't an option. For the past five years i have worked out mostly with core exercises, pilates, yoga, walking, had regular chiro, massage, acupuncture, biokinetics, etc. This all worked pretty well until 6 months ago when the pain began radiating down my right leg to my ankle. I finally got another MRI 5 weeks ago and the doc said my S1/L5 was so compressed he needed to operate immediately to relieve the pressure. Was concerned about nerve damage. I had been walking with a pronounced limp, sleeping terribly, and in constant pain. I never wanted back surgery but felt like it was inevitable now due to the pain. I asked the neurosurgeon "how many doctors in Johannesburg would agree with this plan?" to which he replied, "there isn't a trained medical professional in the world that would disagree with what I am telling you." My surgeon teaches at the local university and has tremendous credentials. I had the discectomy and lamenectomy on April 24th 2015. The doc removed 2 fragments and shaved down some scar tissue that was protruding into S1. He noticed that my Dura had been compressed and appeared "weepy" and "thin" and seemed to be like "wet tissue". He applied glue to it to make sure there wouldn't be leaking. He told me this when I woke up. All went fine until 1 week later when I started getting these debilitating headaches whenever I was upright. They went away slowly when I laid flat in bed, no pillow. Over the course of the weekend they got worse so i googled "spinal surgery headaches" and immediately realised I had a Low Pressure CSF Leak. The docs agreed when I went in for my staples to be removed Monday morning and re-admitted me to the hospital. They advised total best rest for 3 days and then on Friday, 2 weeks exactly after my initial discectomy, did a blood patch using 30ml of my blood. This didn't work. Had no effect. They put me on a a number of pain meds that all worked to make me extremely nauseous. My doc recommended another blood patch but warned that the next step would likely be to operate again, this time cutting away some vertebra to get to margins on my dura that looked healthy and suture in a synthetic bovine patch to stop the leaking, then do a L3/L4 Fusion. Then the following Monday 11 May I had another blood patch, this time with 50ml of blood. That one worked. Until today. I have been mostly on bed rest other than short walks to the bathroom or the kitchen or around the yard. But yesterday and today I went in the car for short rides and walked and sat upright a bit more. I figured its been over a week since the blood patch and my PT is supposed to start tomorrow. So I need to get out and get up. But today at 2pm I began feeling sharp unmistakable Low Pressure CSF pain in my head. IS THIS NORMAL?? Could I still have a leak? Why would it go away for 11 days and then come back? Should i be worried? There is a lot of combined wisdom in this forum and any advise would be truly appreciated. My doc says it can't be a Leak and to just rest, eat lots of protein, drink lots of water, and keep working to get to Physical therapy. God had been my strength. My wife has been so sweet. We have been together for 25 years and have 4 children (8, 11, 14, 16). I run a energy company and am a very fast-paced person. God is teaching me to slow down. But I really don't want another surgery or to be sick for a long time. Please advise.

    There is nobody on the forum qualified to give medical advice all responses will be members own experiences only
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