Do I have a CSF leak or possible Dural Tear?

[prking]

i recently had back surgery double lumbar fusion L4,L5 L5,S1 about almost a month ago. I had complications during the surgery and lost 6liters of blood, Ive been experiencing mild to sever headaches usually when i stand for a amount of time or sit or even turn the wrong way, I have been placed on migraine medicine which does not work.The only thing that seems to have worked, is laying down for a long period of time. I have also been experiencing high blood pressure, since the surgery and also have rapid heart rate.I've been dealing with this ever since I was discharged from hospital. I returned to my surgeon and all he says, is that he does not know, and my symptoms are not a result of the surgery but refused to check to see if my complaints were valid.I have since visited my primary care doctor and she placed an order for a complete blood work up, Unfortunately, my next scheduled visit with the primary care physician is scheduled for a month out.I have been prescribed medication for migraines which does not help at all.I have been reading many articles on CSF leaks and many of the symptoms that are listed I have experienced.Symptoms such as, tingling and changes in hearing at times.My biggest fear however, is the headaches and  high blood pressure. I am only 26yrs old  and a non smoker. If anyone has any clue or could help ease my mind it would be great and if needed my blood pressure has reached as high as 159/103 and HR is usually around 115.


This discussion is related to Long term CSF leak causing progressive damage?.

[Ireland25]

I have had 3 discs removed at L3, L4 and L5 S1. I had a csf fluid leak which occurred during a discetomy for L5 S1. Post surgery the fluid leaked through my scar and a bump appeared where the scar was. I had revisonary surgery to try and fix the leak. This time I was put on bed rest and conservative treatment.  I suspect I caught meningitis in this surgery as they were very worried about my headache post op and gave me meds for menigitis but never confirmed same. I went through 2 or 3 years of low pressure headaches and spinal migraines. It was the worst pain I have ever experienced and I have a high threshold of pain. Eventually some of the symptom's eased. Caffeine helped reduce the low pressure headache symptoms. I started drinking coffee on a daily basis. Coke was also mentioned as a remedy apparently caffeine helps produce spinal fluid. The hospital told me this. I went to migraine clinics and undertook their treatments such as nerve blocks, migraine meds etc. None of the migraine meds worked. I was told to train the migraine out of my body which I have done successfully. I don't like taking medicine and I searched for natural remedies. One of which that worked for me was Vicks Vapo Rub on the temples. I still use this today if I get migraine symptoms. I learned to meditate and started working part time. I developed healthier coping mechanisms and learned to train migraine out of my body. I don't want to over simplify my answer but it worked. To this day I might still have a slow csf leak happening in my body. They confirmed it was still leaking but that it wasn't harmful apparently. Which does concern me obviously. I don't have any headaches or migraines and I have an ok standard of health. I worked hard at recovery and eventually I got there. It was a long road though. I wouldn't wish this experience on anyone. I hope you get help and feel better soon.

[jerdey36]

I had a major due tare aftermath spinal fusion. The doctor told me the same thing and the migraines were awful. Had tingling in my legs n feet and overall major lower back pain and other symptoms. I Had to basically threaten the neurosurgeon and finally Have me a CT scan and found a major rupture. Demand a CT asap. You know your body best. I also Had significant dizziness and High blood pressure also......
Do not take No as an answer.  Theory time i got telling was to lay flat n close my eyes. It's a horrible experience. I wish you a speedy recovery.

[hemyinspain]

I had spinal surgury on slipped disc in my lower back in sept 07, a week later i had a severe fast csf leak, I was rehospitilised, operated on to fix leak, then suffered meningitis caught in theatre, then further severe leak.  Further surgery followed again to repair leak. 3 months later i was sent home where 2 days later I suffered the same symptoms although the liquid could not leave my body at this stage as the scar had healed and a large grapefruit fluid lump formed under the scar. From this date I have been trying to get a diagnosis. I absolutely believe I still have a slow csf leak. In July 08 I had a series of nuclear scans which after 48 hours showed displacement of the dye and leakage and unexplainably the dye around the brain did not move or disipate at all during the entire 72 hours of scans.  I have been under various neuros, Londons UCLH neuro department, Plymouth neuro and surgical departments, POTs testing, caffeine infusions, x rays, failed blood patch (failed due to inabiliity to get the needle through the scar tissue) ICP Bolt pressure monitoring etc. You name it, they have all done it. All inconclusive.  Now I am at the end of the road and the end of my tether. No one will do anything. I have seen a Dr specialising in Migraines in Harley street who agreed that there is no way I have migraines.  he gave me botox into my forehead above the eyebrows to numb a nerve that runs behind the eyes and I have to say that was incredible and almost completely stopped the pain behind my eyes for approximately 2 months.  But my headache from low neck and all the rest of my head was still there.
I have severe headaches each and every day. I wake up with a level 2/3 and by mid afternoon the pain is at an 8/9. I find long conversations very difficult, causing my headaches to increase, I cannot concentrate well, I have ringing in my ears sometimes and struggle to cope with loud noise, my balance is poor, pain behind my eyes unbearable and vision seriously affected. One eye drooping more and more on a weekly basis (although the botox did help that for a while)  Laying down eases my headache so long as I dont use too many pillows or tilt my head/neck too much. If I say on my tummy and arch up with my shoulders even a small amount my headache increases so rapidly! Also if I am stood up and I arch backwards a small amount the same happens.
I truly believe that i still have a leak or perhaps a movement of fluid blockage and I do not have migraines.  Can anyone please please help me or advise me what I can do now?  Where can I go?  Who can I turn to? Who will listen?  I lost my business and my home due to the original surgeries and am sueing the hospital in spain (Tarragona) where it was carried out but to be honest i would live in a tent if my head would stop.  I have been seriously depressed and even attempted suicide twice in the last 18 months however thanks to an amazing counsellor who has seen me for 4 hours every week for 15 months I am mentally and emotionally stronger and much more stable, i just cant cope with the pain.  Since all of this happened I now have a problem with my heart that no one knows what it is, inverted Twave apparently with skipping of beats and chest pain on any excersise, not that I can do any because of my head. It seems I am Sarah with no answers.  I cannot go on like this and need so desperately to get rid of my headaches even if only for 3 days a week.  I am so hoping someone here will have some advice that will help me finally get some answers.
Thank you for reading.
Sarah

[jakethesasquatch]

IH (Intacranial hypotension) is when your fluid is, for whatever reason, too high. I've been going through about the same as you for the past couple years, the constant headaches being the worst part. Horrible in the morning, calms back down during the day, then shoots back up again at night. I just got out of the hospital for a 3 day stay where they did the nuclear study to check my csf leak, (2nd on, I got my first repaired a year ago.), but my opening pressure was way too high on the LP when the put in the isotope. MY doctor suspects a problem with the heart, causing too high intacranial pressure, which causes such horrible headaches, but also makes it more likely to burst another leak. When your pressure is too high, it poses a threat to your optic nerve, it sounds like you need to see a heart speciality, neuro-ophthalmologist,  and an ENT that specializes in CSF leaks, because if your pressure IS too high, your vision is at risk. The doctor I'm seeing is Dr. Edward Hepworth in Colorado. He's amazing, and isn't just interested in fixing leaks, but figuring out the whole problem and getting you to the right people.

[prking]

i just came back from er and they said that they think it is also a csf leak or dural tear they said they couldnt do anything over there because of my cage that surrounds my L4,L5 the doctor tried to get in contact with my surgeon and was unsuccessful long story short the doctor wrote me something to give to my surgeon on what he thinks it is i have an appointment with my surgeons assistant friday. What i wanted to ask is what different ways could they go about taking care of this since i have a cage in the area that they would insert the blood clot? thank you very much for your advice  

[Dr Sharma]

Hi there. You could have possibly had a dural puncture during the two level lumbar fusions. CSF leak or post Dural puncture headache due to drag on the meninges from the leaking cerebrospinal fluid and displacement of intracranial structures. Bed rest and lying down flat from sitting or standing characteristically relief of symptoms. Adequate fluid resuscitation and NSAIDs when required. Epidural blood patch is tried if these measures fail to provide adequate relief. Check your basal blood pressure for a few days and consult your physician for antihypertensive drugs like beta-blockers and other supportive measures like salt restriction, weight reduction, adequate sleep and decreasing stress. Check out your hemoglobin levels for anemia. A detailed cardiac evaluation is required. Hope these help. Take care.