CSF leak or Epidural Blood Patch reaction?

[eman]

I'm a 28 year old male. I had some pinching sensations appear about 7 months ago that started in my fingers, moved to all 4 extremities. I went to the best of Neuro hospitals for a Neuro workup. They didn't find anything. No big deal. The catch:
On 1/24 I had a Lumbar Puncture. On 1/26, my first blood patch. It failed 1.5 days later. I try to travel. I make it from Rochester to St Paul. I threw up violently on the flight. I am sent to the ER in St Paul, and have another blood patch the next morning. I felt ok, and flew 6 hours home. That night, I started feeling dizzy, like my coordination blew out. Over the last 5 weeks, it feels like the pressure isn't correct in my head. My dizziness comes on in upright positions (sometimes with a powerful headache, sometimes not). The longer I am upright the worse I get. If I lay down or get my back into a curved position sitting sometimes, it seems like I can get up and walk around for about 2 minutes, then BANG, the disorientation hits me. I've had some local MRI/CT, and a basic Neuro exam. They reveavled nothing, although I think I am suffering from atypical symptoms of a CSF leak, or a blood patch problem. My questions:
1. Does this sound like it could be a continuation of a CSF leak?
2. Did I have a bad reaction to my 2nd blood patch, or did it possibly just not work? . Nothing showed up on recent MRI/CT. Does this mean that I do not absolutely 100% not have a leak?
3. At this point, what tests need to be ordered (myleogram?), and should I get in touch with a neuro surgeon?
Please elaborate. I didn't have space to ask more :(

[CCF-Neuro-M.D.-PW]

It would be interesting to know the details about the lumbar puncture and what size needle was used. Many neurologists are now using smaller needles due to the incidence of postLP headache and /or CSF leak, althogh there is no standard practise of using smaller needles.

THe symptoms could be consistent with a CSF leak and low CSF pressure, particularly a postural headache. I cannot ruleout other conditions on the internet so you should consult with your doctor about other possibilities, but the fact that your MRI is normal is encouraging. CSF leaks generally dont show up on regular MRI/CT.

There are specific studies that can pick up small CSF leaks - nuclear scintigraphy, a nuclear medicine study, can identigfy leaks as can a CT myelogram - these tests should be considered by your doctors, and can be coordinated by a neurologist. Also remeasuring the CSF pressure can confirm a low pressure but this involves another LP!

Good luck

[eman]

I didn't have space to add everything!

Please note, I've never had any history/treatment for headache/dizziness prior to this Lumbar Puncture. I've had an ENT check me out locally. I'm otherwise extremely healthy. The first 3 weeks I felt like I would pass out constantly, and did once. The disorientation hit me after my stiff back started to loosen up. In fact, that's how the first blood patch seemed to fail. I was stretching out my back that night, and the headache/nausea came back. Thus the 2nd blood patch where all my real problems began. I'm curious of the yield in a leak study in the event that my MRI/CT come up clean.

eman

[eman]

Doc,

I've been keeping a journal. Each morning when I get up, I've got about 10 minutes where I don't feel disoriented at all. I theorize that my CSF builds up overnight and gives me enough padding for about 10 mins or so until it starts leaking down my spine and being absorbed into my edipural cavity. Even a small leak or small change in CSF could throw me off. Does this sound reasonable? Once again, my symptoms are only when I'm upright. The taller I stand and straighter my spine the worse I get. I've read that mose leaks resolve in 7 days, and small percentage that don't generally resolve in 6 months. Should I wait it out, rather than get a surgeon involved? I'm unable to work right now. What do you think?

eman

[mad4mustangs]

Dear eman,
I also have had the same thing- twice.  One after an epidural block for knee surgery, the second time after I was being evaluated for possible meningitis.  Unless you have had it, no one knows the intense pain that comes with a  post-spinal headache.  The blood patch did not work for me either.  Time was the only cure.  My headaches, dizziness and vomiting lasted only 2-3 weeks though.  Maybe you are almost getting there.  Do your best to only rest, lay down as much as you can.  That is the only thing that helped me.  Don't drive or get in a car if you can help it, the movement just makes everything worse.  Don't take any anti- inflammatories as this may make your clotting delayed.  I will NEVER let anyone perform a tap on me again unless my life depends on it.  Best of luck to you, I know it is terrible while you are going thru it.

[eman]

Doc,

one more thing, Mayo docs told me the neuro type symptoms (pinching) I have are absolutely 100% not related to this dizziness. This dizziness came post Lumbar Puncture, directly after my 2nd blood patch. I've had the pinching pains for about 6 mo without any progression, muscle weakness, change in gait, etc... So please treat my question as if I had no neuro workup whatsoever. I feel the LP and patches are key to my current problem. What do you think?

eman

[NancyG2]

In 2000 I had a spinal anesthesia, followed by two weeks of hell. I had just given birth to my 5th child and had had a tubal ligation. I was at home with my beautiful son, but having horrendous headaches. I also would momentarily loose portions of my visual field. I walked into walls. The tv screen would be visible except for a corner, for example. I also was having a hard time remembering things, like what month it was. I went back to the doctor and my blood pressure was high for the first time in my life. So, he gave me meds for that and sent me to opthalmologists (three of them) for the vision thing. Then to a neurologist, then out of town for a CATscan. Finally, two weeks later, an anesthesiologist (sp?) suggested the blood patch. At that time my blood pressure was at stroke level. I was on meds for the bp for six months, and it was a year before I felt somewhat back to normal. Now I'd like to know, but haven't found the answer: Was any permanent damage done to me since the leak went undetected so long? Sometimes I wonder....

[Mr. Doe]

Nancy: I had an accidental lumbar puncture/punctures in 1997 during an attempted discogram of L5-S1. I had a CSF leak for 4 days, and then a blood patch on day 5 that failed due to mistakenly continued oral anti-inflammatories. The leak went on another 4 days until a savvy doc (I contacted to do another blood patch) asked what medications I was taking and he alerted to the anti-inflammatory. He told me blood patches rarely have to be repeated and asked me to stop the a/i medication first for a couple days before he would redo the blood patch. He was right, the leak stopped in 2 days. I had suffered for about 9-10 days with the headaches. A year later, in 1998 I ended up in the ER twice, a week apart, with full urinary retention. No reason was ever determined and I have suffered with dysfunction ever since. Over the years other dysfunctions and unusual symptoms have tagged on and I have yet to be properly diagnosed. I suspect I may have a "pseudomeningocele"(false cyst)which formed as a result of the CSF leakage. Such a cyst can apparently develop along the epidural canal and wreak havoc if in contact with the spinal cord, cauda equina, or nerve roots. Anybody with continued or occaisional odd symptoms (like posture headache)long after a significant lumbar puncture/CSF leak might want to study up on this unusual occurrance which doesn't show up readily on many standard scans. I hope that is of some help to you and any others who have had CSF leakage and post puncture symptoms.

[911WOMAN]

I HAD THE NOVASURE SURGREY LAST WEEK DUE TO MY HAVIANG A HEAD COLD A WEEK AGO MY ANESTHEOLGIST FELT THE BETTER ROUTE WOULD BE A SPINAL BLOCK, I NEVER HAD ONE BEFORE AND NEVER WILL AGAIN. WHEN I WENT HOME I WAS FINE TILL TWO DAYS AFTER SURGERY, THEN I GOT THE SPINAL MIGRAINE IT WAS SO BAD THAT EXCEDRIN MIGRAINE COULD NOT TOUCH IT. MY SISTER BROUGHT ME HER LAST TWO MIGRAINE RX PILLS THEY ONLY TOOK OFF THE EDGE, I WAS LAYING DOWN IN A DARK ROOM WITH PILLOWS STACKED ON MY HEAD, MY ANESTHEOLGIST CALLED IN A RX OF DARVESET AND TOLD ME TO DRINK SOME COFFEE WITH LOTS OF CAFFINE, THAT IS WHAT BEGAN TAKING THE EDGE OFF. THE MIGRAINE LASTED 3 DAYS, IF I MOVE AROUND THE HOUSE TOO FAST I GET DIZZY AND A LITTLE LIGHT HEADED. I HAVE A MUMBNESS FEELING IN MY LOWER BACK SOMETIMES IT FEELS LIKE I HAVE A HOT SPOT BACK THERE. MY ANESTHELOGIST MENTIONED A BLOOD PATCH THAT COULD BE DONE, I CHOOSE NOT TO HAVE IT DONE, I WOULD LIKE TO KNOW HOW LONG THE NUMBNESS WILL LAST IN MY LOWER BACK, AND WHEN THE DIZZYNESS WILL STOP ALONG WITH THE OCCASIONAL STABBING PAIN IN MY HEAD. COULD SOMEON'S WEIGHT HAVE CAUSED COMPLICATIONS AFTER A SPINAL BLOCK? OR THE LENGHT OF TIME THEY WERE IN A CERTAIN POSSITION CAUSE THESE PROBLEMS?

[bengalcats]

I HAD A SPINAL TAP 2 WEEKS AGO AND 4 DAYS LATER WAS BACK FOR A BLOOD PATCH, IT FIXED ME RIGHT UP BUT THE HEADACHES PRIOR TO THE PATCH WERE NOTHING I COULD EVER EXPLAIN. I WAS FINE AS LONG AS I LAYED DOWN, AS SOON AS I STOOD UP WITHIN MINUTES I FELT HORRIBLE. I WAS ABLE TO STAY UP LONG ENOUGH TO USE THE BATHROOM AND THATS IT. THEY SAY MOST HEADACHES SHOULD GO AWAY IN 7 DAYS. HOPEFULLY YOU HAVE REACHED THAT POINT.THE BLOOD PATCH WAS WORTH IT.

[namo357]

Wow!
I am a 54 year old male with similar concerns

I have been having extensive tests at MAYO for incoordination issues since March. Had a LP on tuesday, nausea and vommiting 2 days later while driving to Rochester. Wound up in ER in Mankato.
Had blood patch yesterday at MAYO. headache gone today, so far just a stiff back. You mentioned problems with gait, and general coordination. Does it seem like there is a time delay between when you want to move and when the movements happen and when the movements happen they are way off from where your mind said to go with them? ( hands and feet)I make my living by having precise movements with my hands and feet. That is all gone now and cannot get a diagnosis..After the blood patch, the dizzyness seems worse now when I stand up.  I am to have vestibular testing at MAYO on May 1st for balance issues.
Good Luck, Keep in touch