PCS and possible CSF leak
 

Hi all,

I am new here - I am a 36 year old female, and I was in a car accident on 8/23, and had whiplash and a concussion. I feel like the whiplash is cleared up mostly. I have had CTs MRIs of both the brain and the cervical spine. All were mostly normal - a mild annular bulge at C5-C6, and some foreaminal narrowing, but nothing significant.

So, I am having orthostatic headaches which are resistant to gabapentin and Norco. My doctor put me on Lyrica last week, but the headaches are just as bad. The feel like a lot of pain in the occiput, and the top of the head. The pain is also in the neck.

My neurologist thinks I may have a CSF leak, so he wants me to do a radionuclide cisternogram next Thursday. This test is a pretty big deal with radiation and a lumbar puncture. They are planning to use CT and fluoro to guide the puncture, and it is a good hospital.

I went to the ENT to get a consult and he did a high res CT and says that he doesn't see any fracture in the sinus, and thinks that the test will be a waste of time and potentially harmful. However, he did not offer any explanation for my medication resistant headaches.

So, I have to decide if I am going to have this test which my neurologist recommends and my ENT thinks is a bad idea. I was wondering if any of you had been in a similar situation, or if you had any advice for me.

Thank you.

donsdatter,

Welcome to NeuroTalk. I am sorry to hear you are struggling with head aches.

Have you tried acetaminophen and aspirin combined? 1000 mgs of each taken together may offer relief. It is my go-to mix. Gabapentin is an odd choice for head aches as is Lyrica.

Have you been doing any icing of your neck? Even though the cervical MRI and CT don't show a problem, you may have an injury to the occipital/C-1 area. It can cause pain and tension to radiate behind the ears and beyond.

Inflammation in that area can cause quite a mess.

You can make a moldable ice pack by filling a zip lock baggie with 1 part rubbing alcohol with 3 parts water. 15 minutes on, 30 minutes off and repeat as often as possible.

I would try a few more ways before the lumbar puncture, etc.

What is you blood pressure like? Sometimes, a bp med like a beta-blocker will help.

I hope this helps.

My best to you.

Mark, thank you for the welcome. My BP is normal 110/70 at last doctor's visit.

What is a more normal choice for medication? There was some radiculitis, and the neurologist did give me a medrol dose pack and prednisone - neither helped, although the tingling and numbness in my right arm is subsiding some.

I looked online and the gabapentin is supposed to help with tension type headaches.

I will try the ice pack idea. I hadn't heard of the alcohol/water mix before

The whiplash/concussion mix may have misaligned your c1/c2 or other sections of the C spine.
Info-
www.upcspine.com
http://www.upcspine.com/self.htm

If the c spine is stable and no issues that would be compromised by expert chiropractic, or maybe just an evaluation by a highly skilled chiro might be helpful.

[tingling and numbness in my right arm]
Are you having neck muscle spasms?
How is your upper body posture?
head /shoulders hunched or forward of the body?
they can cause many problems as well as trigger points that refer pain & sx to other parts of the body.

My chiropractor says that the adjustments and microcurrent therapy he has given me are usually effective at relieving most pain within 2-3 weeks of the accident, and it has been 8 weeks already, and the pain in the head is still very intense.

I am also seeing a physical therapist 2x a week with little progress.

donsdatter,

I did lumbar puncture and understand your concern. Thought a lot before I did it. Luckily no adverse affects and didn't show any abnormalities. orthostatic headaches are tough (took many months to diagnose even for George Clooney and after surgery he is all fine ofcourse:) )

If there is a leak I think the only way is surgery and you will be completely relieved of symptoms. If there is no leak......well......there is no leak :)

I posted in the following link about my experience.

http://neurotalk.psychcentral.com/thread177848.html

Cheers!

So did they just measure the pressures or did they do a procedure, like the cisternogram or something else? I just found out today that the indium they use in the test means that I would have to wean my baby b/c no nursing for 28 days after the test. I'm not as concerned about the LP as the radiation and its effects on my life.

So I am looking for alternatives to test for the CSF leaks. Or alternative explanation for the orthostatic headache. This has really got me in a bind.

They didn't do cisternogram. They measured the opening and closing pressure and took 4 tubes of spinal fluid and did all the tests on that fluid. Nothing abnormal. I have done only MRI with contrast and no problem. It seems like indium may be more accurate for CSF leaks but with your nursing not sure.

As for as other alternative if you have any fluid leaking from nose they can check it out (my friend did once he had headaches and fluid leaking from nose but it was not a CSF leak). I almost forgot. Once this Neurologist ordered an MRI (I have done quite a few) to check for CSF leak using contrast on my brain.

If I am not wrong one member had increased intracranial pressure and suffered a lot and after lumbar puncture she had tremendous relief. It is a different case than CSF leak but just mentioning.

May be you can go after neck first and then try this procedure?

Sorry I understand this is a tough call.

Mark - wow! You nailed it- I went back to the doctor and basically told him that I was not making it up - the pain was very real, and my neurologist wanted to do a big nasty test on me this Thursday, and could he please figure out was was wrong with me.

He reviewed all the imaging and found on the cervical CT done the day after the accident a dislocation of the occipital-c1 joint.

He prescribed me an Aspen cervical collar for 6 weeks and then we will reevaluate. Instant relief from the collar - I still have pain, but I can manage this pain. The pain without the collar completely owned me.

It is so wonderful to have a reason, now I just need to get to a cure.

Do you have any more advice for me? Your first bit was right on.

Thanks so much!

Susan

Susan,

Great to hear I could help. You need to remember that the collar will cause your neck muscles to atrophy a bit. Maybe a PT can give you some exercises to strengthen them once the 6 weeks are up. The key objective in the six weeks is to allow the ligaments to heal and strengthen. Don't count on the collar to protect your neck. That will be up to you to be careful. Learn to turn at your shoulders.

What other symptoms are you struggling with?

My best to you.