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Spinal pain nerve damage and possible CSF leak
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AaronOz posted:
Hey guys,

This is my first post here. I would like some advice from you all with a back problem I have been having now for the last 2 years.

I will start from the beginning. I have suffered from Sinus pain for as long as I can remember and about 3 years ago decided to do something about it. I was referred to an ENT and sure enough the CT scan identified my sinuses were completely clogged and had essentially hardened over time. The ENT recommended surgery to open up the pathways to the sinuses. I agreed and the procedure was performed.

Months later the sinus symptoms were still apparent so off to get another CT scan. The scan again identified the pathway to the frontal sinus was still too narrow. The ENT recommended further surgery, to which I foolishly agreed.

After the second surgery I came out with really bad headaches and clear fluid leaking from my nose. It turns out the ENT had punctured my Dura near the frontal sinuses.

I was then referred to another ENT to repair the leak. So off we go again for more surgery! An anesthetist performed a Lumbar Puncture in the lower back area and administered a type of dye that would apparently work its way up to the head and be seen via the ENT's endoscope (allowing the ENT to identify the area of the leak and patch the Dura).

This resolved the CSF leak problem for me (or so I thought) however a day later I suffered the same headaches but this time 10x worse. The anesthetist performed a 'blood patch' where he injects your own blood into the LP area to patch the Dura. After some bed rest no more headaches!

Now this is where it gets interesting and I am not sure what the problem is. Whenever i sit down I feel pressure from the tail bone area all the way up to my head / frontal sinuses. If I sit too long I get what feels like nerve pain around the area. I have seen a DR since and he recommended an MRI. The MRI has not been able to identify any problem whatsoever. The symptoms seem to resemble those of sciatica. When I stretch the hamstring nerves I notice significant reduction in pain (laying down and pulling one leg at a time vertically to my chest). The DR prescribed Lyrica and this helps with the pain however I cannot tolerate the side effects (depression / memory loss etc)

I have started going to the gym now and I think I may have irritated the nerve or area as I'm suffering from pretty bad nerve pain now. What I have also noticed (and this is troubling me), I am starting to feel similar nerve pain in the heels of my feet.

I really do not know what to do. I have a standing desk at work and that resolves the problem of sitting down too much but now my heels are hurting I can't stand either!

I don't understand why I have these pressure type issues when I sit down. It indicates to me that maybe the DR has brushed a nerve and punctured my Dura at the same time. Is it possible I have some kind of minor leak?

I don't believe the leak can be detected via imaging. The MRI came up with nothing. The CT scans came up with nothing. Therefore what are the options??


Aaron.

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davedsel responded:
Hello, Aaron. Welcome.

The only advice I could give would be for you to continue to do research and see the right kind of spine specialists. There is a Tip at the top of this WebMD community that lists recommended steps for getting back pain diagnosed and treated. Within that thread are links to websites that have good information regarding spinal problems and solutions.

The best specialists are spinal orthopedic surgeons and spinal neurosurgeons. If you need a pain management specialist for treatment, then a physiatrist is best.

I pray you can get this resolved and find relief soon.
Click on my username or avatar picture to read my story.

Blessings,

-Dave
 
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AaronOz replied to davedsel's response:
Thank you so much for your much needed advice Dave. I will continue to research and let you know how it goes.

I think you are right. The spinal neurosurgeon seems to be the way to go I think.

I guess I feel that I have to live with this because I am so scared of further surgery (given my previous experiences).

Living with this for 2 years now and I have been forced to adapt.

Your story is inspiring. My problems seem insignificant in comparison.

Thanks again.

Aaron.
 
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1Npain responded:
My situation is only a little like yours and the only advice I can give is to seek another opinion and keep on if necessary. Someplace very reputable ex: University Hospital in Charlottesville would be my option because of my proximity to it and the knowledge I have of the hospital; but Duke, Cleveland Clinic, Mayo Clinic etc. would be good choices I don't know where you are located but a major institution as near as possible.


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