A CONSTANT fire in my head. Could it be a CSF Leak? HELP

[rnkgross]

May 2005 I had Rhinoplasty and a chin implant.(I know, chin implant sounds ridiculous but doc suggested it as he was wheeling me in to operate.) It seemed to go well.To my surprise, when the splint came off 2 weeks later there was a small bump on the left side of my nose that the doc said was soft tissue and cartilage that he had missed. A day or two later, I had a full blown infection in my face, neck, cheek and jaw line. (to summarize it ended up being a staph infection if my face for 8 weeks before the implant came out. The doc advised me that I got it out of his operating room.) Now almost 8 weeks since my inital surgery, the doc has decided to go back in to remove my infected chin implant and also fix the bump on my nose. He explained that it was so quick and simple that he could do it in the office chair and just numb the areas, but if I was squeamish we would have to pay for me to be put under. He advised my husband no need to take off another day it was going to be a really quick and simple procedure. So with that in mind my girlfriend took me down and I went under. 2 hours later I am being awakened in the recovery room. Upon awakening, All I could utter was that my head was killing me and the tip of my nose was on fire. Since that day, I have later learned from the doc that he cut out too much causing the left side of my nose to collapse and he spent the next 2 hours trying to rebuild my nose with cartilage and a product called Alloderm. (Cadaver tissue) Since awakening and EVERYDAY since my symptoms are the same and without reprieve. The core of my brain is on fire NOT A HEADACHE!!, The base of my skull, behind my eyes and in my temples all on fire. In the beginning I did have clear very thin fluid dripping. Now 2 years later I get very light dripping very intermittantly. Maybe once every three months. However, this fire NEVER quits. I sleep in a 90 degree position, I cannot bend over to pick up anything. My head errupts. I have tried every migraine and seizure medicine and it doesn't even touch it.  I have tremendous pressure in my head and neck. It hurts on some occasions to tough my scalp. I have a numb sensation in the bridge area of my nose. Two Neurologist have explained when you have significant trauma to the nose area, the 5th nerve then sends out the fire signal in your head. The seizure med was suppose to COOL the fire and doesn't. I am a mother of 4 young kids and swear, if I did have them and a loving husband, I'd either end all of this or at best be a drunk. I've had every pain med and some have dulled it for the 4-6 hours that the med works. NOTHING has helped this. I've been to a Chiropractor, massage, physical therapy. I can't sleep. My head seems to be worse at night, especially if I try to lay down, can't go flat. In the dentist chair my head errupts and I begin to look like I am ticking. I have had MRI and CT my brain is healthy I 'm told. however someone is missing something. My gut says I have or have had a CSF leak that has sealed itself. (I'm not sure if totally sealed because of intermittant drips.I know when it drips because it doesn't drip like a runny nose does down to your lip. This runs from the top of my nose and collects in the corner and has a foul odor. So when I smell it, i know it is there. Would a lumbar puncture possible show anything after 2 years? If the CSF had sealed itself, wouldn't this pain have subsided. I have memory,concentration and reading problems now. PLEASE any help, direction or suggestions are greatly appreciated.  

[Star_Booth]

If there is an issue with a CSF leak it would have to be severe to show up on a MRI or CAT scan my 6 Year old daughter has had 16 brain surgeries due to a birth defect called hydrocephalus which blocks the ventricles from draining CSF. Now if your headache gets better from sitting up when you go to bed (VIA RNKGross) I would not believe it would be a leak. When you sit at a 90 degree angle it makes the ventricles drain faster (CSF) and not slower but my best advise is to lay down and have it feeling at it's worst when you get a MRI or CAT scan maybe they can see an area lit up when you are having an attack and Good Luck to all of you

[selmaS]

it was suggested that u thought u might have a leak of spinal fluid...there is a test, called a flow study or CINE MRI this will determine if there is a blockage or leak........I do not know if that is all or part of ur problem....I just feel for the two of u and ur situation.

u may try TCM( TCM= traditional chinese medicine) they say if ur Qi(QI= chee) is in order u will feel better.

I pray u both find relief.

Godspeed
"selma"

[living_learning]

Some Terms I refer to below are:LYRICA, PAIN DOCTORS,BURNING LIKE FIRE ALL OVER,PARANEOPLASTIC SYNDROME,NUMBNESS,PINS AND NEEDLES TINGLING
You may think you've got nothing in common with me, but some of you definitely do, but for other reasons...so do read on after I tell you that, I've got late stage (4) Breast Cancer (bc), it's spread to my bones only...over a very long time to 'make it'..8 yrs.. After a no longer given protocol of an Autologus Stem Cell, 1yr later, I awoke burning all over, from within...it feels like one is burning up from within..it's horrible.  I also had diahrea (sp) and a brick on chest feeling....it was so bad, I was sent to the emergency room...again and again. I got no help and no answers. No doubted the symptoms, but the help was lacking in 2003.  Eventually a pain doc, gave me neurotin, but what did make it go away was getting back on Xeloda which is a cancer chemo drug.  I know this doesnt relate that much to some of you...but I think the result of all the many times I was given high dose chemo ...which is what the stem cell was for..so they could give mass am'ts to hopefully completely cure the cancer or keep it back for a very long time...which theyknew then was a crock..because in 1yr when it came back my oncologist who pushed me into the stem cell, said, oh yes a year was an average time to be cancer free....
Thus, it is the cure like so many cancer patients find out that is what kills them, rather than the disease...Thus, after wishing to DIE really want to just tear out my hair, I got better....All the chemos, have left me with much neuropathy to deal with ---hand and feet..it is very slow to improve.  The pins and needles and numbness do get better...I have, but now I fear that with chemo now I will have it return and I and family are of the belief that the nerve damage is so extensive...well, I am very fearful because there are very few chemo's that do not cause more of it....and so I have to hope I can manage with the effects, NOW that I am starting chemo, again.  
I wanted to explain after 2003 to present, I've experienced many doc's and their opinions and treatments for the attacks as I call them.  I took NEUROTIN and it just scratched the surface and made me very tired as I also, have pain pump for back severe pain caused by deterioration due to cancer.  
Went to experimental oncologist. He said attacks of burning etc were caused by something called PARANEOPLASTIC SYNDROME.  I know he has it at least partly right...He made more sense than all the rest.  The syndrome is brought on by chemos and not recognized by many oncologists because they don't wish to face what the chemo causes...when there is little they can do about it...thus it doesn't exist! then all is well to them...not to me though, I was in pure hell.  He was at OHSU, Ptld, Oregon. Dr. Pommier. He wasn't at least so far, actually able to give a treatment because his are extreme or can be, therefore he suggests only if it is last resort.
Eventually a pain doctor suggested LYRICA. WHAT A WONDER DRUG, IT SAVED MY LIFE...AND THAT SOUNDS DRAMATIC BUT IS NOT AN EXAGGERATION.  It is relatively new but I got on it right away (about 3yrs ago).  It is a godsend as people say. It makes gabapentin, neurotin...seem soo very lame.  And others with entirely different disease caused neuropathy, have been vastly helped by Lyrica.  I can't recommend it MORE...AND it has absolutely,no side effects..nothing ever so far anyway.  No sleepiness ...sleeping life away, no more..just to avoid pain....LYRICA, is just a true wonder drug, a life saver as far as I am concerned. Doc's are fed a lot of false info from drug reps I have seen 20/20 reports on neurotin how it is over prescribed(..when they should be giving Lyrica, now!)

Recently, I awoke with NUMBNESS in my chin..only on one side, that numbed the skin area and 3 teeth...it was fierce at first, and now by laying down more, I have gotten used to sleeping on my back with my head up quite a ways up..half sitting..and I have a an underbite that may be making things worse..but they seem to feel it could be the 5TH NERVE..the oncologist said to see the dentist, who said see a neurologist, but that the 5th nerve was involved..to cause that kind of numbness.  It is warm on the skin where it is numb. I can't help but worry that it is cancer related, somehow.  

All in all I want to sympathize with everyone's pain that got them here, and particularly those that have had severe, extreme: burning, shooting pains, constant kinds of pains where you feel you can't get away...so sorry for mkgross, that is just horrible.  I thought perhaps, my experience about Lyrica and the slow but steady improvement one can finally expect to happen from nerve damage is encouraging to look forward to.  If anyone has a question or a comment I would not mind responding at all. Or writing more to their email or them to mine.

Does my situation sound like, Trigeminal Neuralgia? (for those that have dealt with it)? Face pain is so horrible...I was amazed to read how people have had it,and little in the way of diagnosis and trtmt.

Mkgross, please accept my sympathy and not feel badly in any respect to having had the chin plastic surgery, luck of the draw, right, It should have been uneventful. I don't know about that plastic surgeon ...it may have been the staph infection being the whole thing, but it did seem like I kept saying to myself, this doc, didn't seem too good, or knowing what he was doing..sounded like he was covering his....a lot. Because after 8 long yrs, I have dealt with a lot of docs and there are many good ones, but they do make mistakes and there are those uncaring, under skilled, under qualified, etc.

Doc's depend on tests..and give you 20 minutes,  look at your name on a chart to call you SO nicely by name as they come thru the door. But many  wouldn't know you or your name if they met you on the st the next day....thus beware. They are given little time or take little time+ over use their authority so often, that this all results in little help for anyone who has ANYTHING out of the ordinary...am I right here? !  If it takes longer than 20 min., to diagnosis your in big trouble.  

everyone who has a hard to diagnosis situation will meet with much frustration because the way that medicine works  ...has a lot to do with making $$$ and little to do with,caring whether a patient is in pain. I CANNOT BELIEVE HOW FEW PATIENTS ARE TOLD TO SEE PAIN DOCTORS..usually a pain doctor is someone who was an anesthesiologist(sp) with further training...they are the BEST.  If you find a good one!  It is an up and coming field however, so there are some that are popping up for less than humane intentions.

Good luck and good wishes for all,
D.Cartier

[rnkgross]

I had a mylegram on teusday and am now suffering with a spinal headache for the last 4 days. Last night I was begging muy husband to just shoot me. With the mylegram they were looking for an active CSF leak. They did not find anything. I did want to share that I found a site called www.fpa-support.org. Under the advisory board I was able to find a doctor that is relativly near to me. i am going there on Aug. 3. I am praying that he will help me. Somewhere on that web site, I found a Trigeminal Neuralgia Q and A form and one of the questions asks if your have had facial trauma due to plastic surgery...therefore, I feel there is a link and perhaps Dr. Linskeys will be the first doctor to understand. If I do not get help here...I am preparing to go to the Mayo clinic....I CANNOT SPEND THE REST OF MY LIFE IN THIS PAIN!!!!
I sympathize with both of you and yes, my fire in my head is constant...no reprieve ever...however there are times, generally triggered by stress that the fire will errupt and the pressure increases an dthen I begin to voluntarily tick in an attempt to relieve the pressure. One thing I can certainly differentiate after having a myelogram and getting a spinal fluid headache it is completely different from the fire in my head........to call my pain a headache is an insult. Please read about TN on the web page above....Looking forward to your comments....

[alchris]

So so sorry what happened to both of you following surgery.  I understand the two of you completly though I did not have surgery but after a severe sinus infection I was left with a constant headache that never goes away nothing has helped.  I have ringing in the ears, my ears always ache and I have a specific pain on the right side of my head.  It is a strange pain/type pressure (it feels sore and aches and does have that burningin feeling) when this pressure builds up I feel a release of fluid draining into my ears and neck area.  I have been tested over and over again myself and am always told it is stress.  I try and tell the doctors that I know what   a normal head feels like and what it doesnt.  Still no answers but all of my symtoms never leave they are there 24 hours a day.  I know in my gut someone is missing something also.  This has been going on  for a few years already been visiting doctors non stop.  So I Know how frustrating it can be.  I do know one thing when I feel the draining in my head to my ears, my headache increases grealty and I have to lay down.  Does this happen to either of you, do you feel the fluid and does your headache increase.  I even had a lumbar puncture with a strange spot on the right side of the head which these doctors insist its an earring which I keep telling them I was not wearing any earrings when I went for the exam, they dont beleive me.  Just a note that might help for the Trigeminal Neuralgia I have read that gamma knife (nonsurgical approach to pain) can grealty help maybe it is worth looking into, I know I would but I still am awaiting a diagnosis after all this time myself.  

[katesmith]

Thank you for replying. I  have been diagnosed with Trigeminal Neuralgia/ Severe Neuropathic pain and the burning pain is absolutely intolerable. My face and scalp are constantly on fire, with severe pulling soreness on the front/top/sides/back of head. I cannot exercise whatsoever as this immediately makes the pain worse, and in any case , the pain always becomes absolutely intolerable when I am sitting still, never mind when I exercise. I wonder do you experience continual soreness on your scalp like a burning/stinging sensation, and it even hurts to shower. Also, my whole face and scalp are numb, and sometimes I can affect the feeling in my forehead/scalp by pressing the skin around my mouth and chin, like a pulling sensation, like elastics pulling. IN addition, I am now finding it intoleralle to lie in a bed in any position as the pain and pressure immediately get worse exacerabing my condition. The severe pain is now there 10 years and I don't know where to turn to.

Kate Smith

[rnkgross]

Ps. the only diagnosis I have been given is Trigeminal Neuralgia with Allodynia.

[rnkgross]

Kate thank you for sharing, this pain is indescribible. Being that you can relate, you know exactly what I mean. My fire BURNS from one place, it is constant and steady. It burns from the core of my brain and then has paths to behind my eyes, in my temples and at the base of my skull. If you've ever seen a diagram of inside the skull you can see where the core has nerve endings that run directly to these three places. I am not sure what triggers the fire to increase in its intesity but when it does, the pressure really builds in my head and my neck and shoulders get really tight. My eyes will also get sensitive to light and you cannot touch my scalp. It never a varies. It is always constant, the same way and in the same place. So what is your medical dianosis? Did you ever pursue the doctor?

[katesmith]

You would not believe it but following a Rhinoplasty operation 10 years ago I too have been left with many of the symptoms suffered by you. It is as if the whole head seizes up tight and burns severely with intractable pain, and believe me I have suffered most severely for 10 years. I WAS LEFT WITH CONSTANT PAIN IN MY NOSE, CHEEKS, FOREHEAD, TEMPLES, JAWS, SCALP, OCCIPITAL AREA AND NECK. All treatments so far have failed and of course the MRI Scan was reported normal. As well as the above my whole face, neck and scalp are continually numb with pins and needles from 10 years ago to this very day. Over the years the pain has gradually gotten worse to such a stage that if it continues getting worse, I think I may die. I Wonder if this has any relevance to you.
         Also I wonder this. Does the burning pain feel as if there are ten thousand burning elastics all over and deep within your head , neck and scalp, continually pulling, jerking, burning absolutely intractable to anything?
       I would be grateful for your response.

   Kate Smith
   New York.