Traumatic CSF Rhinorrhea

[Jaded1xx]

Hi all! It seems my CSF leak situation is a little different... I had sinus surgery in June of 2005, and 2 months later I got the worst headache I had ever had in my life - ended up in the ER. They treated me for a migraine, but nothing they gave me worked. I remember the exact day I got that headache, and it has been with me every day since.

I went back to the ENT who did the surgery and he just shrugged his shoulders and sent me to a Neurologist. After all the regular physical testing etc. and an MRI of my brain he too shrugged his shoulders. Told me I probably had migraines or rebound headaches. Although I had never had a migraine in my life (I'm 37) nor does anyone in my family. Not to mention I had NONE of the typical migraine symptoms - my pain didn't throb, no aura, no nausea and it was all over my head. Thus began my long and tedious search for someone to tell me WHY I had this horrible pain and how to get rid of it.

To make a long story short, what followed was a long list of different
diagnosis' (SP?) - migraine, tension headache, rebound headache, TMJ, Cervical Spondylosis, and worst of all Intracranial Hypertension. This came from a high pressure reading from a spinal tap (that gave me a mean spinal headache by the way). Come to find out the reading was incorrect! They found this out while I was hospitalized for reactive gastrits that came from the medication they gave me to bring down my spinal pressure! :mad: At that point there were so many doctors with their hands in the pot that they were starting to argue with each other...actually that was kind of amusing! :p

I had another lumbar puncture and that reading was LOW. I then demanded a nuclear medicine test because I felt that I possibly had a CSF leak caused by the sinus surgery. Well, sure enough the results came back positive for a leak. You would think that would be the end, and all would be well, right?

I was sent to an ENT who is supposed to be a GOD in his profession. He said he felt that the results were BORDERLINE, and that I probably didn't have a leak. But, just to appease me he agreed to do a fluorascein (sp?) test to make sure. Basically, they inject this fluorescent dye into your spinal fluid and see where it comes out in the sinuses. During the procedure he also decided to do some more sinus work, which really :mad: me off!!! Anyway, he didn't find the leak, but said if it's intermittent that could be the reason. SO, off to one of the best medical centers in the country that happened to be 300 miles away. I was so hopeful! These headaches were getting completely out of control, and I felt as if I was going to lose my mind if someone didn't do something SOON! Well, their expert opinion was "I don't know - some people just get headaches" and "if there's a leak and we can't find it then we can't fix it". Not one test - not so much as a blood test. That was a turning point for me. It was at that point that I felt hopeless. Thank God for my husband - he has really been my rock through all this.

Sorry for the LONG post, but I know it really helps me to read other people's stories. I have been so mistreated by doctors (one neurologist at a VERY prestigous hospital in Chicago actually told me to go see a phsychiatrist - felt my headaches were psychosamatic!!!!) I feel blown off most of the time, and I HATE the looks I get when I need to refill my Norco prescription (that doesn't really work anyway). I'm at the urgent care at least once a week, and I've been hospitalized three times since these headaches started. Also along with the headaches I have nausea, dizziness, blurred vision, black spots, numbness on the left side of my face (the side of the leak), watery stuff coming out of my nose, and restless leg syndrome. I KNOW I have a CSF leak, but it has been a living **** trying to get a proper diagnosis.

I have always been more of a "lurker" to these types of sites, but I really want to get my story out there, as well as talk to others who may be in the same position. I'm still able to work full time, but it is definitely a struggle. My family is suffering, and I have lost my life and my spark to this pain. Thanks for listening to my story! :o

[Concerned Gal]

Hi,

Welcome and thanks so much for your post. I'm with you, the only thing that seems to help some days is making contact with people in the same situation.

Well, you certainly have a story! Don't you just hate the fact that the doctors are so quick to write you off as an anxiety case. It took me 11 doctors, including 1 trip to the ER before anyone even thought it was more than a muscular related tension headache. Not only was I feeling really sick, but I was desparate for someone to listen to me. It wasn't as if I was at the Drs for every sniff and cough, I rarely went and they still thought I was making it sound worse than it was. I'm really concerned that I won't bother going to a Dr when I really need it in the future.

So where do you go from here? Your symptoms definitely sound like a csf leak, and considering you had sinus surgery 2 months prior. I know it took them a few tests to actually confirm I had the leak (radio-nuclei dye test showed nothing), Mri of spine (no abnormalities), then CT myelogram and all got to see an extensive leak in my thoracic spine, so big they couldn't pin point the exact spot. How annoyed was I! After three blood patches I'm finally enjoying a bit of relief, but I wouldn't say I'm fixed. Just taking it one day at a time.

I would think your Drs would be still looking for the leak, considering you had the surgery so close to the start of symptoms. And this has been going on for over a year. (Mine is 11 months). Have you tried caffeine to ease your symptoms? it has helped for me.

Anyway, keep in touch and all the best. My thoughts are with you.

[Baffled]

Hi!

I just wanted to say thank you for posting your story. Although our situations are different, the way we have been treated is quite similar. It is a bummer to hear about the number of people misdiagnosed who have csf leaks.

I am baffled with the way I have been treated. In July 2006, I had been into the ER 3 different times in one weekend. I explained to them that I have a high tollerance for pain. The last two times, I was vomiting, could not walk and could barely crawl to the bathroom. My neck was so sore. I could feel every muscle strand in my neck. My head hurt so bad that I would cry from time to time. I could not stand the skin I was in! I rated my pain as a 34 out of 10. The nurse laughed and told me, "Honey, you haven't had a real headache until you have had a spinal headache. You would know if you have one of those." I followed up with my nurse practitioner the following Monday who referred me to the neurologist. I was pretty much told each time I saw a doctor that it was a migraine and that I was fine despite the fact that their medications did nothing for me and I have no family history of headaches. (My nurse practioner is the only one who seemed to take me serious.) The neurologist's assistant even called me before the MRI results came back and told me that I was pampering myself and that I should sit up, decrease fluid, decrease caffenine, and decrease my muscle relaxant. Finally, the doctor's called and told me my MRI came back showing signs of menengitis. (Menengitis was ruled out during the last visit in the ER when I had a spinal tap and the doctor could not get any fluid without me bearing down.) She said it was no wonder why I felt crummy. I was told to be on bed rest for the next 3 days. I had already been on bedrest for 2 weeks.(I was able to speak with the neurologist who openly admitted that she has never seen anything like this in her 25 years of experience. I spoke to her on the telephone 2 no more than 3 times after my diagnosis.)

I have a csf leak on the front side of my spine between my thoracic 8 and 12 vertibraes. I have not had an accident or injury to explain this. After this diagnosis, I was allowed only to speak to the nurse. I ended up on bedrest for a total of 6 weeks solid. (Yuck!) I was not given access to speak to the doctors assistant or to the doctor. It was a terribly frustrating game of "telephone". The nurse would tell me one thing and then at the end of the day call me back and change her directions entirely! You see, the first time I met my doctor was after I had two blood patches. At that time, she put me on a low dose anti-depressant. She told me it was fast acting. She told me to call her in 3 weeks to let her know how things were working. Long story short, it didn't work. I requested to speak with her and couldn't. She would not allow me to schedule an appointment to see her for 6-8 weeks!

I ended up getting a third party involved to look at my sitation and to help me get a doctors appointment. Apparently, somewhere in my chart is some flag to doctors that I was seeking attention and/or narcotics. That explains the way I was treated before diagnosis. What is baffling is why they continued to treat me the same after diagnosis! I told the third party that I either needed an appointment with my neurologist sooner than she desired or an referral to a different location. She chose to send me on to a different facility. On the bright side, I am waiting for an appointment from the Mayo Clinic in Rochester MN.

I wish you the best and hope you keep in touch. I find the best thing to keep is my sense of humor. (Some days, it was pretty hard.)

[Concerned Gal]

Sorry for butting in, but I am absolutely appalled and disgusted after reading your post. Appalled that you would be treated in such an inhumane and inappropriate way. Least I could get through to speak to my doctor, for her to tell me she just didn't know what they could do to help me. I just can't even fathom it, I'm truly baffled (i can see where your username came from!).sorry i can't be more helpful other than to hang in there, and you aren't alone! Keep us updated.

P.s we are leaking from around the same spot - they think mine is T8ish.

[Jaded1xx]

I know. When I tell people about my experiences with doctors they can hardly believe it! One word of caution about Mayo Clinic - they treated me horribly there. The neurologist I saw could care less, and no one ran so much as a blood test. Told me they couldn't help me and sent me on my way. I could NOT believe it!!! I cried the whole way home to Chicago. I really thought that they would be the ones to "fix" me. But maybe you will get lucky with someone who will really try to help you. I'm told that CSF Rhinorrhea is very difficult to diagnose, especially since my leak is very small and intermittent. I'm seeing an ENT now that sees a break in my cribriform plate, but he won't operate until I can get the fluid from my nose tested for CSF. That is extremely difficult considering they need at least 1/2 a teaspoon to run the test! So, my next move is to find a neurologist that has a lot of experience with my type of leak - not an easy task since they are pretty rare.

I get so sick of being treated poorly by doctors who are supposed to help us. I have to see my GP tomorrow to refill my Norco, and I dread this appointment every time. I just know that one day he will refuse me pain medication, and if that happens I will not be able to work. God, I hate this!!!!
:mad:

I also have a had a spinal headache after lumbar puncture, and I KNOW the pain involved. I thought I was going to die! That pain is worse than childbirth I swear. My daily headache isn't as bad but close. I have it every minute of every day, and there are times I feel so hopeless.

Thank you so much for sharing your story - it's helps a lot to know that we are not alone! ;)

Take care and good luck!
Christy