brain drain
01-22-2008, 05:40 PM
I am so happy I found this board and all of you. This has been a wealth of information. I have just recently been diagnosed with a spontaneous CSF leak. I am a 47 y.o. female who was in good health and very active previously to my leak. I started leaking in August of 2007. I spent 2 months trying every allergy medicine out there to relieve the symptoms before I called my doctor. Everyone told me that after we got a frost that the allergies would let up and I would be fine..well..didn’t happen. I made a dr. appointment mainly because I was concerned because only the right side of my nose leaked. I was suspicious about that although “Blues On Call” wasn’t. They said maybe my sinuses were just made that way. Then one day my son said to me – “Mom, you lay down an awful lot lately – why are you so tired?” I thought if a teenager notices something, there must be something wrong with me.
My dr. gave me more medicine and nasal sprays to try so there went another month or so of nothing working. He did sinus xrays, which were normal. He gave up and suggested I try an allergist. I had already given up and made an appointment with an ENT who also specialized in allergy testing…the smartest thing I could’ve done. He examined me in early November and the first thing he said to me was he suspected a CSF leak. He questioned me if I had head injuries or sinus surgery, both of which I hadn’t. My leak was clear but tasted salty – it leaks so much that you can’t help getting it in your mouth occasionally. Besides, when it isn’t leaking out my nose, it runs down the back of my throat. He asked if I had been having bad headaches to which I answered no because I am on migraine meds since I have had migraines for about 10 years now. I believe that medicine has now been a Godsend. I was so opposed to taking that years ago and wanted to quit taking it recently. I had migraines constantly when they first started and my dr. suggested taking Nortriptyline, an anti-depressant but also a chronic painkiller. It took a couple of months to work but taking it daily did help my headaches. From what I have read on here, I would suggest any of you suffering from the chronic pain to suggest the medicine to your doctor. I know that it has helped and is helping me. The ENT scheduled me for a CT scan and also allergy testing. My CT scan came back normal. I went ahead with the allergy testing that showed (after 60 punctures..ouch) that I was barely allergic to dust and molds. The dr. said there is no way that was causing my problems and he even called the dr. who read the CT scan to make sure nothing showed up. The dr. was more frustrated than me at that point. He asked me if I looked up anything about the CSF leak and I just shook my head yes. He could tell by the look on my face that what I learned had scared me. He told me he would rather rest on the side of caution and send me to a specialist in a bigger hospital and gave me a choice of which direction to go – both about an hour away from home.
I chose the teaching hospital/university only because I am familiar with the neurosurgeon on board there. I prefer him over anyone if things go that way after reading all that I did. I have since seen the specialists and had 2 more CT scans and 2 radionuclide cisternograms. The CT scan my local hospital did was useless to them. These doctors are very thorough – they did 2 days back to back of intense screenings. They examined me and I have nice straight sinuses so hopefully they find the leak and can reach it from there. They told me the migraines may be related to this and that as long as I am leaking so good that the risk of infection is lower. They wanted me to take a small cup home over the weekend to try and get them a sample of fluid to test….lol…I said, give me your cup now and give me ten minutes and you will have what you need. I think they were a little shocked. All I need to do is tilt my head and out it comes. They had more than enough to test within 15 minutes. They said they needed 1 ml. about 10 –20 drops; I gave them more than double that. It did test positive as spinal fluid. They only see about one case of a spontaneous leak per year but at least they see it. They do see the leaks from sinus surgeries and head injuries more often though. I was so silly trying to figure out what I could be allergic to..trying to figure out what my office at work had in common with my kitchen and bathroom at home….it was the activity and how I held my head. I notice lifting anything makes it much worse. I hate getting groceries. lifting the bags just aggravates it. I used to be very active and lifted weights (not heavy but just to keep in shape). I started feeling extremely tired this past spring/summer. I gave up lifting the weights in August when it just made my nose run too much and I got too tired. Walking does not bother me other than I do get more tired than I used to. Thank God I can still do that. It is my stress relief and the only exercise I ever seemed to be able to stay dedicated to. I don’t know how any of you that do physical labor for a living can function. I know I couldn’t do it. I am thankful I have a desk job.
I know I have written way too much here. I apologize but I did want to mention the few things like the pain medicine in case it would help someone else. I feel really bad for everyone that can’t seem to get enough drops for testing. Keep trying ..you know your body better than anyone. I have learned to trust my instincts…if your instincts tell you that it’s a leak, then it is more than likely a leak. . Btw – something I never read in all these posts – about these pledglets. Just an fyi – I had to keep mine in overnight to get the follow-up cisternogram. No one mentioned what they looked like. They are flat little squares about ½ the size of your little fingernail and they have these long strings attached. They put them in my sinuses and taped them to my face and left the strings hanging with little tags on them (about 6 in. of string).I looked like I had whiskers or dangling earrings hanging from my cheeks. They put 3 in each side. Wasn’t a fun adventure except the ENT that did the installation was really good looking – had to find something good in all of this. Then the radiologist that took them out was a sweetheart too…I wasn’t expecting nose junk (tryin’ to use a word that isn’t gross) to come out with them. I kinda wish I would’ve had a heads up on that. I don’t know what the future is holding in store for me…guess I will find out a little more next week but at least I don’t feel so alone now. Thank you all. I have been reading this board since November and I’m sure there are others like me who read but simply don’t post. I will keep in touch on here and will continue to read.
My dr. gave me more medicine and nasal sprays to try so there went another month or so of nothing working. He did sinus xrays, which were normal. He gave up and suggested I try an allergist. I had already given up and made an appointment with an ENT who also specialized in allergy testing…the smartest thing I could’ve done. He examined me in early November and the first thing he said to me was he suspected a CSF leak. He questioned me if I had head injuries or sinus surgery, both of which I hadn’t. My leak was clear but tasted salty – it leaks so much that you can’t help getting it in your mouth occasionally. Besides, when it isn’t leaking out my nose, it runs down the back of my throat. He asked if I had been having bad headaches to which I answered no because I am on migraine meds since I have had migraines for about 10 years now. I believe that medicine has now been a Godsend. I was so opposed to taking that years ago and wanted to quit taking it recently. I had migraines constantly when they first started and my dr. suggested taking Nortriptyline, an anti-depressant but also a chronic painkiller. It took a couple of months to work but taking it daily did help my headaches. From what I have read on here, I would suggest any of you suffering from the chronic pain to suggest the medicine to your doctor. I know that it has helped and is helping me. The ENT scheduled me for a CT scan and also allergy testing. My CT scan came back normal. I went ahead with the allergy testing that showed (after 60 punctures..ouch) that I was barely allergic to dust and molds. The dr. said there is no way that was causing my problems and he even called the dr. who read the CT scan to make sure nothing showed up. The dr. was more frustrated than me at that point. He asked me if I looked up anything about the CSF leak and I just shook my head yes. He could tell by the look on my face that what I learned had scared me. He told me he would rather rest on the side of caution and send me to a specialist in a bigger hospital and gave me a choice of which direction to go – both about an hour away from home.
I chose the teaching hospital/university only because I am familiar with the neurosurgeon on board there. I prefer him over anyone if things go that way after reading all that I did. I have since seen the specialists and had 2 more CT scans and 2 radionuclide cisternograms. The CT scan my local hospital did was useless to them. These doctors are very thorough – they did 2 days back to back of intense screenings. They examined me and I have nice straight sinuses so hopefully they find the leak and can reach it from there. They told me the migraines may be related to this and that as long as I am leaking so good that the risk of infection is lower. They wanted me to take a small cup home over the weekend to try and get them a sample of fluid to test….lol…I said, give me your cup now and give me ten minutes and you will have what you need. I think they were a little shocked. All I need to do is tilt my head and out it comes. They had more than enough to test within 15 minutes. They said they needed 1 ml. about 10 –20 drops; I gave them more than double that. It did test positive as spinal fluid. They only see about one case of a spontaneous leak per year but at least they see it. They do see the leaks from sinus surgeries and head injuries more often though. I was so silly trying to figure out what I could be allergic to..trying to figure out what my office at work had in common with my kitchen and bathroom at home….it was the activity and how I held my head. I notice lifting anything makes it much worse. I hate getting groceries. lifting the bags just aggravates it. I used to be very active and lifted weights (not heavy but just to keep in shape). I started feeling extremely tired this past spring/summer. I gave up lifting the weights in August when it just made my nose run too much and I got too tired. Walking does not bother me other than I do get more tired than I used to. Thank God I can still do that. It is my stress relief and the only exercise I ever seemed to be able to stay dedicated to. I don’t know how any of you that do physical labor for a living can function. I know I couldn’t do it. I am thankful I have a desk job.
I know I have written way too much here. I apologize but I did want to mention the few things like the pain medicine in case it would help someone else. I feel really bad for everyone that can’t seem to get enough drops for testing. Keep trying ..you know your body better than anyone. I have learned to trust my instincts…if your instincts tell you that it’s a leak, then it is more than likely a leak. . Btw – something I never read in all these posts – about these pledglets. Just an fyi – I had to keep mine in overnight to get the follow-up cisternogram. No one mentioned what they looked like. They are flat little squares about ½ the size of your little fingernail and they have these long strings attached. They put them in my sinuses and taped them to my face and left the strings hanging with little tags on them (about 6 in. of string).I looked like I had whiskers or dangling earrings hanging from my cheeks. They put 3 in each side. Wasn’t a fun adventure except the ENT that did the installation was really good looking – had to find something good in all of this. Then the radiologist that took them out was a sweetheart too…I wasn’t expecting nose junk (tryin’ to use a word that isn’t gross) to come out with them. I kinda wish I would’ve had a heads up on that. I don’t know what the future is holding in store for me…guess I will find out a little more next week but at least I don’t feel so alone now. Thank you all. I have been reading this board since November and I’m sure there are others like me who read but simply don’t post. I will keep in touch on here and will continue to read.