Hi guys, Prepare for an essay!
I'm a university student and over my exams at the end of may I had some pain in my neck. This pain got increasingly worse and was relieved when I was lying down, I was then diagnosed by my doctor with a trapped nerve and sent home. The pain then got worse and felt like the base of my skull was swollen and my head was being tugged back everytime I sat/stood up, the pain had gotten so bad that anytime I was in a position other than horizontal I was vomiting, I was then referred to a headache specialist and put onto the highest dose of epilepsy tablets that were supposed to prevent migraines (which I was previously prone to), I also took very strong pain killers. I was then sent home, I was then in so much pain even lying that I was constantly vomiting. It got to the stage where I was vomiting nothing but blood, my friends said it looked like something out of a horror film! I visited the doctor many times after this and was rushed into resuss/major and A&E 4 times... each time they sent me home for bed rest and said I had a headache. I had been tested for Lymes disease, HIV and numerous blood tests but yet to have a single test on my head. I finally got sent for an Mri but this came back normal, it got to the stage where I couldn't even move an inch for pain and vomiting and I hadn't eaten or drank in days. My dad had had enough and said I had to go to the doctors again, I couldn't move so he had to dress me (a new low point for an independent 20 year old women) and I managed to get to the doctors vomiting around 10 times on the 5 minute car journey there. I had to see a temp doctor as my regular doctor was on holiday, she instantly rang the hospital and booked me a bed... something my own doctor should have done 4 months ago! Once I got to hospital I was put into infection control as I was still vomiting and they took blood samples for tests, I was the told again that I was going to be sent home with pain killers as it seemed I didn't have meningitis. My dad at this stage said he would not take me home and that I was staying until I was better (from an incredibly shy parent I could he ment business!), my blood results finally came back and showed that I was incredibly dehydrated and had liver abnormalities and so had to be kept in to be treated for this, phew. The next day I got to speak to my neurologist for the first time, he asked me a few questions and then exclaimed 'why are you just being treated here? You haven't been able to stand for almost 5 months? That isn't normal you should have been in here straight away! You won't be leaving until you are better.' I can't stress how amazing those 8 little words were to hear. 'You won't be leaving until you are better' Finally!!! I was then pumped full of fluids and the next day they performed a lumbar puncture, I was already feeling a little better by this point and could begin to move my head and had a belly full of food which makes everything seem better! Now, being needle phobic and already feeling like the world was going to end having a cannula I think it's fair to say the lumbar puncture was not my idea of fun, but if it would make me better I'd do anything! They caught a nerve on the way in and it HURT but after a few seconds it had stopped again, whilst she was tapping the fluid out I asked her, 'is the pressure high like you thought?' she replied, 'no... it's actually one of the lowest I've ever seen.' It then took about 15 minutes to get enough fluid for a sample as the pressure was so low. After looking at my results a few days later my neurologist then came to tell me that I had an incredibly low opening pressure and that I had blood in my CSF and he believed that I had a spontaneous CSF leak, finally a diagnosis! I was then kept in hospital with complete bed rest and being pumped full of fluids for a few days and was feeling like new again! Although I must admit after being moved from my own room in infection control to the Acute neurology ward and having the women next to me loudly and painfully die the first night whilst another patient ran around screaming, I couldn't wait to get home! A few days bed rest and I was able to stand again! I managed to get extraordinary university exams and passed them allowing me to return to uni and carry on as normal or so I thought... I made the first week of lectures and haven't been able to attend since. After days in bed without eating I realised it was time to return home so my father could look after me once again... I've had 2 more Mri's, with and without contrast both showing a healthy brain and nothing else. I am now awaiting a standing Mri, lumbar puncture and my first blood patch procedure which is taking incredibly long to arrange as my neurologist says he needs to find someone capable of doing it as he knows none of the neurologists do :/
Tbh I should of written on this page months ago for support as I have really struggled with accepting I have this condition, being an independent highly social 20 year old who's stuck in bed being nursed by her father for 6 months wasn't what I had planned for the year.
I'm really relying on this blood patch working but as not even my neurologist seems to know of my condition it's hard to feel confident about anything anymore... I just want to be me again.
I'm just looking for any advice or experiences people have had with anything similar and how they have coped.
Thank you.

Hello, and welcome to NeuroTalk. We're so glad you found us.

I haven't had experience with CSF leak, but I will post a link that may help you.

Spinal Disorders and Back Pain:

http://neurotalk.psychcentral.com/forum22.html

TinkerbellMorgan,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Welcome to NT!


You've sure come to the right place for great support and understanding. You'll find many caring people here.
Please make yourself right at home and post in any of the forums. This is a fun, caring, and down-to-earth place to be!


It's great to have you!


Caring,
Rae

Here is my experience. On Friday April 11, 2012, I woke up at 3am with a bad headache. I could barely move so I stayed home in bed. In the weeks that followed I had low-grade headaches nearly every day at school (I'm in college to become a respiratory therapist). I thought I was getting some kind of bug. The term ended May 3rd and my husband and I went out of town for a few days to relax by the pool. Instead of feeling better, my headaches got worse. When I would lay on my stomach, then sit up to turn over, I thought my head would explode. The pain was excrutiating.

On May 11th I saw a Dr who recommended I go to a hospital ER to get a CT and MRI. Instead, I saw a chiropractor and had a few therapeutic massages; he took 2 x-rays, nothing helped. On May 14th I saw an urgent care Dr who prescribed pain meds and muscle relaxers. On May 15th I went to the hospital ER for severe headache and nausea; they started an IV which made me feel better. The Dr told me to take 4 Advil 3x day and to get an MRI if my headaches were not gone in 3 days. On May 23rd I went to my eye Dr for a picture of my eye, there was no papilledema but she said my blood pressure was high. On May 24th I was in so much pain I had to leave class again, so I scheduled an appointment at an MRI clinic for 6:30 the next morning. They diagnosed me with intracranial hypotension and referred me to a neurosurgeon. I missed school all the next week and on May 31st I saw Dr Gore, a neurosurgeon at Providence St. Vincent Hospital in Portland, Oregon, who referred me to a radiologist for a CT myleogram. I continued trying to go attend school, but ended up being taken from school by ambulance to the ER due to severe headache, nausea and vomiting. On June 8th radiologist Dr Roll did my CT myeologram. He asked me to bear down during the CT so they could see where CSF was leaking out. I begged him "no," as that maneuver gave me an exploding headache that would last for at least half a day. He insisted I must bear down to determine where the leak was, so I did. They were elated to discover my spontaneous CSF leak was coming from the T1-T2 area. I had tremendous pain, nausea, vomiting, a weird salty metallic taste in my mouth and throat, fluid leaking out my nose and tinnitus.

On June 11th radiologist Dr Covarrubias did my first blood patch. He told me to take it easy the first day then return to my regular routine. I felt much better for about a week but by June 24th my headache, nausea and vomiting had returned. I could barely crawl to the bathroom over the course of 30 minutes. I begged my husband to call another ambulance, but he said they don't do anything to help me at the ER, so he helped me stay on schedule with the pain medication so I could at least sleep. On June 26th I had my second blood patch by Dr Covarrubias. This time he told me to lie absolutely flat for the next 7 days, which I did. The next day I was very sick with headache, nausea, neck pain and numb legs. By June 28th I was better and finally I was able to stop taking the pain and nausea medicine. I had to withdraw from school and take an additional 2 months off to recover. During that whole time my head felt like wood and I never left the house, but slowly I returned to normal. By the end of August I had returned to school and was resuming my normal activities. I was worried the second blood patch would fail too, but knock on wood, its been 6 months and I still feel completely normal! This is good news for me and for those of you who feel hopeless that you will have to suffer the rest of your life! With the right Drs, a spontaneous cerebral spinal leak can be diagnosed quickly and fixed! I wish you all the best, let me know if there is anything I can do. ~ Julie

Welcome to NT!

Thank you for sharing your experience! I'm sure others at the CSF Leak forum would love to know what you've shared.
Here's the link to that forum if you want to check it out:

http://neurotalk.psychcentral.com/forumdisplay.php?s=&daysprune=&f=78

Please stick around! This is a wonderful place of support and understanding.
It's great to have you!

Rae

Julie,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Great to hear you have recovered from your situation. Good luck with your schooling as well.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

I know it has been awhile since your post. But I am 25 and also suffered from a spontanous spinal fluid leak. It would be nice to be able to maybe email you and relate to each other, as this is such a rare thing. I am wondering how you are doing and what happened with your blood patch. I had a total of four blood patches to try to fix my leak, and eventually had to have spinal surgery in September of last year. I am still not normal. It's taking a long time to recover. I hope you're doing better!


Nicole