Hello everyone,

I am so glad I found this thread today. It is really great to hear about other peoples' experiences with CSF Leak diagnosis/treatment. I'm sure you all will agree that dealing with a condition that seems to be poorly understood with unreliable treatment options is so frustrating and it is comforting to know there are others out there in the same position. While I am ultimately seeking advice, it also seems kind of therapeutic to write about my own experience on here.

I am a 23 year old student currently working on my Master's degree in Manchester, UK. I am American, from the Boston area, so as if this whole thing wasn't horrible enough, I'm also a long way from home. About five weeks ago, ten minute after waking up, I suddenly felt extremely unwell with a killer headache and nausea/vomiting upon exertion. I spent most of the day laying down, but went to A&E in the afternoon-I realized I had banged my head the day before and thought I might have had a concussion. The doctor dismissed me on the conclusion that I probably had a viral infection. I was in absolute agony for the week that followed-I spent all day in bed, tossing in turning because of this headache that could not relieved. I also lost my appetite and developed intense lower back pain. I returned to A&E hoping that I could have some tests done, but unsuccessfully left with only a proscription for Sumatriptan, migraine medication. That, of course, did nothing for me.

As the next week progressed, I felt generally better and was able to move from bedroom to living room and shower. At this point, I had convinced myself I had contracted viral meningitis and knew that I would have to wait for the virus to run its course. By the second week, I was feeling completely fine while I was laying in my house, so I made a few efforts to go outside, but it was clear that as long as I was on my feet or sitting without my head supported, I would have to tolerate the headache.

After numerous visits with the GP and quite literally begging for tests to be done to confirm my suspected viral meningitis, I had only received painkillers and more migraine medication. I felt like nobody was really listening to me...a persistent headache lasting four weeks really should be alarming! Luckily, my boyfriend's mother, who is a doctor, thought so. In attempt to gain her insight on the situation, I travelled to her house. It didn't take more than an hour for her to catch on to the distinct difference between me when I was standing up and when I was laying down and proposed it was Spontaneous Cerebralspinal Hypotension. Instead of waiting for the GP to refer me to the neurologist, she was able to contact a doctor nearby herself and I was admitted the next day.

Once admitted, an MRI scan confirmed the suspected diagnosis and the next day (on my 23rd birthday), I received the epidural blood patch using a bit more than 30 ml of blood. The worst part about the procedure for me was the build-up to having it done, I had no idea what was in store. I found that the procedure was not very painful, although the local anaesthesia stung mildly. I was on-edge the whole time because the doctor only stopped added blood once I said I could "feel pressure." The vagueness of the description left me very nervous about when to tell her I could feel an increase in pressure, but he seemed to understand everything I described. I suffered (expected) terrible back pain for about 6-7 hours after the procedure and was ordered on strict bed rest for 3-4 days.

While in the hospital, I went on short walks to assess my symptoms--this is the part I'm looking for responses on! I found that when I was on my feet, I felt throbbing and strange pressure changes in my head and and was wobbly on my feet. It is hard to describe, but it was certainly different from the pre-op headache. The same pressure feelings have occurred occasionally while I am laying down and sometimes sitting up relieves this.

Because I am not in pain when I'm walking, the neurologist agreed to discharge me from the hospital, but he didn't seem to like the sound of the pressure feelings I described. I am desperate to hear from other people what to expect post-blood patch. Is a feeling of pressure changes normal or does it mean it definitely hasn't worked and I should try the procedure again? My most pressing question is will I intuitively know when the blood patch has failed if it does? Like I said, I'm not in pain, but I don't feel back to normal. Any and all advice or shared previous experiences would be SO greatly appreciated if anyone has time to reply. My email is ******- if anyone would like to chat directly to me, I would be thrilled.

Thank you very much in advance for any insight. Wishing any fellow-leakers a speedy and long lasting recovery!!

Brianna

Simply put yes you will know because you will feel like you did when it first started.

Wish you the best.