Anyone know anything about being pregnant with CSF leaks... I have had them in the past and they seemed to go away as long as I drink alot of fluid and caffiene. I'm scared they will come back with weight gain. I am 28 and started getting the headaches at 26.

For the past 5 years I have been seeing doctor after doctor including an ENT group for continued progressive hearing loss. I also had a few dizzy spells in July 2010. Every doctor kept telling me I had allergies and to take various allergy medications. When it got to the point of not being able to hear at all I went back to the ENT looking to get a hearing aide. He did a myringotomy and then when the fluid was found to be clear suspected a possible CSF leak. He sent me for a CT scan and then an MRI. It turned out that I had leaks on both sides of my skull. Refered me to an ENT surgeon who then pointed me to a Nerosurgeon. This was all within a weeks time. The rush was on because now I had two ear drums with CSF leaking out of them and a greater chance of meningitis. My Nerosurgeon (who by the way is one of the best doctors in the world as far as I am concerned), acted quickly to put in a VP shunt. Opening the shunt up allowed my ear drums to heal within a few days. Thinking that the leak is a sympton of something else (possible spontainious leak, possible intercrainal hypertention). After trying to adjust the VP shunt over the course of several weeks we finally found a sufficent setting but it was still not improving my hearing. Two weeks ago my doctor decided to repair the right side of my head. The leaking looked worse on the right side and apparently the right side of the brain has a little better chance of risk issues since the left side has more function. Well all I can say it is it has been two weeks. Had my stiches removed today. Feel pretty good. It looks like the right side and left side are improving with less leaking. My hearing has improved in both ears slightly. Right side has been repaired with a crainiotomy and fat layering. The left side seems to controlled by the shunt. Both my husband and I are hopeful that this may be the end of the 5 year ordeal. It is very frustrating if you do not have a surgeon who is willing to listen and care. I for one had the best around. I highly suggest Albany Medical Center in Albany NY. Their nero science department is OUTSTANDING. I can not say enough about the quick reponse and the level of care that they provided me. I am not sure what the future holds but I know who will be treating me for it. There is no other place I would ever go. Thank you Albany Med and Doctor D.

I had a spontaneous CSF leak 9 years ago. I was one of the lucky ones that got diagnosed right away but they were unsure how to treat it. Long story short, Get the MRI to confirm diagnosis. Skip the cisternagram, a useless test in most cases, never did show where my leak was and was VERY painful! Bed rest didn't work either and resulted in horrible ringing in my ears. Go for the blood patch. I needed two of them but it did the trick. It took a good 6 months to really feel myself again but I am fine now and never had another reoccurance.

Thx Sue... I have had the mri but no leak showed and the bed rest is not working for me either so I am afraid the dr might not do the blood patch since there is not obvious sign it is a leak other than every morning the pressure is less than the night before. He is still treating me for migraines... 2 diff meds. This is soooo frustrating, annoying and at times most painful. But thanks for giving me a silver lining. 6mths ~sighs~ but yet done! thx xDD

I saw this post, and I would really like any advice you can give on how to treat a spontaneous CSF leak. It took about 1.5 months to figure out what what going on with me, but a neurologist finally did an MRI of my spine and a spinal tap and found that I had a leak, but they couldn't see where it was. I have had two blood patches in 3 week, and although I feel a bit better, I'm not back to my old self yet. Is there anything else I can do or advise my doctor to do? He is having me take caffeine, drink lots of fluids, and rest. What are some other options. I am a 27 year old active female, and I really just want my life back.

I went through various doctors till I was dianosed and finally found one who would be willing to help me and not just tell me to take 2 asprin etc. You may need to seek out a doctor who has delt with this before. I have not had a blood patch but I heard you may need many of them before it actually works. I have had my leaks repaired but now I think I have another one. My nerosurgeon is planning on sending me for a nuclear cystigram which supposidly helps locate the leak as well as determing for sure you have one. Good luck.

Well thought I would throw out and update to everyone. Been suffering with low pressure headaches for several weeks now and slowly getting worse by the day. Also ringing in the ears and slow nose drip. Last Thursday got so bad went to the hosptial ER and you guessed it. Another leak has appeared and this one must be operated on to get my life back. I can not stay out of bed for more than 20 min at any time. Get my leak repaired this Wed and hopefully it will not start up again. this makes 4 surgeries on my head in less than a year.

this condition sucks.
Ill keep you posted.

Well not diagnosed but dr suspects I have a leak... He has me on bed rest, caffeine and steroids & lots of water but there are good days and bad days and seems the bad days are becoming more numerous. Still have to wait a few weeks till I find out what his next step is cuz he also has me on anti-seizure meds for migraines. No way I have a migraine. Tell me anyone you know that suffers migraines that majority of the time can feel better when laying down and gets worse while upright?

After some research I was anxious and excited to take that next step and be over this but now I after reading this forum I am scared!

venusny31 how many times you had leaks and what causes them or at least the first one?

Everything I read online said most epidural blood patches gave immediate relief but occasionally a few more would need to be administered. Someone show me there is a silver lining and something to look forward to please?

Also... I have recently last 5 days had diarrhea and the nausea has gotten alot worse that I have to take meds now, is that normal? I had read that nausea and vomiting are but hadn't heard about diarrhea... on the good side, since this started, Aug 2nd, I have lost 21lbs hehe... just 20 more to go to target weight hehe guess that is a silver lining!

glue patch? whats that... my mom just recently diagnosed with a leak... did three patchs... not working...did surgery ... she also has lupus, .... she wound up with infection in her spine,then they figured out the leak.... three patches and surgery later, shes worse i think.... and weve never been thru or heard of this before, now i look at all the posts, and other sites, and im amazed noone has come out with a good story saying their surgery or patch has healed and never have to go thru it again...seeems to be ongoing... scary...im sorry for you...just as sorry as i am for my own mom...

I read a question from someone about not hearing many stories about blood patches working, the truth of it is in most cases they do work.

The reason you don't hear about them on these forums is because after that horrible headache is gone you generally don't continue to research.

That said the people like myself that have had bad luck with blood patches either have other reasons why they don't work that they know about, or possibly have not yet figured out why it is not working. It seems that it is such a small percentage of people that fail overall, that not many people can find someone versed or even following this problem, not to mention that there are so many variables in each of those of use that have had them fail multiple times are far and wide.

If my case would allow me to continue having blood patches even though the procedure is quite painful while it is happening, I would do it again with hopes of relief.

Best of luck to all of you!