[lisalailey]

I have been suffering with a spinal leak (headaches everyday for about a year and half. Had 1 blood patch done which has not worked, trying to keep my headaches under control but finding it hard with 2 children & work. If anyone has any info on low pressure headaches or help with pain releif that would be good, regularly taking 6-8 paracetamol a day which is now taking its toll on my stomach, possibly going for another blood patch soon but very nervous, I have a vascular malformation which affects the right side of my back, had bit of a nasty operation a couple of years ago on this.
again this is something which few doctors seem to know much about. Any help or advise would be great.

[AfterMyNap]

Hi, Lisa! Welcome to NeuroTalk!

I'm so sorry for your suffering. Here are a couple of forums where you may find some good guidance. We also have a search engine located in the toolbar near the top of every page.

I hope you'll find some answers soon and please feel free to join in anywhere.


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

Headache:
http://neurotalk.psychcentral.com/forum32.html

[Kitty]

Hi Lisa and welcome to NeuroTalk!

I'm so sorry about all the pain you've been suffering with...hopefully this site will provide you with some answers, friendship and support. So glad you decided to join us!!

[weegot5kiz]

Welcome Lisa to Neuro Talk, sorry about the spinal issues, follow that link AMN posted, hopefully you will find some answers, and you can always post a question or two or three..........Again welcome to NT

[Koala77]

Hello Lisa and welcome to NeuroTalk from me as well.

I truly feel for you with the condition that you have, and I can just imagine the headaches that you've had. I do hope that you soon find relief but in the meantime, feel free to join in here on NeuroTalk. It's such a pleasure to have you with us.

[braingonebad]

Originally Posted by lisalailey

I have been suffering with a spinal leak (headaches everyday for about a year and half. Had 1 blood patch done which has not worked, trying to keep my headaches under control but finding it hard with 2 children & work. If anyone has any info on low pressure headaches or help with pain releif that would be good, regularly taking 6-8 paracetamol a day which is now taking its toll on my stomach, possibly going for another blood patch soon but very nervous, I have a vascular malformation which affects the right side of my back, had bit of a nasty operation a couple of years ago on this.
again this is something which few doctors seem to know much about. Any help or advise would be great.

Welcome to NT!

It seems like CSF leaks are rare and very few docs really know how to deal with them. They have treated yours the same as if it were due to a lumbar puncture -is that how it happened? If not, they probably need to figure out where the leak is in order to patch it.

In that case if I were you, I'd skip the general neuros and get to a major clinic - like Mayo. I'd want all the experts available looking into this to get it resolved asap. You've suffered enough, and this needs to be fixed.

Meanwhile, what I was told after the lumbar puncture may help you with your low CSF. Drink plenty of caffiene and water, to help replace the spinal fluid. Lay down flat (I know you can't do that all day, but as much as possible). Avoid lifting and straining.

I'd also avoid aspirin and products that contain it - that can keep your body from clotting and closing that leak.

Good luck. I really hope you get some relief soon.

[ali12]

Hello and Welcome to Neurotalk - you will meet many great and supportive people here!!

I am so sorry for everything that you have and are currently going through

If I can help you in any way, please just let me know - I am more than happy to help you in any way I possibly can!

Thanks and I'm looking forward to seeing you around the forum soon!!

[lisalailey]

My leak is spontaneous, but had an operation on my back a couple of years ago to remove part of a venous malformation on the right side of my back. unfortunately it did not go too well and they ended up removing quite a large area of my erector spinae muscle and latimus dorsi, nice! I also ended up having about 22pts of blood transfused. Its left me less able than I was before the operation and then I developed this headache about a year later which im sure the op has somthing to do with it. I live in the south west of England which is good that I dont get the hurrendous medical bills but the knowledge about venous malformations & spinal leaks because it is so rare is not that good. I have 2 young children so taking it easy is quite hard to do. I try to minimize carrying etc but as I do not drive I find often I have to carry shopping which really agrivates the headaches. Quite frustrating that alot of buy one get one free offers I have to leave the free one because I cannot carry it!!! but its really nice to able to talk to others about this I have a partner who works really hard, but I think he's simply had enough of me always being ill, he's reach the point he does not want to
know anymore. Hey but at least Ive got you guys now