Update on me - 2nd CSF Leak, been in hospital 2+ weeks

Hey everyone, I hope ur doing better than me. Back on the 16th I ended up in the ER 3 days in a row - the 3rd time I had a seizure that brought me in and they finally admitted me! I had my 2nd csf leak repair on the following Monday and they did a ventriculostomy so I’ve been laying in bed with a catheter in my forehead. Then on Wednesday I started pouring csf down my back and I was sent back to the OR for my 3rd leak repair. They say I make too much csf too fast so they started draining more, more frequently to keep my pressure really low so I don’t break thru again.
So now I’m supposed to stay laying here at 15° until Thursday. As long as I don’t have any more leaks or complications. It’s been so long and boring. They have been good about keeping my pain in check so I’m in pretty good spirits.
I guess that’s all I have to say I don’t know if anyone else has experience with multiple csf leaks or the pain that goes along with having a leak, I mean I have no history or signs of seizures it was all from the leak. It was a miserable time, throwing up spinal fluid, not eating for nearly a week, having a spinal headache that not even morphine can touch. I can totall relate though and I’m def bored here in the hospital so ill be glad to answer questions about my experience.

Doodledee,

Aye Carumba! You have been through the ringer. Are you confident in your doctors? That makes a big difference. I can’t imagine what you have been through. I hope that this resolves soon. I hope the hospital is treating you well. The nurses are usually the best part of the experience. I am sending you prayers. I am so glad you updated us. I’ve been thinking about you.

Hugs, Wendy

Wendyanne, I was very frustrated with my NS but luckily I go to a neuroscience center and since my NS failed me he stepped down and I’m being taken care of by a more senior NS in the practice now who did both my recent leak repairs and I’m having more faith in my care. They offered to have me transported to a larger hospital in the area but larger doesnt mean better, I believe the hospital I’m in is one of the best in the area even my visitors are shocked at my large private rooms and superior treatment lol. As far as fixing me, I think it would be the same anywhere because I’m unusual - making all this csf and leaking so much!!

At least ill get thru sandy here and not have to worry about anything at home!

Poor thing! I hate hearing your are suffering so! I'm glad they've got your pain under control and I hope you get home soon and for good this time! Prayers!

doodledee i am so sorry you are going thru this. i am 5 weks postop was in twice so far for stitching of a leak and today i am in hospital to gave a lumbar drain put in for 3-4 days so i am right thereith you in thoughts and prayers. you have had a mucb rougher time than i have and i am inspired by your attitude that you may be able to help others through your experiences. praying for complete healjng for you.hugs june

I really hope I can inspire others because this could be a very discouraging time for anyone but I just might have more faith in my treatment then I think my own doctors do! I’m anxious to get out of the hospital, but who wouldn’t be?! Ill just be happy to get the catheter out of my forehead and be allowed to move in a different direction other than left or right!

Oh my gosh...stay strong!

Oh wow I am so sorry to hear you are having such a rough time. I have not had surgery yet but my symptoms pretty unbearable so hoping for something soon. Hope things starting going a little smoother for you and stay positive :0)

Sorry to hear of the issues. CSF leaks are difficult all around. My only suggestion is to make sure your surgeons are comfortable with Chiari and monitor your intracranial pressure(ICP) before pulling your external ventricular drain(EVD). There is a higher incidence of idiopathic intracranial hypertension in the Chiari patient population(in some instances, the Chiari is from high ICP). High ICP increases the risk of recurrent leak. So, after I place the drain in all my patients and drain them for a few days(just like you are going through). I always clamp them for a day or 2 and monitor ICP(usually needs to be done in ICU setting). Again, you(and your docs) want to minimize the risk of another leak. By monitoring ICP(usually for a day or 2), it gives all a little more comfort that there is no other diagnosis causing your leak. If you just pull the drain without clamping and monitoring, you hope you have sealed the leak but you aren't gathering all the data possible.

PS: I always like it when my patients tell me they are bored...a sure sign they are getting better.

How exciting to have a dr’s input! I do believe that is what my surgeon is going to do - clamp me off and let me move about before removing the ventric completely. He said this morning that he is takin it one day at a time and when he feels I’m ready he’ll move me on to the next step - tomorrow or Thursday hopefully! I think at this point I’m more nervous about getting out if bed and being able to walk on my “bed” legs since I’ve been in been for 2 weeks lol.