I had my 2nd MVD on April 19th. Successful so far, except for total numbness on left side but I don't care as long as pain stays away. 12 days post op I started leaking clear fluid from my incision.,,,,yep, CSF leak!!! They took me right back to surgery and went into the same spot they did the MVD and put a patch on the hole. 3 days later they were going to send me home but they check my incision & it was "mushy" a CT scan revealed that it was better but still leaking a little. They took me to radiology to put a spinal drain in but I have spinal stenosis and they couldn't get the needle far enough in without hitting my nerves...hurt like HELL!!! So, they drained a little fluid but radiologist said it probably wouldn't be enough. My dr went out of town on Friday and won't be back until Monday...tomorrow. I've been in the hospital since Tuesday, May 1st. My nurses tell me my incision is still very mushy....looks like there is still fluid under the scar. If I can't get a drain tube in spine....and they've already tried to patch it & it didn't work...what are my other options!!!! I very scared & concerned! I've alreay have two brain surgeries in less than two weeks. Please let me know what you guys think.
Tammy i dont know what to say or advise as I dont know enough. Please re post this on the main message board where others can see it better. x
By now you should have been seen by a medical resident and advised on what can be done to stop the CSF leak. There is simply no excuse for your having to wait 48 hours over a weekend for interventional care of this type. If you aren't up to the task, then ask a family member to go find the Chief Resident of the facility where you are, and raise merry hell until they allocate a physician to evaluate you and get the CSF leak under control.
Regards, Red
Thank you all for your comments! What a nightmare rollercoaster this has been! Well Red, they finally did have a "Dr" come by to see me and he said he thought I was stable enough to wait for my Dr to get back on Monday. Guess what....my Dr came back on Monday but I still didn't to see him...he was doing procedures, so he had 5 residents come evaluate me and report to him. They all decided that I could "wait" it out for another week in the hospital or come home and be very careful to see if the small hole in my dura will heal up. They think it's a small hole but they are positive it's still leaking but it's not coming out my incision. I'm getting several spinal headaches a day but as soon as I feel pressure I lay day and it helps. I'm so nervous, I live about 70 miles from the hospital in Dallas and they told me to get back there ASAP if it starts to leak out of my incision. They decided to leave my stitches in for another week. It's still squishy but hasn't changed much in the past few days. I elected to come home...as much as I LOVE the hospital and all the nurses & techs(we are all friends now...LOL), I choose to go home. I'm under STRICK instructions to do NOTHING but eat, sleep, sit, and walk(a little). So frustrating, when after my MVD recovery, I was at the point that I was able to start doing a few minor things around the house like loading the dishwasher, etc. This CSF leak and second surgery has really hit me hard....I usually bounce right back from illness or surgeries but wow I'm so exhausted just walking a small distance! Guess I just need more time to get over this....I just hope & pray the dura closes and I don't leak anymore....this is quite a scary event. I feel like I have a timebomb in my head....waiting to explode(leak)!!!
Best wishes to you Tammy. I hope it heals for you soon. Min
On balance, I'd say that I have rather strong reservations about any patient with a CSF leak being discharged to a home environment 70 miles away from the hospital and doctors whose errors created the problem in the first place. That being said, please make sure that someone in your household is aware of how you are doing from hour to hour, and has all the right phone numbers to involve local emergency help if there is need. Some of these things do taper off and heal themselves in a few days. And some of them don't. The site has a former moderator who has been through quite an awful time with a CSF leak, and I guess that's made an impression on all of us who provide support here. We can hope that you do well, but if you have evidence of a renewed leak through the surgical wound, then get to a hospital ER ASAP.
Regards, Red
love the encouragement and hearing that others have gone through what I'm going through. Went back to surgeon today with another scare. I woke up this morning with a strange noise in my ear on the TN/surgeries side. It sounds like chips being crunched everytime I move my jaw or touch my ear, and feels like it's FULL of fluid. Dr's office said surgeon told me to come bag packed to have another surgery! But when I got there he felt that it "could" be a CSF leak in my ear but could be a normal event that sometimes happens after MVD surgeries. He took my sutures out and said the incision looked great...and no leaks!!! I asked him about the pressure and headaches I keep having....he said those greatly concerned him b/c it could mean that I have low spinal pressure, which is why my headaches get better when I lay down. He told me I'm at an extreme high risk for another leak....then he said in fact, he thinks I am probably still leaking, but it's more like a trickle, and he thinks the blood patch he put in my dura will seal up. So....the plan is to keep taking it easy and not doing anything that will cause a strain or pressure on my head. I truly feel like my head is a time bomb ready to explode with leaking CSF at any moment! Pretty emotional day, I cried a lot on the way to Dallas at the thought of having a third crainiotomy in less than a month. Best news of all is that my TN pain is still gone!!!!!!!
Patience and tolerance is something we all strive for in our lives, but you have every right to raise the roof with your Dr and the hospital immedately… Bless you!