has anyone had post surgery complications that cleared up on their own? my daughter had surgery on feb. 21st and is having low grade fevers, bad headches, a bulge at the incision site and vomiting. we were in the ER and the ns gave us the option of waiting and seeing if it self corrects or doing a second surgery and cleaning up the area, putting a lumbar drain in and possibly re patching. Wondering if there are any stories of going through this pain and having the condiion self correcting? How long did it take?
If anyone has had a second surgery like this what can we expect post op? what do you wish you knew then that you know now? Any advice would be appreciated.
Hello, I have had multiple leaks (still have one) and it is a confusing situation. It would be much harder to have it be a child, as an adult it has been difficult. Obviously I am not a Dr. but I can tell you a bit about what I have learned along my way and what I have done. I started to get symptoms back and they found the leak after surgery one, I scheduled a second surgery to repair it because I waited nearly a year for it to go away and the leak did not close. I do know early on they will try a blood patch for a leak, has this been done with your daughter? My second surgery to close the leak got crazy because my synthetic patch was stuck to my head and it turned out I get leaks because I have a csf issue so the second surgery turned into a third emergency three weeks later and this time they did put the drain in my back (lumbar drain). This was to keep the pressure down while things healed. I can tell you that the lumbar drain was not much fun! With my 3rd surgery they took out my synthetic patch and harvested my own tissue to use. I still have a psueodmeningocele (leak) after surgery three and just had a lumbar shunt put in to try and help with csf and see if the pseudo will go away if we decrease the pressure in my head. If she is leaking and the vomiting and headaches are low pressure headaches than she may just need a blood patch to try and fix the leak or have to try to close it again when the time is right. I had a fever that came and went for over a month after surgery 3, it was really crazy and horrible to have a fever that would not go away. I am so sorry your daughter is going through all of this. I do know the repair surgery is supposed to be easier, especially if you don't have more bone removal since that is where the strong pain comes from. If she were to have tissue harvested that could make it worse. My NS expected the corrective surgery to be much easier, he did not know I would have wacky complications. It was still a lot of neck and muscle pain to deal with. I know my NS usually waits a few months to see if the leak goes away and once it gets past a certain amount of time it is called a pseudomeningocele and not expected to go away on its own. I don't regret trying to fix the leak with the second surgery but it has not been easy! I still had things from the leak that made me miserable so I wanted to try and fix it, since I am still dealing with things I can say for sure yet if it has all been worth it but I sure hope so. It is a very long process for some. I hope her leak resolves on its own and she does not have to have an additional surgery. Was your emergency NS your regular NS? I would just make sure you have the best opinion/opinions!!!! Sorry if my e-mail is confusing, I have bad low pressure headaches from my shunt and don't always think straight right now :) -zygy
She has a synthtic patch and they didn't mention a blood patch I assumed they would have to replace it. I will have to ask about that. The er ns was her regular ns. If she has the surgery she will need a lumbar drain. How bad was that and how long did u have that in?
Sorry about the blood patch comment without explanation.... that is NOT a patch. They inject blood into the leak area I believe and it can help to close the leak if it is small enough. I have heard lots of people in here talk of blood patches but I did not have an NS that used that method. My first leak was not found for months, took quite a while for someone to believe me and my first NS moved across country and my NL did not believe in follow up MRI's. By the time I had a new NS it was too late for it to work I guess. So that is something that they try that is LESS invasive, no surgery! I had a synthetic patch first time, it ended up sticking to my cerebellum and doing some damage. Now I have the harvested tissue where they go up under the scalp where they are doing the surgery. It gave me a bit more head pain perhaps but I wish I had my own tissue the first time! My first NS would not listen to me when I wanted her to use my tissue. That is great your daughter was still seeing her regular NS, it gets too confusing with too many people! It is confusing anyway I suppose. The lumbar drain was uncomfortable. Since you already have the back of your head cut open it was just not fun to have the thing in your back too. Maybe it just grossed me out too much. It was a small tube and it was draining aside my bed. I had mine in about a week, they were hoping to keep the pressure down so that i would not get another leak. As the week went on my back would leak so my bed was wet and so uncomfortable. They did not listen that my back was leaking and I was just miserable. I was happy when they took it out and although it was not huge pain it felt SO STRANGE. I had also had lots of numbness in my feet while I had it in. I had lower back pain for a while when I went home. It is not the worst thing I have had done but I did not enjoy it much! It is a good way to keep the pressure down though to avoid the leak! It did not work for me, I have another leak from surgery three and now just got my shunt to keep the pressure lower. I think that means a longer stay in the hospital because they have to monitor the drain. I was only in the hospital two nights after my chiari decompression (surgery 1). The second surgery for the leak repair I was only in one night which was what they expected, the leak repair is supposed to be easier and faster. Then I had the complications and surgery three had me for over a week with the drain. I am keeping my fingers crossed that her leak closes and she does not have to deal with anything else. -zygy
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