Hello Everyone: Sorry I haven't posted but since my MVD surgery on Dec. 14th....well things have not been good. More pain since the surgery (not TN Pain) than I could have imagined. I have a CSF leak. Any advice or if anyone else have experienced this I would like to know how long it's going to last or what they did to correct it. I have had one spinal tap where they drew some of the fluid off but no relief from that. They have talked about more spinal taps and possibly a shunt in my head. My computer broke so I can't get online often but I will check it as often as I can. Now have filed for disability and don't understand all that but I don't think it's going to be real good. Very tired all the time, headaches from hell, neck pain (they want me to wear a neck brace all the time too). Any advice would be appreciated. Wishing you all a pain free day and looking forward to one day having one too.
So sorry Cathy. I think the usual procedure for a CSF leak is to have surgery for them to go back in to find the leak & reseal it off. After the CSF leak is fixed, you might consider getting a second opinion from a top TN neurosurgeon about the MVD.
I spent 6 days on a lumbar drain due to a CSF leak that came out my left nostril. I would ask your surgeon if a lumbar drain would be a option before they do a shunt. A lumbar drain is a needle that is placed in the back and then left. it is attached to a little bag. It drains CSF fluid off and lowers the CSF pressure so the tear in the dura can scar over. My neurosurgeon told me if the lumbar drain did not work then he would place a shunt in my brain. It was a horrible 6 days as I could not lift my head off the pillow for 23 1/2 hours a day, but would have rather gone through that than shunt surgery. Was on enough narcotics for the spinal headache that I was to drugged to be totally bored, but I am ADHD, so having to be still so long was challenging. I thank God the lumbar drain did work and I did not need shunt surgery.
surgery is not always done. It depends on how bad the leak is. I had a CSF leak out my left nostril and was placed on a Lumbar drain as was at great risk for infection as a result of the leak. A lot of things are taken into consideration when it comes to how to repair a CSF leak. The lumbar drain was tough, but I am glad the surgeon went that route vice opening up my skull again. It was done with the understand if the drain failed, then he would go ahead with shunt surgery. Thankfully it worked.
So sorry for you, After my MVD I lost my hearing and balance. I was over retirement age but working, I finished work as there was no way I could go back. Some people never have any trouble, we are just the unlucky ones. Would advise you to take one day at a time, rest as much as possible. Don’t try to push yourself. I don’t know anything about the CSF leak, it is about the only thing I did not have. Neck and head pain I know all about. Look after yourself. Make sure the doctors do everything they can to help you. Love Margaret.
I had 3 CSF leaks after my MVD, and after a few tries at repair, I was put on a lumbar drain, exactly as Sarah describes above. I had to keep telling myself that the day-after-day flat-on-my-back ordeal was just a short time to endure in exchange for a pain-free future. The third leak was through a pinhole that developed in my ear canal, so more extensive repair surgery was done, and that finally sealed it. I am in agreement with Sarah, push for steroids and/or the lumbar drain before getting a shunt, becuase putting in a shunt is more brain surgery, with very real risks involved.
So, anyway, after the leaks were finally stopped, through spinal taps, we discovered that I had very high intercranial pressure when I was in pain. That eventually led to a permanent adjustable shunt.
If you are having headaches from hell, it may be due to a CSF leak - it is very easy to tell if the headaches are caused by the leak - they are very positional - meaning, if you lie down, and it goes away, and then comes back when you sit up, then it is caused by the leak. If that is the case, then, stay down for as long as you can - seriously - it is better for your brain if you do. The pain upon standing is your brain sagging down onto your brain-pan. Not good. At least that is what my loves-to-be-graphic NS told me.
If I can be of any help, please let me know. It is a true test of patience to get through complications like these.
I am on the final course of my disability application, so it looks like I am trending just a bit ahead of you on all of these things - I am happy to help however I can.
I'm so sorry you are having such pain and problems from your surgery. I didn't have a leak after my surgery in May, but I did feel AWFUL for a long, long time. I just went through a few weeks of no pain and I felt so good!!! But, i am feeling pain again tonight. I hope and pray you get relief soon. May God bless you and relieve you of your pain!
I had the CSF leak after my MVD and had to have surgery to "patch" the dura 10 days after the MVD. It was cake. My neuro used the same incision, the same hole in my skull and I was in and out of surgery within a couple of hours. I was out of bed the same day without any headaches. It was fabulous. Because of the risk of infection, I spent a couple of days on IV antibiotics, but compared to the initial MVD surgery, it was simply much easier. He used sterilized cow pericardium to patch the dura and I think it was the easiest way to handle it.
Good luck on finding the solution. But, don't be afraid if they suggest patching the dura. It seemed really easy to me compared to the first surgery.
Thanks Jackie: I do have a CSF leak. They are talking more spinal taps and possibly a shunt. I just dread more surgery. They are saying otherwise it will take 4 to 6 months to resolve on it’s on. The headaches are hell…worse than migranes. I go back on Wed. and we will discuss it and see if the leak has gone down. It puddles in my head at the bottom of my incision.
Jackie M said:
Hi,
I had the CSF leak after my MVD and had to have surgery to "patch" the dura 10 days after the MVD. It was cake. My neuro used the same incision, the same hole in my skull and I was in and out of surgery within a couple of hours. I was out of bed the same day without any headaches. It was fabulous. Because of the risk of infection, I spent a couple of days on IV antibiotics, but compared to the initial MVD surgery, it was simply much easier. He used sterilized cow pericardium to patch the dura and I think it was the easiest way to handle it.
Good luck on finding the solution. But, don't be afraid if they suggest patching the dura. It seemed really easy to me compared to the first surgery.
Thanks Jamie: praying for some relief soon. I hate this but I know there are others that have been in pain longer than I so I hate complaining. I hope all is doing well. I love having this support group. It’s nice to know others understand.
jamie leigh said:
Hi Cathy,
I'm so sorry you are having such pain and problems from your surgery. I didn't have a leak after my surgery in May, but I did feel AWFUL for a long, long time. I just went through a few weeks of no pain and I felt so good!!! But, i am feeling pain again tonight. I hope and pray you get relief soon. May God bless you and relieve you of your pain!
Ok, you all ready for a good laugh. Go ahead, in retrospect I think it is funny. I was on the toliet reaching down for the toliet tissue when my CSF leak started out my left nostril. It was all I had to get back to my bed and page the nurse the headache was sooo bad. Found the head of my bed, when but at a 30 degree angle was the only thing that make the headache go away.
Mine was at the incision site, too. One night, it soaked my pillow and I ended up in the ER because I didn't know what it was. I am glad I had the surgery to correct it. Besides my head feeling like a big balloon and the headache from it, I was dizzy, it was affecting my balance and it was affecting my vision and somehow, my handwriting!
The second surgery was so easy - I wouldn't be scared of it. They don't go anywhere close to where they went the first time. The CSF leak means the dura hasn't healed. That is the outermost covering of your brain, right under your skull. Besides opening your incision and the hole that's already there, that's all they have to do.
I can't imagine waiting 4 to 6 months for it to heal. I would have been so miserable, as you must be. Weigh your options carefully and don't let fear be your deciding factor. Best of luck, Cathy. Please keep us posted. I will be thinking of you as you go for your next appointment.
Remember that the longer you have the CSF leak, the longer you have a direct channel into your brain where an infection can start. I think if you have the option of fixing it right away, you should consider it.
I have to admit I am terrified of surgery again but with all this pain I really shouldn't be. I go back on Wed and see if he will put the shunt in. Do you have to stay overnight? Also the financial aspect is bad too. I am going broke now being on disability which hasn't kicked in and with all the bills I am going to have to pay. Thank you for the encouragement. Hope you're doing great.
Cathy
Jackie M said:
Cathy,
Mine was at the incision site, too. One night, it soaked my pillow and I ended up in the ER because I didn't know what it was. I am glad I had the surgery to correct it. Besides my head feeling like a big balloon and the headache from it, I was dizzy, it was affecting my balance and it was affecting my vision and somehow, my handwriting!
The second surgery was so easy - I wouldn't be scared of it. They don't go anywhere close to where they went the first time. The CSF leak means the dura hasn't healed. That is the outermost covering of your brain, right under your skull. Besides opening your incision and the hole that's already there, that's all they have to do.
I can't imagine waiting 4 to 6 months for it to heal. I would have been so miserable, as you must be. Weigh your options carefully and don't let fear be your deciding factor. Best of luck, Cathy. Please keep us posted. I will be thinking of you as you go for your next appointment.
Remember that the longer you have the CSF leak, the longer you have a direct channel into your brain where an infection can start. I think if you have the option of fixing it right away, you should consider it.
Are you sure he said "shunt"? That seems like three or four steps steps down the road - I cannot believe that this is the first recourse - it sould be more like watch and wait, then surgery site repair, then the lumbar drain, and then, after all of these have failed, they should approach the shunt, maybe. It's not making sense.
Could you do me a favor and find out exactly what the doctor called it? Could he have said "stint"? Becuase I think that they use this term for the lumbar drain.
Please keep us posted, I have been down this road, so I am watching out for you and what happens.
I am not positive. They said maybe a couple more drains from spinal taps and then possibly a shunt I thought but they could have said stint. my mind doesn’t work well with all the pain and drugs. I go back Wed and will check. Someone said if they do a lumbar drain that I will have to lay flat in the bed for 6 days. I can’t imagine doing that. I am just so sick of all the pain and nausea. I just want it over. I have to go to bed now. Please forgive if I am slow answering. My computer is in the shop and can only get on my friend’s when she brings it over. Thanks!
Lily said:
Hi Cathy,
Are you sure he said "shunt"? That seems like three or four steps steps down the road - I cannot believe that this is the first recourse - it sould be more like watch and wait, then surgery site repair, then the lumbar drain, and then, after all of these have failed, they should approach the shunt, maybe. It's not making sense.
Could you do me a favor and find out exactly what the doctor called it? Could he have said "stint"? Becuase I think that they use this term for the lumbar drain.
Please keep us posted, I have been down this road, so I am watching out for you and what happens.
Shunts require a life time of matenince. The biggest problem with them is they can become blocked and then infected requring they be removed and replaced. I am ADHD so believe me when I say I was concerned about boredom, but it was not all that bad. I was on a lot of narcotics to battle the spinal headache and was too “happy” to care about much.
Cathy Collum said:
I am not positive. They said maybe a couple more drains from spinal taps and then possibly a shunt I thought but they could have said stint. my mind doesn't work well with all the pain and drugs. I go back Wed and will check. Someone said if they do a lumbar drain that I will have to lay flat in the bed for 6 days. I can't imagine doing that. I am just so sick of all the pain and nausea. I just want it over. I have to go to bed now. Please forgive if I am slow answering. My computer is in the shop and can only get on my friend's when she brings it over. Thanks!
Lily said:
Hi Cathy,
Are you sure he said "shunt"? That seems like three or four steps steps down the road - I cannot believe that this is the first recourse - it sould be more like watch and wait, then surgery site repair, then the lumbar drain, and then, after all of these have failed, they should approach the shunt, maybe. It's not making sense.
Could you do me a favor and find out exactly what the doctor called it? Could he have said "stint"? Becuase I think that they use this term for the lumbar drain.
Please keep us posted, I have been down this road, so I am watching out for you and what happens.
yes lily would know she will take care you : ) Lily said:
Hi Cathy,
Are you sure he said "shunt"? That seems like three or four steps steps down the road - I cannot believe that this is the first recourse - it sould be more like watch and wait, then surgery site repair, then the lumbar drain, and then, after all of these have failed, they should approach the shunt, maybe. It's not making sense.
Could you do me a favor and find out exactly what the doctor called it? Could he have said "stint"? Becuase I think that they use this term for the lumbar drain.
Please keep us posted, I have been down this road, so I am watching out for you and what happens.