I appreciate all of your comments and your suggestions of asking about CSF leaks BEFORE hand... I have had non-stop pain and issues of BAD flare ups for the past few months. My neuro, back in May, said he wanted to suggest a neurosurgeon - I promptly I wasn't ready for that yet...I didn't feel it was to THAT point. I wasn't feeling THAT much pain for long periods of time back then.
I don't mind telling you, this SCARES ME TO DEATH! I am contemplating looking into this; as I just don't want to go ANY OTHER ROUTE that I will still have to do a MVD at some point in the future! BUT... You guys are my hero's that you have gone through this and can 'tell the tale'!
Any other 'tid bits' of issues to bring up with doc's before going through something like this are truly appreciated!
I pray for you for healing and strength to deal with all of it! ((hugs))
Consulting with a neurosurgeon does not mean you have to have surgery but at least it's one more person to talk to about the condition and see what alternatives he/she has to offer. I think the more people you discuss it with the better whether you like what they say or not. Just keep an open mind and listen to their thoughts. I chose to have MVD surgery the first time because I hate being on medication. I hate it even more now. I guess that's why somehow I am going to make it through the 4th surgery on October 10th. I can't remember if I told everyone or not but they have put the surgery off until Oct. 10th due to a sinus infection. Praying that you will find the right doctor or surgeon to help you. It's just a personal decision all the way and what works for some doesn't work for others. I think just trying to take it all one day at a time is the best we can hope for.
I had a leak and they went back into repair it. thank god, because the headaches from the leak were completely off the charts pain-wise. Came out great but they could not get control of my pain for a while in the hospital. ended up leaving with 12 hr oxycontin plus percacet for break thru and valium for muscle spasms. I was sure Id end up addicted but I did not!
I am so glad they went back in, btw after the MVD I lost my hearing in that ear but after the repair my hearing cleared up to normal.
For month or two, I had drastic hearing loss on the side where I was operated on for my MVD. It was one of the first things I mentioned to the surgeon. The surgeon told me that it was normal and not to worry about it. I wish the surgeon could have told me that before the operation. I also had numbness in my tongue on the side the operation was on and had trouble moving it. I also lost most of my sense of taste. The surgeon acted as if I was bothering him with these little details, as if I should have known it was a part of the operation. The surgeon and hospital staff had horrible bedside communication skills. These things did clear up a couple of months after the CSF operation.
I had some of the bad headaches at first but now very rarely. The main issue with my csf leak is the big bulge in the back of my head. Sometimes it gets larger and it get hard and tight. Then it will get soft and mushy. It causes pain in my neck and I can only sleep on my right side. I have been sleeping on my right side since I left the hospital on 12/16/10 after my first MVD. I have CSF that leaks out of my nose almost every morning. It's not a lot of it and the funny thing is it always comes out of my right nostril and the big bulge and incision where the surgeries were are on the left which means the leak is on the left side of my brain. That one I truly don't understand.
Getting a little nervous about the surgery next week but it's just something I have to do. I need to get this repaired. I am really praying this is the last time. I am sick of all of this but I feel bad even saying that because I have not experienced as much pain and for as long as some have. I do have an excellent surgeon that I trust and the other times I have been to MUSC the staff treats me great so hopefully this time will be the same. My biggest fear is when they remove the lumbar drain. The last time I screamed so loud they could hear me down the hall. One of my nurses was down the hall and almost started crying when she heard me. It was horrific and I don't look forward to that again.
Be strong everyone! Wishing you all a pain free day (even though I know for some that just one hour without pain would be a blessing)!
I have a question about the lumbar drain. I've only had lumbar punctures and am wondering what I'm in for when they put the drain in. How does it go in and then out? Is it like a lumbar puncture except they thread in a catheter? The surgeon is putting it in right before surgery and keeping it in for 2-3 days.
Well they put mine in while I was out of it (I assume right after the surgery was done). I woke up with it. But when they took it out, well I don't want to scare you but it wasn't fun. I had really bad back spasms for awhile afterwards. It's my understanding that the catheter is put into your spinal column and then they put in a couple of stitches to hold it still. You aren't allowed to move around much while it is in and they checked mine constantly. They don't want you to drain to fast or too slow or it will cause the CSF headache. The doctor that took it out was not my neurosurgeon and had no bedside manner. No one was with me when he removed it either. I have begged my surgeon to be the one to take it out because it's painful. Also I will make darn sure that I have some pain medicine before they remove it too. Of course it only last for a minute but still it was painful so I am not going to sugar coat it and tell you different. I am hoping it will be easier this time.
Please, don't sugar coat it. I need to know the truth.
I'll make sure to take my pain medicine before they take it out too! I'm kinda worried 'cause I know I have scar tissue back there from the taps I've had done before. They had a real hard time getting in the last 2 times they did it last year and I'm worried it will be difficult this time. Especially if they have stick a catheter in. Ugh. But now that you mention it, I wonder if he'll put the drain in after they put me to sleep. That would be great! All he said was he would put it in before surgery, so who knows.
Surgery is scheduled for November 5. I wish it were sooner. I just want to get it over with.
Hopefully you are pain free and not leaking anymore by then! yay! How long after surgery on Oct 10th will it take for them to know if your leak(s) have been fixed?
My surgeon says I should be fine to go back to work in 2 weeks. However the county doctor will not allow me to go back for at least another week. I would talk to your doctor and tell him to please put it in while you are under. There is no reason to put you through that pain if it's not necessary. At least when they take it out it's a quick thing that is very painful and then it's just residual pain and back spasms. They gave me muscle relaxers that helped though. If it cures the leak I'll be happy. Wish I could figure out how to post a pic here of my bulge.
2nd mvd and dura repair to stop csf leak done Oct. 10th. Got out of the hospital today. Not as bad as 1st surgery.but no cake walk either. Not sure if repairing the csf leak was successful
On a lumbar drain for 5 days. I think he just, stopped it today because I was getting so antsy lying there. Unfortunately tonight it started leaking out of my back after being up out of the bed for a few hours. Surgeon found many other places that needed to be wrapped which he did. I will post when I find out if it was all successful. For now I will wait and take the meds. I really want to get off these meds.
I have no idea what is going in with me. This last surgery has not been a pleasant recovery but I finally have found the reason for the panic attacks. I am sure it is the prednisone. Tomorrow I get my stitches out and can talk to the doctor about all the pain I am experiencing. It’s worse now than it’s ever been but not long lasting. Hoping with time it all calms down because I just don’t feel like I can do or take anymore. I hope the dura is repaired. I hope all this other stuff is just a result of him wrapping more of the nerve (which is what he said he did). I need lots of answers because I have lots if questions. I will post when I get them and hopefully that will be tomorrow.
Cathy, you might have posted this somewhere else, so sorry if I am asking something you already mentioned, but: how are you doing? Did the leak finally stopped? I'm so sorry about the panic attacks with the Prednisone. Prednisone has made me completely paranoid before. They gave it to me while in the hospital after my MVD for my CSF leak from the lumbar drain and they had to give me Ativan as well. I ended up in the hospital 7 days due to it. I couldn't move w/o throwing up.
BTW: I had a pain medicine pump and I made sure I pressed it before they took out the lumbar drain. (They put it in while I was under.) Taking it out was not what hurt me. What hurt was the stitch they put in afterwards. The nurse practitioner that was doing it said to me: "I'm not going to numb you up because that's going to take too long. So just hold your breath and stay still while I put in a stitch." What?! The nurse that was is the room with me looked like she was going to faint. Shegave me the heads up that it was going in, not the NP.
Now I'm dealing with a CSF leak in my ear. I don't think it's that bad because my head doesn't hurt. But I have to stay lying down, because I don't feel good sitting up. I get very very dizzy.
I was thinking about you while all this has been going on. I really hope you are better.
Hey: Thanks for thinking about me. I had an MRI today and it looks like the leak has stopped and hopefully it will stay that way. It only took 3 surgeries but I am so happy to say that's it good for now. No big lump in the back of my head. However I have been biting my tongue almost every day. Yesterday my teeth went all the way through it. OMG it is sore and I wish I could stop. The doctor said that when the trigeminal nerve completely heals then it will probably stop. He also said I could start weaning off the Lyrica. I am happy about that but very scared also. I will do it slowly. Just praying it is all done and stays good for the rest of my life or at least for 10 years or so. So what are they doing for your leak? When I had the first lumbar drain removed the guy took the stitch out, took the drain out and put in another stitch with NO pain meds and no numbing. I screamed bloody murder. There was a nurse in the hall that heard me and it made her cry. The last lumbar drain the doctor didn't remove the stitch or put in another. He just took it out. They had given me a little pain medicine right before but it wasn't anything near enough to help the pain. I screamed and said some very ugly words to the doctor, my boyfriend and everyone else in the room. I was not nice. Never again!!! Next time I will self-medicate if I have to.
Keep me updated on how you do. I am so happy to be well right now. I pray that everyone else is doing good. I hate this condition. I hate that others are still suffering. I have to highly recommend Dr. Sunil Patel at Medical University of South Carolina. He is in the top 1% of the nation for neurosurgeons. A really good doctor with good bedside manner except for removing lumbar drains.
Hi Cathy, I hope this letter finds you in good health. How are you doing? I am scheduled to have MVD at MUSC April 1. Dr.Patel will be performing surgery. Thanks for your recomendation, with all you have been through. Thanks for sharing your story, Kimburlee
Cathy Collum said:
Hey: Thanks for thinking about me. I had an MRI today and it looks like the leak has stopped and hopefully it will stay that way. It only took 3 surgeries but I am so happy to say that's it good for now. No big lump in the back of my head. However I have been biting my tongue almost every day. Yesterday my teeth went all the way through it. OMG it is sore and I wish I could stop. The doctor said that when the trigeminal nerve completely heals then it will probably stop. He also said I could start weaning off the Lyrica. I am happy about that but very scared also. I will do it slowly. Just praying it is all done and stays good for the rest of my life or at least for 10 years or so. So what are they doing for your leak? When I had the first lumbar drain removed the guy took the stitch out, took the drain out and put in another stitch with NO pain meds and no numbing. I screamed bloody murder. There was a nurse in the hall that heard me and it made her cry. The last lumbar drain the doctor didn't remove the stitch or put in another. He just took it out. They had given me a little pain medicine right before but it wasn't anything near enough to help the pain. I screamed and said some very ugly words to the doctor, my boyfriend and everyone else in the room. I was not nice. Never again!!! Next time I will self-medicate if I have to.
Keep me updated on how you do. I am so happy to be well right now. I pray that everyone else is doing good. I hate this condition. I hate that others are still suffering. I have to highly recommend Dr. Sunil Patel at Medical University of South Carolina. He is in the top 1% of the nation for neurosurgeons. A really good doctor with good bedside manner except for removing lumbar drains.
Kim: I am so happy you went with Dr. Patel. He is really awesome. The surgeries he has performed for me were a cake walk compared to my first. I am not saying you will not have pain. You won't remember the first day at all but then after that the pain was definitely manageable. I never got sick to my stomach and I had excellent care at MUSC. If you need anything while you are there you can call me. Is there a way I can privately send you my cell #? Praying that all goes well for you and that you find immediate relief. Do know that when they mess with the nerves in your brain that sometimes you will have some strange feelings as the nerves heal (numbness, tingling, little shooting pains).
Kim: Who did your first surgery and do you live in this area?
Cathy Collum said:
Kim: I am so happy you went with Dr. Patel. He is really awesome. The surgeries he has performed for me were a cake walk compared to my first. I am not saying you will not have pain. You won't remember the first day at all but then after that the pain was definitely manageable. I never got sick to my stomach and I had excellent care at MUSC. If you need anything while you are there you can call me. Is there a way I can privately send you my cell #? Praying that all goes well for you and that you find immediate relief. Do know that when they mess with the nerves in your brain that sometimes you will have some strange feelings as the nerves heal (numbness, tingling, little shooting pains).
I had my surgery a little more than one year ago (13 months before you). I too had a CSF leak after microvascular decompression surgery and read all the suggestions on this site. But my doctor said that if I took it easy and took a strong "blood pressure" pill, the decreased pressure and lack of excess activity would allow the CSF leak to heal itself
. I took diamox for 4 months while it leaked, and low and behold, if finally sealed. From all I had read, this was the best result possible.
Regards, Judi Weissinger
Cathy Collum said:
Kim: I am so happy you went with Dr. Patel. He is really awesome. The surgeries he has performed for me were a cake walk compared to my first. I am not saying you will not have pain. You won't remember the first day at all but then after that the pain was definitely manageable. I never got sick to my stomach and I had excellent care at MUSC. If you need anything while you are there you can call me. Is there a way I can privately send you my cell #? Praying that all goes well for you and that you find immediate relief. Do know that when they mess with the nerves in your brain that sometimes you will have some strange feelings as the nerves heal (numbness, tingling, little shooting pains).
WOW! That is interesting. I will have to ask my neuro about that. What are the side effects of the blood pressure medicine. I take a very low dose of lisinopril. Did you have a squishy place where the incision was and did it ever go away?
Yes I had a squishy place that was originally like those balloons that are used to make animals for children at their parties. It got smaller as it got better. And at the end it was just a dripping that got in my hair. But the scab was very thick and took about 4 months to go away, with the bottom of it where the dripping was occurring.
Yes there were side effects, the worst being my feet would get episodes of tingly and numb on the bottom, but I considered it a small price to pay to be pain free.
Cathy Collum said:
WOW! That is interesting. I will have to ask my neuro about that. What are the side effects of the blood pressure medicine. I take a very low dose of lisinopril. Did you have a squishy place where the incision was and did it ever go away?