Thanks Sally, I have heard that 5 to 10% of folks that have the MVD surgery end up witha CSF leak. I don’t really understand a lot about it but I keep having a build up of spinal fluid and it causes these massive headaches and neck pain. I go to the dr. tomorrow to see what else they can do. I’ll let you know.
sally choate said:
oh bless your heart am so sorry , thats just mess up!!
you pay so much money to do surgey what csf leak means am so new to this ,
and now you still hurting , i think i just pray i dont want to go threw more pain
thats crazy , sweetie i pray for you i hope your pain free !!! anyway
Hi there! I hope you are over the pain of this! I had my MVD in February- just over a month ago. How do you know if its a CSF leak from the nose, or not just a runny nose (or is it obviously different?) Also, I have a point along the scar that is red and puffy, quite painful (still on narcs) with a white "hard thing" sticking out- perhaps skin- I dont know. I'm resisting to not pick at it! Bad Sara! I guess I'm doing my own research, since at my post-op with my neuro, he took a fast glance at my scar and said, ok alls fine. I felt it was as fast as I blinked. He is a top neuro at Georgetown, so I should trust him 100%.
I was also vomiting, having chills and plain sick when I saw him last week- he said I had the flu. I'm just worried I have an infection or leak, probably being a hypocondriac right now with all of this, since I'm also in rehab from the surgery, thats on hold b/c I have a herniated disc from the odd posistions Ive been in from surgery and post. Any CSF or infection details would be super- so I can relax or be more confident with my Dr.
I am pain free from the TN- so this is all worth it! Yay!
Luckilly I see him this week about the disc and can ask him again!
Sara: My scar was crusty at times and I thought there were things sticking out of it but it was just the scabbing. I guess the difference in the CSF leak out of your nose is it's like just clear water that just falls out out of the blue. No congestion, no stuffiness or anything...just sitting there and all of a sudden it falls out. Strange and it didn't happen much or long for me. I have a "puddle" (only way I can describe it) towards the bottom of my incision. It is swollen and sometimes it feels squishy and then sometimes it hardens. I started having SEVERE headaches (off the charts) and that's how they found that I had a CSF leak. They did an MRI or CT scan (can't remember which). Then they did a spinal tap and the fluid was high and they drew some of it off and the headaches diminished. Other than my experience I don't know how you would know if you have one but if you start getting headaches that unbearable (even with narcs) then that would probably be a sign. I too was on the Percocet for about a month after my surgery. I am sorry about you having the flu on top of everything else. That has to be miserable. I also started having a lot of pain in my neck and that was another symptom of the leak. Last week I thought I was doing okay. I yawned and put my hands behind my head with my fists clenced stretching and went back on my fist with my head hitting the soft spot and it made a crunching sound (really gross)....after that I got a really bad headache again and stiff neck. They did another CT scan Friday but I have not heard the results yet. They offered to do another spinal tap to draw off more fluid. Supposedly the build up in the swollen place is fluid.I don't understand it all and my neuro was in a hurry and I couldn't really talk to him much but his PA called back and ordered the CT and offered the spinal tap. She keeps telling me to rest and take it easy and to be careful with my head. Well it's been almost 3 months since my surgery and I"m still not back at work. A lot of the reason is the fear of something happening. I still have this swollen squishy place and I don't understand why. They also said since I am a small person (and I'm not....5'4", 140 lbs) that it will just take a long time for the fluid to absorb into my body? Still have numbness in my head and left ear.
I wish I could answer your question better but I am still very confused about all that is going on with me. I still can't sleep on my left side and that is aggravating. I also still have TN pain from time to time and that scares me. I guess it's a wait and see game from here on out?
Also, the CSF leak for me didn't happen until about 4-6 weeks after the surgery.
Take care. Rest and allow your body to heal. Tale whatever meds you need to get you through it and just take it easy.
Cathy
Sara B said:
Hi there! I hope you are over the pain of this! I had my MVD in February- just over a month ago. How do you know if its a CSF leak from the nose, or not just a runny nose (or is it obviously different?) Also, I have a point along the scar that is red and puffy, quite painful (still on narcs) with a white "hard thing" sticking out- perhaps skin- I dont know. I'm resisting to not pick at it! Bad Sara! I guess I'm doing my own research, since at my post-op with my neuro, he took a fast glance at my scar and said, ok alls fine. I felt it was as fast as I blinked. He is a top neuro at Georgetown, so I should trust him 100%.
I was also vomiting, having chills and plain sick when I saw him last week- he said I had the flu. I'm just worried I have an infection or leak, probably being a hypocondriac right now with all of this, since I'm also in rehab from the surgery, thats on hold b/c I have a herniated disc from the odd posistions Ive been in from surgery and post. Any CSF or infection details would be super- so I can relax or be more confident with my Dr.
I am pain free from the TN- so this is all worth it! Yay!
Luckilly I see him this week about the disc and can ask him again!
To test to see if my CSF leak was coming out my nose, the neurosurgeons had me look down. This is known at the Tea Pot test. Thing is my leak started the day after surgery not weeks later. When in doubt please talk to your doctors.
My problem is I have trouble talking to my doctor. He doesn't explain things in detail. The other day he seemed to be in such a hurry and I couldn't get all the questions I had out. The PA called later but I still don't understand everything going on. I need to get more assertive when I go to the doctor. Bob Snodgrass posted some info on this.
Thank you for the details! Very helpful! I noticed a marble type bump at the tip of my incesion. Ill keep an eye on it! Next up- Herniated disc surgery due to position and lack of movement post up (with a bad back prior). I am happy and feeling mentally and spiritually strong. I'm sorry any of you had to deal with the extra complications! Stay well!
Hi! An update on my CSF issue. Sorry it’s been so long since I’ve updated but life just gets in the way some time. I have had several times where it feels like I have the CSF leak all over again. I still have the swollen place on the back of my head at the base of my incision and every now and then it’s like it builds up and gets tight and my neck will start hurting and then the headache from hell. The surgeon has said if it happens again they want to do a lumbar shunt and it will drain into my abdominal cavity. Well I do not want a lumbar shunt. I know if I have to, I have to but I sure would like to know if anyone else has had this problem or had a lumbar shunt and what the outcome was. I need relief from this build up of fluid in my head but I just honestly don’t want another surgery now. Any advice is welcome. Thanks!
I went for a second opinion on my CSF leak. This surgeon is suppose to be the best for the MVD surgeries and he said that my incision from the MVD surgery was not closed properly. He is going to take fat from my abdomen and put on the dura (lining of the brain) and then he’ll add more bonding material. He will then put more bone wax on the skull piece and more plates to hold the skull piece in place. I will have to stay in the hospital for three days with a drain in my back. I am just praying this fixes the problem. Scared since I just had surgery in Dec. but I know it has to be done.
I also had a CSF leak, but not after a major brain surgery like you, mine was after having a myelogram done which also left me with a headache from hell. The Neurologists answer to this problem was to perform a blood patch, which is done by merely drawing blood from my arm and injecting it into the subarachnoid space to close the leak. This does immediately close the leak thereby eliminating the headache. However, and this is a HUGE however, this blood patch is what caused my arachnoiditis and what caused my disability to happen in the first place. The blood patch was done in 95 and my arachnoiditis was diagnosed in 98. Don’t know if this will help any but I sure do wish you much luck and will add you to my prayer list!!
Good luck Cathy…you will be in my thoughts and prayers. I had that headache from hell for at least a week after my surgery. It was so awful. I’m sorry you’re having to go through all of this, but you WILL get better! My surgery was 14 months ago. It takes so long to heal from that surgery.
Thank you all for your thoughts and prayers. I am praying this will fix me and I can have some relief finally. I’ll let you know how it goes. Just really scared to have any surgery again at this point.
Thanks Judy. I'm scared but I'm going for it. I would love to be able to sleep on my left side or my back again. Also to be able to fix my hair in the mornings without this big bulging ball on the back would be a treat...not to mention not living in fear of when the next CSF headache will occur. Thanks for your thoughts.
HI, I AM VERY SORRY ABOUT WHAT YOU HAVE BEEN GOING THROUGH. AND THANK YOU FOR SHARING WITH US. I DEFINETLY DONT WANT TO GO FOR SURGERY AFTER READING THIS. I HOPE YOU FEEL BETTER SOON.
I don’t want to discourage anyone from having MVD surgery but I do suggest you do your research and find someone who does 100s of them a year instead of the surgeon I chose who only does a dozen or so a year. I don’t know why my repair was so shoddy. I have confidence that this new neurosurgeon will do a good job and fix me if he can. He did MVD on my 70 year old neighbor with excellent results. I’ll be okay. Just dreading having to go through surgery again this soon after my other one. I’ll get through…just dreading it. It’s a drain physically, financially, etc.
I feel bad for what you have been going through. I know, it's not that you get your money back if a procedure doesn't work, or that they would do a discount to a procedure to repair a job poorly done. It is frustrating and adds a lot of stress that we, as TN patients, don't need.
Good luck Cahty, hope everything goes well this time... It has to
Thanks. I have been told by many that I should consult an attorney since the first guy didn't seem to close me up right. I really don't know if I have any recourse. I am going to a different neurosurgeon this time. Praying for much success this go round. Hopefully the last time.
I am just curious about this whole CSF leak. Someone mentioned that while they had a leak the dr did a spinal tap and it showed increased pressure. Why does the amount of CSF and the intracranial pressure increase when what you have is a leak? I would think that since you are loosing CSF the pressure would be going down, like a water balloon with a small leak.
This worries be a little because I suffer from pretty much constant intracranial hypertension and I'm worried that this increases my chances of a CSF leak. As it is I'm on meds to try to lower it and still need therapeutic spinal taps. It's funny because I am one of the few people that come out of a tap feeling great! LOL
I hope you are all feeling better from your post-op issues. No one wants to fix one thing and have something else go wrong.
HI Cathy, I too had a CSF leak for 4 months after my MVD surgery, November 14th. I was put on an antihypertensive, Diamox, to lower the pressure and let the opening seal. As I said it took 4 months, but then miraculously I was taken off the Diamox and it was healed. The craniotomy incision where it was leaking out also healed and my hair was no longer sticky. The four month scab, which had gotten really thick, then started to come off, and in April, I was all better. I did not like the side effects of diamox as the bottoms of my feet got tingly and numb once or twice a day for about 10 minutes. Please write me and let me know how you are doing now.
I did not have any spinal taps, and when I was in the recovery room I touched my eyebrow, hairline, nose, etc. and had no pain. So the recovery, albeit long and annoying, was worth it as I am all better.
Except each time I have a pain in my face on the other side I panic. Like today, on my hairline, cheek, and nose. Its not supposed to happen again or be related to having had TGN on the other side, so I am just watching to see what develops.
My surgery was 14 months ago. It takes so long to heal from that surgery.