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Post MVD Spinal Fluid Leak
Hello,
I recently had an MVD for compressions on my 5th and 7th nerve. 5 weeks post op, after feeling great, I developed swelling in my face and severe headaches. I went to the ER and was told to see my neurosurgeon as I had a small fluid collection on the back of my skull. My neurosurgeon has confirmed a csf leak and said that it would resolve hopefully in 4-8 weeks, and if not it can be surgically repaired. It has now been almost 3 weeks, I still feel horrible, have a high pitched hum in my ears. I also have pain on my left leg above my ankle that just does not go away and really really hurts!!!
Questions:
1) Can the pain in my leg be caused by the CSF leak?
2) How dangerous is the wait and see approach?
3) The dr. thinks (but has never seen this before) the swelling in my face is CSF being absorbed into my cheek.
4) How long is reasonable for the wait and see approach?
5) Should I get a 2nd opinion?
This has really affected my life, as I have been unable to return to work since the leak.
Thanks,
Kellie
Thank you in advance for your help.
I recently had an MVD for compressions on my 5th and 7th nerve. 5 weeks post op, after feeling great, I developed swelling in my face and severe headaches. I went to the ER and was told to see my neurosurgeon as I had a small fluid collection on the back of my skull. My neurosurgeon has confirmed a csf leak and said that it would resolve hopefully in 4-8 weeks, and if not it can be surgically repaired. It has now been almost 3 weeks, I still feel horrible, have a high pitched hum in my ears. I also have pain on my left leg above my ankle that just does not go away and really really hurts!!!
Questions:
1) Can the pain in my leg be caused by the CSF leak?
2) How dangerous is the wait and see approach?
3) The dr. thinks (but has never seen this before) the swelling in my face is CSF being absorbed into my cheek.
4) How long is reasonable for the wait and see approach?
5) Should I get a 2nd opinion?
This has really affected my life, as I have been unable to return to work since the leak.
Thanks,
Kellie
Thank you in advance for your help.
Kelly, my husband was just diagnosed with spontaneous intracranial hypotension - spinal fluid leaks. He has three and we do not know how it happened.
His sysmptoms- severe neck, shoulder and headache pain especially when he tries to sit up or stand. Many doctors tried to diagnose as migrane but it is not.
We tried a major blood patch yesterday (october 10) and he is seeing improvement. It is hard to tell if it has worked because he is currently still sore from all the poking and prodding. The blood patch was for 45 cc of blood, normal blood patches are for 20cc of blood. The reason for his is that he has 3 leaks one being in the C1 & 2. This is sort of a dangerous area and we are trying to avoid surgery. The thought is that with that much blood and then tilting him and letting gravity take over the body may seal the leak on it's own. Immediately after this procedure he was able to sit up for sixty minutes and eat and walk around the hospital. This is wonderful considering he has been flat on his back for the last two weeks.
I would not allow your neurosurgeon to let you wait 4-8 weeks. If you need a blood patch it is a very simple procedure. You need a spinal tap to measure the pressure fluid, an MRI of head and spine and the only thing that really showed us my husbands leaks was a myleography. If your neurosurgeon is blowing you off I would go somewhere else. Many doctors from what I read misdiagnose this problem.
A great web site to look at that explains it very simply is www.spinalheadache.org (look for spinal fluid leaks).
Good Luck!
His sysmptoms- severe neck, shoulder and headache pain especially when he tries to sit up or stand. Many doctors tried to diagnose as migrane but it is not.
We tried a major blood patch yesterday (october 10) and he is seeing improvement. It is hard to tell if it has worked because he is currently still sore from all the poking and prodding. The blood patch was for 45 cc of blood, normal blood patches are for 20cc of blood. The reason for his is that he has 3 leaks one being in the C1 & 2. This is sort of a dangerous area and we are trying to avoid surgery. The thought is that with that much blood and then tilting him and letting gravity take over the body may seal the leak on it's own. Immediately after this procedure he was able to sit up for sixty minutes and eat and walk around the hospital. This is wonderful considering he has been flat on his back for the last two weeks.
I would not allow your neurosurgeon to let you wait 4-8 weeks. If you need a blood patch it is a very simple procedure. You need a spinal tap to measure the pressure fluid, an MRI of head and spine and the only thing that really showed us my husbands leaks was a myleography. If your neurosurgeon is blowing you off I would go somewhere else. Many doctors from what I read misdiagnose this problem.
A great web site to look at that explains it very simply is www.spinalheadache.org (look for spinal fluid leaks).
Good Luck!
A related discussion, When will it end? was started.
I had a CSF leak following a lumbar puncture last month and an ER nurse gave me some wonderful advice (which I noticed the doctor also mentioned); caffeine.
Here's my experience: The ER called every anesthesiologists in the area to come in for a "blood patch" 2-days post LP and they couldn't get one to come in (9 hospitals in a 20-mile radius and not one anesthesiologist would drive in on a Friday night). They told me to come back the next day and go to labor and delivery where an anesthesiologist would "get to me" between epidurals and c-sections.
One long-time ER nurse suggested I buy some Excedrin because it had much, much higher levels of caffeine in it than coffee, cola, or energy drinks and wouldn't mess up my diabetes. She was right - I took 4 and the heartache went from an "8" on the pain-scale to about a "5" which was manageable for the next 12 hours.
I was skeptical but it was worth trying (if you don't have high blood pressure, have to avoid asprin, etc.).
Here's my experience: The ER called every anesthesiologists in the area to come in for a "blood patch" 2-days post LP and they couldn't get one to come in (9 hospitals in a 20-mile radius and not one anesthesiologist would drive in on a Friday night). They told me to come back the next day and go to labor and delivery where an anesthesiologist would "get to me" between epidurals and c-sections.
One long-time ER nurse suggested I buy some Excedrin because it had much, much higher levels of caffeine in it than coffee, cola, or energy drinks and wouldn't mess up my diabetes. She was right - I took 4 and the heartache went from an "8" on the pain-scale to about a "5" which was manageable for the next 12 hours.
I was skeptical but it was worth trying (if you don't have high blood pressure, have to avoid asprin, etc.).
Thank you so much for your advise. I am trying to drink caffeine (iced tea, coffee) but this seems to not have much effect. I have an appointment with my neurosurgeon on Monday and this will be 1 month since the leak was discovered, and I am sure we will discuss repair since this has been ongoing with no improvement. I did forget to mention that the leak is actually visible on the back of my head, filled with fluid. It has gone down a little bit but is still there and seems to go up and down, but never away. My neurosurgeon did asparate it to collect fluid for testing which did not show any infection. When he drained it the swelling went down in my face, but it refilled by the next day and the swelling came back. It was right after that when my leg started hurting. I am really concerned that maybe things are not healing properly and most of my incision has healed except for one small spot where the glue is still there and my hair appears to be matted. No sign of infection there though, it just still feels a little moist.
I will continue to stay down with my head elevated and my leg elevated too with heat on it. And to stay hydrated. Maybe Monday I will have a better idea of what needs to be done.
Again, thanks for the suggestions.
Kellie
I will continue to stay down with my head elevated and my leg elevated too with heat on it. And to stay hydrated. Maybe Monday I will have a better idea of what needs to be done.
Again, thanks for the suggestions.
Kellie
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
Cerebrospinal fluid (CSF) leak is one of the most common complications of microvascular decompression (MVD). It occurs in 5-10% of patients getting the porcedure (less with endoscopic methods and with dural grafts). The leak often results in a postural headache (worse upon standing, improved when lying down), and in severe cases can be associated with a secondary chiari malformation (where the brain sinks into the foramen magnum {the hole in the skull the spinal cord exits through]). If a secondary chiari is present, then the cervical spinal cord can also kink and develop abnormal functions as well. The sinking of the brain is reversible when the leak is fixed. A possible secondary chiari and related cervical cord kink, could result in headache, tinnitus (hum in the ears), balance problems, and pain/weakness in the extremities.
I would suggest an MRI of the brain and cervical spine to evaluate for the secondary chairi. Low pressure states from CSF leaks also cause diffuse dural enhancement (lining of the brain). A second reason to get the MRI is to rule out more ominous/rare complications of the surgery including brainstem stroke, etc. If the MRI confirms secondary chiari malformation and signs of a low pressure state, I would suggest repair. Your neurosurgeon is correct in that many will heal spontaneously, but I would not wait if you are having severe symptoms as you describe. Drink lots of fluids maintain your hydration, and some reports suggest caffiene is helpful for these headaches.
I hope this has been helpful.
Cerebrospinal fluid (CSF) leak is one of the most common complications of microvascular decompression (MVD). It occurs in 5-10% of patients getting the porcedure (less with endoscopic methods and with dural grafts). The leak often results in a postural headache (worse upon standing, improved when lying down), and in severe cases can be associated with a secondary chiari malformation (where the brain sinks into the foramen magnum {the hole in the skull the spinal cord exits through]). If a secondary chiari is present, then the cervical spinal cord can also kink and develop abnormal functions as well. The sinking of the brain is reversible when the leak is fixed. A possible secondary chiari and related cervical cord kink, could result in headache, tinnitus (hum in the ears), balance problems, and pain/weakness in the extremities.
I would suggest an MRI of the brain and cervical spine to evaluate for the secondary chairi. Low pressure states from CSF leaks also cause diffuse dural enhancement (lining of the brain). A second reason to get the MRI is to rule out more ominous/rare complications of the surgery including brainstem stroke, etc. If the MRI confirms secondary chiari malformation and signs of a low pressure state, I would suggest repair. Your neurosurgeon is correct in that many will heal spontaneously, but I would not wait if you are having severe symptoms as you describe. Drink lots of fluids maintain your hydration, and some reports suggest caffiene is helpful for these headaches.
I hope this has been helpful.
Hi Kellie,
I saw your post and just had to respond. The absolute authority on CSF leaks is Dr. Bahram Mokri of the Mayo Clinic in Rochester, Minnesota. He is my neurologist, although I am seeing him for other reasons.
Here is a link to one of his articles:
http://www.neurologyreviews.com/jan02/fluid.html
In addition to being the authority, he is also one of the kindest human beings I have ever met. A truly wonderful doctor.
Dr. Mokri is currently out on medical leave but scheduled to return on November 6th. I have an appointment with him on November 13th.
I don't know where you are located or if visiting him is even a possibility for you, but here is the number for Mayo Neurology in Rochester: 507-284-1588.
It may be hard to get an appointmet with him. Perhaps if your surgeon would intervene you might get in quicker.
I saw your post and just had to respond. The absolute authority on CSF leaks is Dr. Bahram Mokri of the Mayo Clinic in Rochester, Minnesota. He is my neurologist, although I am seeing him for other reasons.
Here is a link to one of his articles:
http://www.neurologyreviews.com/jan02/fluid.html
In addition to being the authority, he is also one of the kindest human beings I have ever met. A truly wonderful doctor.
Dr. Mokri is currently out on medical leave but scheduled to return on November 6th. I have an appointment with him on November 13th.
I don't know where you are located or if visiting him is even a possibility for you, but here is the number for Mayo Neurology in Rochester: 507-284-1588.
It may be hard to get an appointmet with him. Perhaps if your surgeon would intervene you might get in quicker.
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