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Suggest Treatment For Neurological Complications Caused After Colloid Cyst Removal Surgery
Question: I had a colloid cyst removed in 2003, and was shunted and had 4 revisions. I got an csf leak do to over draining shunt. They took the shunt out but I still felt like I was over draining. I started to faint all the time and had orthostatic hypertension. I was literally in bed for over an year. They check my ICP it was low, they did every test to find leak but they never found the leak, so they took out the shunt. I had 3 blood patches and they all worked for short periods of time. It all started in 2006 and continues to the present. After a lot bed rest and lots of caffeine I started to feel better, but would get headaches after later in the afternoon. Let me also tell you, when I was in bed for that whole year, I would hear a noise in my neck, which sounded like liquid escaping from my neck. I would also, vomit, faint, blurry vision, and have tingling down my arms, headache that was better on lying down and worse when I was in the up position. Very sever neck pain and back of the head headaches. When I started to fell better I went to physical therapy for my neck. Big mistake, go very sick again and tried to commit suicide which failed. But I was back in bed hearing the liquid in the neck escaping, was back in bed for 6 months. Went out and saw Dr, Servuink in Cedar Cine in 2010. and change my He could not find the leak but did a blood patch which worked again for a few days, but it must of closed some of the leak because I was back to having headaches in the afternoon. A few years later, living with headaches mostly in the afternoon. I figured it was a small leak. Then I started to feel different and had a ct scan and it showed that I had hydrocephalus again. I went out to borrows in XXXXXXX and saw Dr. Najkji and he did a ETV in August of 2012. After a few months I started to feel better, then really good. I bought a new house in XXXXXXX of this year and I was moving stuff, and started to get low pressure headaches again. (What was weird was my eyes puffed up with puffy bags under my eyes and swelling above my eyes and water coming out of the corners of my eyes that started in 2011). After moving I got really sick and started to hear the sound in my neck again, but this time I would leak out of my nose and drain down my throat. Also, I have sleep apnea, mostly central sleep apnea and when I put on the mask, I would get a build up of fluid in the corners of my eyes. I went to see my neurosurgeon and I mentioned that if I turn my neck of crack it I would get even sicker. At the appointment in Sept of this year my bp was 165/115, so in front of my doctor I crack my neck and in a few minutes, I almost fainted and the check the BP again and it had dropped to 91/60. She thought it was my heart and decided I needed to see a heart doctor. I told her and every doctor, once I lie down all my symptoms go away. It had been 4 years since they did any test for a csf leak. Back to my eyes, I get very blurry and double vision. And when I saw my neurosurgeon she wanted to have my eyes checked. I when I saw the eye doctor I was in really bad pain, and my vision had changed considerable since I saw my doctor in XXXXXXX of 2014. This was in September of this year, so I had a follow up just a last week, my vision has changed again, so I have three pair of glasses that I use all of them at some point during the day. Back to my puffy eyes and watery eyes, I have asked doctors if it could be csf leaking from the corner of my eyes and they said know way, I think I asked on this site. So I went out and got a glucose sticks and checked my tears which all of sudden starts running down my face, believe or not it turned a dark brown so it was positive. Do not know if I could send pictures of my eyes to you guys. Just to mention I did faint back in 2009 and hit my forehead right between my eyes pretty hard on the tolit seat. I found out that is can called Pseudoepiphora, oculorrhea, cranio-orbital fistula, and traumatic brain injury. I get the feeling of high pressure were I feel, also, half my face is numb. I have contacted Dr. Gray at Duke but I have not yet spoken to her, I hoping I can find someone closer to XXXXXXX than NC. I already tried to comment suicide once, I was a 2 handicape golfer, and taught snow skiing, and pretty much enjoyed life. I have not done anything in years, I am a 54 old male. I can not keep going on like this. Hopefully, I can find the right doctor. I never had a csf drain or so newer test that they have now, like I said it has been 4 years since they checked for a csf leak. Please help, can it leak into the eyes.
Brief Answer:
Lets break it down and get your history straight, then we can dicuss soluti
Detailed Answer:
Hi there! Thanks for coming to HealthCareMagic.
Its taken me awhile to go through your detailed history and make sure I have all my facts straight. What I'm going to try and break the history you've given me down and address it piece by piece in chronological order. In between, I will interject my thoughts and ask some follow up questions to clarify. Finally at the end, I'll try and summarize my ideas for you and give you some actionable information that you can use.
If I get any of your history wrong or out of order, set me straight. I need to make sure I know your history in detail.
So lets start in 2003 when this Colloid cyst was removed and your VP shunt was implanted. From what I have gathered from your narrative... once the cyst was removed.. you developed hydrocephalus (enlarged ventricles in the brain due to the build up of CSF). To me that means that the cyst was somewhere near the ductal system and was causing pressure symptoms or seizures before the surgery.
Now, shortly after shunt implantation.. your VP shunt needed revision.. in fact multiple revisions. My first question here is WHY? What happened? Did the shunt get blocked? Infected? 4 revisions were done.. can you give me a general idea of WHY this was happening and WHERE each successive shunt was placed (ie Frontal (front of the head), Occipital (Back of the head), etc)?
Also, could you tell me WHAT KINDs of shunts were placed? Did they have programmable pressure valves or were they fixed? Programmable shunts are the ones where they use a magnetic ring to open and close the shunt bit by bit to control the Intra-Cranial Pressures. If you had a programmable shunt.. they would have warned you about getting MRI's with it on and the like.. the MRI would disrupt the shunt.
Also, Do you happen to have a scan of that cyst so I can look at it? You could scan it and upload it to the site, or email it to YYYY@YYYY and ask them to upload it to QueryID: 151517. If you do, it would do me a world of good to look at it for myself.
Now.. continuing with your medical history.. around 2006.. it looks like these successive shunts had the effect of OVERdraining the CSF from your ventricles... leading to the headaches, blurred vision and the like. Also at some point.. you started developing symptoms in your neck.
Here you say that there was an attempt to look for a CSF leak. My question is... what was going on with the shunt during this time? Was it removed? Had it been reprogrammed? What testing was done to look for the leak? I see that blood patches helped in the short term.. was any formal meningeal repair discussed with you at that time? Did they do any ICP pressure testing to confirm that your ICPs were low?
ICP pressure testing would have been a situation where they externalized the abdominal portion of your shunt and hooked it to a manometer (pressure gauge).. they would keep you at the hospital for a few days and take successive pressure readings to see if your symptoms are truly due to low Intracranial pressures or not.
At the same time.. was an MRI of your neck done? Did they look at the cord? Was there something called a syrinx detected? A syrinx is something like a cyst.. but present in the spinal cord instead of the brain. Was any surgery done on your neck at any time?
Around the year 2010.. a blood patch seemed to have worked to the point that you developed hydrocephalus yet again.. at this point I'm going to assume that you had no shunt... around a year later, you started developing puffiness of the eyes and excessive tearing.. (maybe CSF leak.. maybe something else)...
In 2012.. you underwent an Endoscopic Third Ventriculostomy (ETV).. Now what happened to the 2011 symptoms of tearing and puffiness after the ETV? Did they stay or did they go? Were they affected at all. Your headaches got better by the sound of it, but the puffiness is important to nail down here.
In XXXXXXX of this year.. you started having vision issues (double vision) and you went to an opthalmologist for testing. What did this Opthalmologist tell you? What testing did they do? What did they say about the puffiness around the eyes and the excessive tearing?
A couple months later in September you had a a fainting episode after cricking your neck and they did what seems like a cardiac work-up on you. What did they see during that workup? Is your heart functioning the way it should or did they find anything was wrong?
Now, in recent times, you have suffered from a severe trauma to the forehead from a fall and the puffiness has returned. You used glucose sticks in an attempt to see if the fluid that was making you tear up was CSF or plain old tears. Who told you to do that test? Why did they recommend that? Did they do any kind of scan or x-ray of your sinuses or skull after the fall? Did they see any fractures? Have you noticed any drainage from your nose on a regular basis? Like a runny nose that just wont quit? Also, how are the headaches and the other symptoms of low ICP's are they still bothering you now?
Whew.. there. I have gone through the history as I have understood it.. I've thrown in a few questions throughout that I think are important for understanding whats going on. Try and answer them for me if you can.
You may notice that I have pointedly ignored your symptoms of depression and suicide attempts. I have done that because the attempts make sense to me. Anyone in your situation would be come depressed and I can't honestly say 'I' WOULDN'T contemplate taking MY OWN LIFE, if I were in your situation. I feel for you here sir.. All I can say is that I hope you are seeking professional psychiatric help to keep these urges at bay while we work toward fixing your issues. But I don't blame you for the suicide attempts and I think the best way to prevent another attempt is to make some headway in understanding what is going on with you. So I'm going to concentrate on that end. If you are NOT seeing a psychiatrist and getting regular therapy.. I STRONGLY suggest that you do... like.. RIGHT NOW. There's no point in attempting to understand and fix this cranial issue if you don't plan on sticking around long enough to see it through. I hope I'm not coming across as harsh... i'm just trying to say.. i get it.. and you need to make sure you are getting the treatment you need.
Finally, lets discuss the idea of a CSF leak that is drainng out through your tear ducts. That's why you did the glucose testing I'm assuming. Lemme just tell you.. that whoever told you to do that test needs to be brought up on charges.. that is not a real test for CSF in any fluid and it causes ALOT of false positive.
Let me repeat myself.. THE GLUCOSE STRIP TEST YOU DID DOESN'T"T SHOW ANYTHING! There are lots of reasons why your natural tears would turn those glucose strips brown.. the first of which being that anytime you eat anything with sugar in it.. your tears will have some sugar in them for a short amount of time. But i'm not gonna get into the myriad of reasons why this is a bad test to do. I'm just gonna tell you the correct test to do.
You will need to get to your doctor and have him/her collect a sample of your tears and send it for 2 tests
1) A Beta Trace Protein test
AND
2) Beta 2 transferrin test
These are the real tests that can tell you if that fluid you are seeing is really CSF or not. The tests are accurate up to 96% of the time.. So they are just about as good as it gets.
For my part.. I don't want to assume that you have pseudoepiphora just yet. Its possible.. I repeat.. it's possible.. but there are other much more likely causes of your symptoms here. The first one I want to rule out is a SINUS injury...
When you fell and hit your head.. there is a possibility that your sinuses may have been fractured.. that fracturing could be irritating the tear ducts and glands which are present right next to the sinuses and THAT would be a million times more likley to causing tearing and puffiness in the eyes. Even sinus allergies would cause symptoms like that.
So, that's why i asked earlier.. were your sinuses ever checked? Do you have sinus issues at all? If you do.. how are they being dealt with?
So i'm going to stop here and summarize. I don't want to overload you in one sitting. This is going to have to be an ongoing converstation.. so for now I just want you to confirm that I got your history down correctly and I need you to answer my questions as best as you can. We can discuss the CSF testing in more detail later on when I know I've got things down straight.
Does that make sense? I hope I didn't put you to sleep with this long message. I'm just trying to be thorough.
lemme know what you are thinking, I look forward to your reply.
Happy Thanksgiving my friend,
Vinay
Lets break it down and get your history straight, then we can dicuss soluti
Detailed Answer:
Hi there! Thanks for coming to HealthCareMagic.
Its taken me awhile to go through your detailed history and make sure I have all my facts straight. What I'm going to try and break the history you've given me down and address it piece by piece in chronological order. In between, I will interject my thoughts and ask some follow up questions to clarify. Finally at the end, I'll try and summarize my ideas for you and give you some actionable information that you can use.
If I get any of your history wrong or out of order, set me straight. I need to make sure I know your history in detail.
So lets start in 2003 when this Colloid cyst was removed and your VP shunt was implanted. From what I have gathered from your narrative... once the cyst was removed.. you developed hydrocephalus (enlarged ventricles in the brain due to the build up of CSF). To me that means that the cyst was somewhere near the ductal system and was causing pressure symptoms or seizures before the surgery.
Now, shortly after shunt implantation.. your VP shunt needed revision.. in fact multiple revisions. My first question here is WHY? What happened? Did the shunt get blocked? Infected? 4 revisions were done.. can you give me a general idea of WHY this was happening and WHERE each successive shunt was placed (ie Frontal (front of the head), Occipital (Back of the head), etc)?
Also, could you tell me WHAT KINDs of shunts were placed? Did they have programmable pressure valves or were they fixed? Programmable shunts are the ones where they use a magnetic ring to open and close the shunt bit by bit to control the Intra-Cranial Pressures. If you had a programmable shunt.. they would have warned you about getting MRI's with it on and the like.. the MRI would disrupt the shunt.
Also, Do you happen to have a scan of that cyst so I can look at it? You could scan it and upload it to the site, or email it to YYYY@YYYY and ask them to upload it to QueryID: 151517. If you do, it would do me a world of good to look at it for myself.
Now.. continuing with your medical history.. around 2006.. it looks like these successive shunts had the effect of OVERdraining the CSF from your ventricles... leading to the headaches, blurred vision and the like. Also at some point.. you started developing symptoms in your neck.
Here you say that there was an attempt to look for a CSF leak. My question is... what was going on with the shunt during this time? Was it removed? Had it been reprogrammed? What testing was done to look for the leak? I see that blood patches helped in the short term.. was any formal meningeal repair discussed with you at that time? Did they do any ICP pressure testing to confirm that your ICPs were low?
ICP pressure testing would have been a situation where they externalized the abdominal portion of your shunt and hooked it to a manometer (pressure gauge).. they would keep you at the hospital for a few days and take successive pressure readings to see if your symptoms are truly due to low Intracranial pressures or not.
At the same time.. was an MRI of your neck done? Did they look at the cord? Was there something called a syrinx detected? A syrinx is something like a cyst.. but present in the spinal cord instead of the brain. Was any surgery done on your neck at any time?
Around the year 2010.. a blood patch seemed to have worked to the point that you developed hydrocephalus yet again.. at this point I'm going to assume that you had no shunt... around a year later, you started developing puffiness of the eyes and excessive tearing.. (maybe CSF leak.. maybe something else)...
In 2012.. you underwent an Endoscopic Third Ventriculostomy (ETV).. Now what happened to the 2011 symptoms of tearing and puffiness after the ETV? Did they stay or did they go? Were they affected at all. Your headaches got better by the sound of it, but the puffiness is important to nail down here.
In XXXXXXX of this year.. you started having vision issues (double vision) and you went to an opthalmologist for testing. What did this Opthalmologist tell you? What testing did they do? What did they say about the puffiness around the eyes and the excessive tearing?
A couple months later in September you had a a fainting episode after cricking your neck and they did what seems like a cardiac work-up on you. What did they see during that workup? Is your heart functioning the way it should or did they find anything was wrong?
Now, in recent times, you have suffered from a severe trauma to the forehead from a fall and the puffiness has returned. You used glucose sticks in an attempt to see if the fluid that was making you tear up was CSF or plain old tears. Who told you to do that test? Why did they recommend that? Did they do any kind of scan or x-ray of your sinuses or skull after the fall? Did they see any fractures? Have you noticed any drainage from your nose on a regular basis? Like a runny nose that just wont quit? Also, how are the headaches and the other symptoms of low ICP's are they still bothering you now?
Whew.. there. I have gone through the history as I have understood it.. I've thrown in a few questions throughout that I think are important for understanding whats going on. Try and answer them for me if you can.
You may notice that I have pointedly ignored your symptoms of depression and suicide attempts. I have done that because the attempts make sense to me. Anyone in your situation would be come depressed and I can't honestly say 'I' WOULDN'T contemplate taking MY OWN LIFE, if I were in your situation. I feel for you here sir.. All I can say is that I hope you are seeking professional psychiatric help to keep these urges at bay while we work toward fixing your issues. But I don't blame you for the suicide attempts and I think the best way to prevent another attempt is to make some headway in understanding what is going on with you. So I'm going to concentrate on that end. If you are NOT seeing a psychiatrist and getting regular therapy.. I STRONGLY suggest that you do... like.. RIGHT NOW. There's no point in attempting to understand and fix this cranial issue if you don't plan on sticking around long enough to see it through. I hope I'm not coming across as harsh... i'm just trying to say.. i get it.. and you need to make sure you are getting the treatment you need.
Finally, lets discuss the idea of a CSF leak that is drainng out through your tear ducts. That's why you did the glucose testing I'm assuming. Lemme just tell you.. that whoever told you to do that test needs to be brought up on charges.. that is not a real test for CSF in any fluid and it causes ALOT of false positive.
Let me repeat myself.. THE GLUCOSE STRIP TEST YOU DID DOESN'T"T SHOW ANYTHING! There are lots of reasons why your natural tears would turn those glucose strips brown.. the first of which being that anytime you eat anything with sugar in it.. your tears will have some sugar in them for a short amount of time. But i'm not gonna get into the myriad of reasons why this is a bad test to do. I'm just gonna tell you the correct test to do.
You will need to get to your doctor and have him/her collect a sample of your tears and send it for 2 tests
1) A Beta Trace Protein test
AND
2) Beta 2 transferrin test
These are the real tests that can tell you if that fluid you are seeing is really CSF or not. The tests are accurate up to 96% of the time.. So they are just about as good as it gets.
For my part.. I don't want to assume that you have pseudoepiphora just yet. Its possible.. I repeat.. it's possible.. but there are other much more likely causes of your symptoms here. The first one I want to rule out is a SINUS injury...
When you fell and hit your head.. there is a possibility that your sinuses may have been fractured.. that fracturing could be irritating the tear ducts and glands which are present right next to the sinuses and THAT would be a million times more likley to causing tearing and puffiness in the eyes. Even sinus allergies would cause symptoms like that.
So, that's why i asked earlier.. were your sinuses ever checked? Do you have sinus issues at all? If you do.. how are they being dealt with?
So i'm going to stop here and summarize. I don't want to overload you in one sitting. This is going to have to be an ongoing converstation.. so for now I just want you to confirm that I got your history down correctly and I need you to answer my questions as best as you can. We can discuss the CSF testing in more detail later on when I know I've got things down straight.
Does that make sense? I hope I didn't put you to sleep with this long message. I'm just trying to be thorough.
lemme know what you are thinking, I look forward to your reply.
Happy Thanksgiving my friend,
Vinay
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Cerebrospinal fluid (CSF) fistulas (rhinorrhea, otorrhea) are rare complications of head trauma unless associated with fractures of the middle third of the face. Occasionally the CSF fistula involves the orbit or the eyelids, resulting in a CSF orbitocele or blepharocele. Only a few such cases have been reported in the literature. We report the case of a 20-year-old man who developed CSF blepharocele after an assault. (Neurosurgery 11:525-526, 1982)
here is another detailed of events, maybe they could answer some of your question, my eyes swell up when I am sick and can hear it in my neck and dripping from my nose and damp in my ears. In 2003, I had a colloid cyst in the 3rd ventricle, which was causing hydrocephalus. It was removed in 2003 and 2 months later I was shunted for hydrocephalus. The shunt worked great for about 18 months. I started driving semi-trucks coast to coast. I think the vibration caused the shunt to siphon and I ended up with slit ventricles. My neurosurgeon put in a programmable Medtronic Strata Valve. After a few adjustments it was set at 1.5. I felt great for a few months and then I started to feel like it was over draining. After numerous adjustments always going back to 1.5 it would last for a few days then I would get another adjustment, going from 1 to 2 back to 1.5. Then in XXXXXXX 2006 the shunt got clogged and the hydrocephalus came back. They did a full revision, but kept the same programmable valve in. After the surgery it felt like it was over draining so we did adjustment after adjustment, always going back to 1.5. I would be fine for a few days then you will go back, like over draining. I probably had over 20 adjustments or more. Then in August, 2006 after an adjustment I got sicker than ever. With extreme nausea, extreme headaches, vomiting, orthostatic hypotension, blurred vision, facial numbness, tinnitus, a very stiff neck. Inside the top of my head felt raw and the back of my head and neck would be painful. I fainted a few times getting out of bed. I went to the ER and they did a CT and checked my pressure (which was normal), kept me overnight and made another adjustment. Strange thing, I started to notice a sound coming from my cervical spine between my ears. It had to be really quiet for me to hear it. It felt like liquid was escaping from that area. It was like every 20 minutes or so before I would hear it or feel it (Intermittently). It only lasted a few seconds at a time. I would and still do hurt in that spot. My neurosurgeon thought I was nuts for hearing the sounds in my cervical neck. I would lie in bed with my laptop with a wireless keyboard so I could lay flat and study what was going on with me. I read that taking a lot of caffeine and bed rest would and could close a CSF leak. So, I drank large amounts of caffeine and slowly I started to feel better, then great, valve set at 1.5 (The shunt was still in me). September 1, 2006, I went back to work driving a Semi until October 27th when the valve started to over drain again. After a few more adjustments my neurosurgeon tapped the valve on Dec 4th, 2006 and found out that it was indeed siphoning. We did an adjustment on December 4, and it felt great for a couple of weeks and then started to feel like it was over draining again. On January 8, 2007, I had a revision of the VP shunt with a replacement with a XXXXXXX anti-siphon valve with 1.5 setting. I went home sick like I did before with extreme nausea, extreme headaches, vomiting, orthostatic hypotension, blurred vision, facial numbness, and tinnitus. I knew this was a CSF leak. So in March 2007, my neurosurgeon tied off the shunt. Nothing had changed, I was still sick as a dog. The only time I got out of bed was to go swimming, which now believe was a mistake. July 11, 2007, they took out the shunt to monitor my pressure (ICP), During the test my neurologist noticed that the pressure was low. I asked him what position I should be in. He told me to make myself as comfortable as possible, and that was lying flat as possible. One of the neurosurgeons, who came in the next morning and said it looks like I have a CSF leak. I continued to lay flat throughout the day and the following night, never changing positions. My neurosurgeon came in the 2nd day and he said it doesn’t look like I have a CSF leak. They took out the catheter. When I got home I was still very sick. I looked up the test that they performed in the hospital for monitoring the pressure, and it stated that I needed to be in a different positions, upright 25 to 35%. The Dr. may have been unfamiliar with performing this specific test. Should I have the shunt re-inserted? In the article by XXXXXXX C. Hain he states,” CSF leaks might be unintentional consequences of an over draining CSF shunt. Leaks can also result from high-pressure hydrocephalus. In this situation, leaks may recur until the cerebral ventricles are shunted”. Back in 2006 after a full revision I knew I had a CSF leak. After taking caffeine and lying in bed for a while with the shunt in I became well again. I had 3 blood patches with the shunt still in me. The first blood patch worked great for a day and a half and the others seemed to help a little, just for short periods. I’ve been through every test possible to find a CSF leak, MRI’s of the cervical, thoracic spine, and head. CT myelogram’s of the thoracic, cervical spine, and cisternogram. What can be done to help me at this time? This has been going on for 4 years. I went out to Cedars-Sinai and saw Wouter Servienck .
here is another detailed of events, maybe they could answer some of your question, my eyes swell up when I am sick and can hear it in my neck and dripping from my nose and damp in my ears. In 2003, I had a colloid cyst in the 3rd ventricle, which was causing hydrocephalus. It was removed in 2003 and 2 months later I was shunted for hydrocephalus. The shunt worked great for about 18 months. I started driving semi-trucks coast to coast. I think the vibration caused the shunt to siphon and I ended up with slit ventricles. My neurosurgeon put in a programmable Medtronic Strata Valve. After a few adjustments it was set at 1.5. I felt great for a few months and then I started to feel like it was over draining. After numerous adjustments always going back to 1.5 it would last for a few days then I would get another adjustment, going from 1 to 2 back to 1.5. Then in XXXXXXX 2006 the shunt got clogged and the hydrocephalus came back. They did a full revision, but kept the same programmable valve in. After the surgery it felt like it was over draining so we did adjustment after adjustment, always going back to 1.5. I would be fine for a few days then you will go back, like over draining. I probably had over 20 adjustments or more. Then in August, 2006 after an adjustment I got sicker than ever. With extreme nausea, extreme headaches, vomiting, orthostatic hypotension, blurred vision, facial numbness, tinnitus, a very stiff neck. Inside the top of my head felt raw and the back of my head and neck would be painful. I fainted a few times getting out of bed. I went to the ER and they did a CT and checked my pressure (which was normal), kept me overnight and made another adjustment. Strange thing, I started to notice a sound coming from my cervical spine between my ears. It had to be really quiet for me to hear it. It felt like liquid was escaping from that area. It was like every 20 minutes or so before I would hear it or feel it (Intermittently). It only lasted a few seconds at a time. I would and still do hurt in that spot. My neurosurgeon thought I was nuts for hearing the sounds in my cervical neck. I would lie in bed with my laptop with a wireless keyboard so I could lay flat and study what was going on with me. I read that taking a lot of caffeine and bed rest would and could close a CSF leak. So, I drank large amounts of caffeine and slowly I started to feel better, then great, valve set at 1.5 (The shunt was still in me). September 1, 2006, I went back to work driving a Semi until October 27th when the valve started to over drain again. After a few more adjustments my neurosurgeon tapped the valve on Dec 4th, 2006 and found out that it was indeed siphoning. We did an adjustment on December 4, and it felt great for a couple of weeks and then started to feel like it was over draining again. On January 8, 2007, I had a revision of the VP shunt with a replacement with a XXXXXXX anti-siphon valve with 1.5 setting. I went home sick like I did before with extreme nausea, extreme headaches, vomiting, orthostatic hypotension, blurred vision, facial numbness, and tinnitus. I knew this was a CSF leak. So in March 2007, my neurosurgeon tied off the shunt. Nothing had changed, I was still sick as a dog. The only time I got out of bed was to go swimming, which now believe was a mistake. July 11, 2007, they took out the shunt to monitor my pressure (ICP), During the test my neurologist noticed that the pressure was low. I asked him what position I should be in. He told me to make myself as comfortable as possible, and that was lying flat as possible. One of the neurosurgeons, who came in the next morning and said it looks like I have a CSF leak. I continued to lay flat throughout the day and the following night, never changing positions. My neurosurgeon came in the 2nd day and he said it doesn’t look like I have a CSF leak. They took out the catheter. When I got home I was still very sick. I looked up the test that they performed in the hospital for monitoring the pressure, and it stated that I needed to be in a different positions, upright 25 to 35%. The Dr. may have been unfamiliar with performing this specific test. Should I have the shunt re-inserted? In the article by XXXXXXX C. Hain he states,” CSF leaks might be unintentional consequences of an over draining CSF shunt. Leaks can also result from high-pressure hydrocephalus. In this situation, leaks may recur until the cerebral ventricles are shunted”. Back in 2006 after a full revision I knew I had a CSF leak. After taking caffeine and lying in bed for a while with the shunt in I became well again. I had 3 blood patches with the shunt still in me. The first blood patch worked great for a day and a half and the others seemed to help a little, just for short periods. I’ve been through every test possible to find a CSF leak, MRI’s of the cervical, thoracic spine, and head. CT myelogram’s of the thoracic, cervical spine, and cisternogram. What can be done to help me at this time? This has been going on for 4 years. I went out to Cedars-Sinai and saw Wouter Servienck .
Brief Answer:
I beleive you have a leak, not through the tear ducts, but you have a leak
Detailed Answer:
Hi there, Thanks for following up. I'm familiar with the studies you've mentioned. I don't disagree with you that a fistula through the orbital region. I think it needs to be proven though.
The way I would go about doing that is to get a High resolution CT of the sinuses of the skull. Simultaneously, I would get those tests done I mentioned in the last answer.. the Beta Trace Protein test and the Beta-2 Transferrin test.
The CT might be able to delineate a fracture-line which is where the CSF leak may be occurring. The transferrin testing would prove that that is actually CSF leaking.
I think we need to focus hard on looking for the site of leakage, if at all possible. At the same time, another blood patch will give you at worst temporary relief.. at best, it MAY actually plug up the leak, even without us knowing where it is.
I don't think another shunt will be the way to go. It wouldn't stop the leak that I am pretty sure exists.
First step though, is getting another blood patch and getting some relief.
Let me know what you think.
Vin
I beleive you have a leak, not through the tear ducts, but you have a leak
Detailed Answer:
Hi there, Thanks for following up. I'm familiar with the studies you've mentioned. I don't disagree with you that a fistula through the orbital region. I think it needs to be proven though.
The way I would go about doing that is to get a High resolution CT of the sinuses of the skull. Simultaneously, I would get those tests done I mentioned in the last answer.. the Beta Trace Protein test and the Beta-2 Transferrin test.
The CT might be able to delineate a fracture-line which is where the CSF leak may be occurring. The transferrin testing would prove that that is actually CSF leaking.
I think we need to focus hard on looking for the site of leakage, if at all possible. At the same time, another blood patch will give you at worst temporary relief.. at best, it MAY actually plug up the leak, even without us knowing where it is.
I don't think another shunt will be the way to go. It wouldn't stop the leak that I am pretty sure exists.
First step though, is getting another blood patch and getting some relief.
Let me know what you think.
Vin
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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