spontaneous csf leak...

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spontaneous csf leak...

Postby emmacos » Mon Apr 30, 2012 11:24 am

Hi All,

We are being told, after icp monitoring showed Helen has low pressure, that she most likely has a spontaneous csf leak, and that this is causing her head pain.

Does anyone have experience of this, and what can be done to help, or is it difficult to sort out? Ive read about blood patches, and just wonder how effective these are... they are thinking it is probably a cranial leak as she has had a lot of fluid coming out her nose and ears... they seem unsure whether that is linked, but I think it probably is.

Can a blood patch help cure a cranial leak or just a spinal one?

Emma.x
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Re: spontaneous csf leak...

Postby jfreema » Sat May 05, 2012 2:57 pm

Emma, I don't know the answer to your question, but just wondered how Helen is doing. How is she?
Jennifer
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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Re: spontaneous csf leak...

Postby emmacos » Sun May 06, 2012 6:41 am

Hi Jennifer,

She's still in hospital waiting for a transfer to another hospital under Graham Flint, who is a ns who specialises in chiari. We're just waiting for a bed... its like a long drawn out nightmare... waiting waiting waiting...

It doesn't help that its a bank holiday weekend, so nothing will really start happening again now till tuesday - just keeping our fingers and toes crossed that something will happen next week. Its just going on too long!

Emma.x
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Re: spontaneous csf leak...

Postby LFRM » Tue May 08, 2012 4:22 pm

Hi Jennifer, I am Laura from Mexico. I have Chiari 0, Syringomyelia due to Tethered Cord Syndrome. I have three surgeries. I also have a lumbar shunt. I have many experience with CSF leaks. Last year I had one in my nose, ear and three in the spine at the same time this was before the decompression surgery. Right now I have one in my nose, three in the cervical spine, two in the throaccic spine and one more a the lumbar spine!! I can give you all the advice of the world in order to survive with leaks!!!

First of all you have to tell me, does she has Chiari? If she has, the CSF leaks will dismished if she has a decompression surgery. Did she has already one? The cause for CSF leaks in the case of Chiari and SM is that the cerebral spinal fluid (CSF) is not comming down in the posterior fossa, so this generates pressure in the brain, the CSF looks for a "door" to go out, so the ears and nose are the best doors!! When this happens she is passing from intracranial hypertension to low intracranial pressure so she will have head aches which are terrible, really terrible.

What you can do? First of all find the cause, if she has Chiari then she will need surgery, as the nose leak can be the door for a meningeal infection and she could get meningtis very easily. Second, and while you find de the final solution, you can giver her coffee or cokes with tylenol JUST WHEN THE PAIN IS VERY HIGH. Caffeine produces CSF, so her pain will disminished, this is the best cure, but I will not recomend that you do this fore ever or on a daily basis as it is proven that a lot of caffeine makes your ventricles bigger, they grow when you make them produce CSF on a daily basis. If this happens it is like producing a little hydrocephalus and then the CSF leaks will worsen, this will be a vicious circle. So you just give her coffe or coke with tylenol when needed.

A more adecuate solution, but this depends on PAIN will be: give her Gatorade all day long, and also give her potassium, as she is lossing CSF she is loosing potasium and electrolytes it is like having diarreah, this makes her headache worst, so drinkable potassium will help her too. Potasium comes in tablets, if you give her one tablet, she will just absorb what she needs. The real problem with potassium is when you give it to her in her vein like and injection, and she if she does not needs it, then she could have a seizure, so you have to avoid potassium in the vein unless it is given by a doctor. If you do not want to give her pure potassium then give her real orange juice, bananas or apple juice all day long. All of them have potassium, but remember this is not the cure, this is just while you find the cause of the CSF leak.

Let me tell you that I use to live on a daily basis with cokes, coffe with asprines, great solution, but dangerous one, because I had this vicious cycle: more pain, more leaks until I discover potassium as I have leaks plus the lumbar shunt I loose all the electrolytes everyday so since I discovered potassium my life changed, as I do not have heaaches, I am in a better mood, happy mood, and irritability disminished and depression disappeared.

I hope this serves.

Laura
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Re: spontaneous csf leak...

Postby LFRM » Tue May 08, 2012 4:27 pm

I have not read Helen story until now, so the final solution for her headache will be potassium if you are still in the hospital make them check her potassium levels if she has them low, then then can put an IV potassium and this will help her a lot and while she is with the CSF leaks, give her potassium and gatorade. It really changed my life.
Laura
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Re: spontaneous csf leak...

Postby LFRM » Tue May 08, 2012 5:25 pm

One more thing, another important thing is to know exactly the source of the CSF leak. In my experience an ear or nose leak do not produce such pain, in my case they produced relief, I felt great after all the water comming out my headache disminished. But as I have many CSF leaks, I can tell you that the CSF leak that produced pain in my case were the lumbar leaks, not even the thoraccic ones produced such a great headaches as the lumbar ones. So perhaps besides the nose and ear CSF leak she has a lumbar or thoraccic one, you have to find them. They usually appeared in surgery places, like Tethered Cord Syndrome Surgery, if she has one before she will probably have a CSF leak there. Finding a leak is very very difficult. They are many different studies to look for them these are:

-MRI cisternography, they put gadolineum in the spine and look for the leaks with an MRI, in this case the CSF leak has to be huge enough to be seen.
-Radionuclide cisternography, they put radioactive iodine in your lumbar spine and then with a special CT in nuclear medicine they look for CSF leaks, if you have a slow CSF velocity the leaks will never be seen as they took the images in two or four hours and the iondine travels very very slow in the spine son in some case the images come out positive until 24 hours later but they do not take the images at that moment, so many times it comes negative.
-CT mylography, they put radioactive iodine in your spine and then take a CT from you spine, this is the most secure way of showing CSF leaks.

After you have find the source, then they have to decide what happens. An ear or nose leak in Chiari usually is because of Chiari, the CSF is not comming down from the posterior fossa into the spine. If she has surgery already then perhaps she has a cyst. This is my case. I have a cyst right there in the decompression surgery site. It seems doctors do not cut enough the occipital bone or the atlas, so I have a cyst which is impeding the CSF flow, I will have a second surgery next week. So before thinking to close the leaks for me it is better to find out the exact site of the CSF leak.

Please forgive my English and spelling mistakes.

Laura

A blood patch will be used in the lumbar or thoraccic region, NOT in the brain, do not let them put a blood patch in the nose or ear because it is like putting blood in the brain, the brain does not have freely blood circultating the blood is just circulating in veins and artheries, so thinking in putting an injection of blood there would not help it would damabe her. Blood patchs are usually done in the spine, lumbar or thoraccic regions. I had one once, and I felt terrible after it as I did have the CSF leak due to high intracranial pressure (HIP), so when they closed the CSF Leak at the lumbar region I have the worst HIP of my life, fortunately the nose took care of that and it started comming out from my nose!!! So the main lesson here is that if you close the CSF leak at the lumbar region she will have the ears and nose leaks, as the main problem is not correcting it, Chiari, or a complication of decompression surgery.

Please tell me, had she done a decompression surgery already? If not these leaks will only be corrected by surgery. If she had a decompression surgery then you must look for a complication of the surgery, something is not well done there and she will need a redo surgery.

I hope this serves.

Laura
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Re: spontaneous csf leak...

Postby emmacos » Wed May 09, 2012 4:44 am

Dear Laura,

Thankyou so much for your replies.

Helen had decompression surgery in 2004, but she developed a pseudomeningocele, which they felt should be left. I have spoken to other people, and The Chiari Institute who say that needs to be surgically resolved.... up to now it hasnt been.

We are waiting for a bed to get her transferred to a more specialist NS in Birmingham (we are in England), and we are hoping the leak will then be found and sorted out.

Helen has low pressure, so I think there must be a leak somewhere. I will mention the potassium, or get her some tablets, and the gatorade (what is that?)

I am just praying something will be done to help her soon.

Emma.x
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Re: spontaneous csf leak...

Postby LFRM » Wed May 09, 2012 5:57 am

Emma:

I hava a meningocele too!!! I have the same exact problem!!! And I am full of CSF leaks. I will have surgery next week, although the NS I have get is not quite convinced about making the surgery!! I found an article about pseudomeningocele and the need for surgery, please send me your email so you can send it to you and perhaps you can download it and show it to your doctor there. It is named: Pathophysiology of persistent syringomyelia after decompressive craniocervical surgery by Dr. Heiss form the NIH in USA. It says that meningocele or pseudomeningocele grow when the CSF is not comming from the posterior fossa to the spine even after surgery because the space is still narrow, so what they did was to open the space in some patients which had already the decompression surgery but still have a growing SM and in many cases a meningocele or pseudomeningocele. What they did in the reasearch was to open more the posterior fossa or scratch a little more the atlas and in some cases C2. The article is about resistent SM after Chiari Surgery. Does she has SM (syringomyelia)?

Let me tell you that after my decompression surgery I felt great but then all of the sudden everything started to appear again, all the old symptoms, so I have a complete MRI and then the meningocele appeared!!! So I will take it out because the SM is growing again. The problem with this redo surgery is to have a plan, a step by step plan. This means, besides taking out the pseudomeningocele or meningocele what they are going to do so it does not grow again, as it grew because CSF is not circulating properly, if this is not corrected she will have the cyst again, so she needs more space between the posterior fossa and the spine, so your NS should tell you what is he going to cut, he needs to open the space, taking the meningocele or pseudomeningocele is not enough. So ask him for his plan.

It is good that she has a pseudomeningocele, this means it is outside the dura, mine is a meningocele as it is insise the dura, it is more difficult to take it out.

Reasons to convince your doctors about the redo surgery are:

1. CSF leak nose produces meningitis as she has her nose open to the external environment so many bacterias can go inside her brain, in order to have a nose CSF leak the bone of her nose is already broken, this means she has a whole already. After the surgery, you will need to find out if the whole closes, because if not, eventhough she does not have the CSF leak anymore the whole is sitll there. You will need a CT of her brain in order to see if she has a whole. If you send me your email I can send my images of the TAC so you can see where what am I talking about. This is true with for her ear too. One thing doctors will want to do is to close up the nose leak, but if you close it down she will feel terrible as the main reason for having it is high intracranial pressure and this is dangerous, so for me it is better take out the pseudomeningocele first so the intracranial pressure goes down, and then see if her nose comes to normal again, if not she will need surgery in her nose too. The ear is easier to close up.
2. If she has SM then it will grow, and this is dangerous as you know, so this is another reason to have surgery.

Surgery is a risk, a huge risk as you can imagine, but life like this is not life so you have to analyzed risk againts benefits. In my case I decided to go for it, I am a mother of 50 years old with teenagers, so I hope everything will be ok.

Gatorade is this beverage for athlets, they have it in the US, perhaps you know Power Aid? Both of them are electrolytes with water with flavor like orange or strawberry, atlhets used them to prevent dehydratation. I do not know the equivalent in England but just giver her electrolytes all day long.

When they carry out the study to find out the leak you should review them, it is very difficult to find the CSF leaks, I can tell you many ways of finding them, I can show you mine as an example, I have them all around the spine.

Please forgive me if I am being rude, but until Wednsday that I have surgery you can send me all the emails you want, this is my email: lfrade@prodigy.net.mx

Laura
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