Living and Functioning with a csf leak

[Concerned Gal]

I was hoping to hear how those of us who are trying to function normally (ie work etc) with a csf leak are able to do so. Any tips?

I know there are some of us who have leaks that are resistent to treatment via blood patches etc and surgery isn't an option as the exact site of the leak won't reveal itself. So, we have had to battle on with some degree of symptoms.

Would love to share experiences so that we can all help each other.

[repeat leaker]

I have had several spontaneous leaks. My journey is listed below:

2002: CSF Leak - healed via bedrest. Never found on imaging.
2004: CSF Leak - healed via blood patches (it took 4!). Leak found at L 4/5
2005: CSF Leak - saw Dr. Shievink and had 1 blood patch - never found leak
2006: CSF Leak - returned to LA and Schievink found the link at T10-12. Glue patch and blood patch - neither worked. Met up with Dr. @ northwestern in Chicago who does an intersting blood patch at multiple levels. He got in 30 ccs of blood! 2 patches the second worked.

I have been symptomatic off and on. I work a full time job and have 2 young kids - I am blessed with a forgiving wife.

I am going through a very good stretch now....able to exercise and work most of the day without a headache.

To answer your question - daily I drink lots of water. When I am symptomatic I try and lie down as much as possible - sometimes at work if needed. Hydration is key. Unfortunately I also take Vicodin to take the edge off the headache, even if just for a short time.

[Concerned Gal]

Wow, full on. I can understand how it must feel.

Do you find caffeine helps you? I am on theophylline at the moment and am anxious about reducing my dosage in case i go downhill.

My doctors have never really offered me anything for the pain. Do you find the Vicodin helps with the neck stiffiness?

And finally, if you don't mind me asking, is there anything that you can think of that pre-disposed you to be a repeat leaker?

[repeat leaker]

I was on theophylline once, however cafeine works the best for me when I am leaking. Just a tip - I would recommend cafeine pills vs. soda. This may be a silly tip however when you can't exercise because your are leaking, and you are lying down a lot the soda really packs on the calories. Nothing worse than getting over the leak and having another 10lbs to deal with!

Vicodin does work for my neck pain. I generally will take a Vicodin if I cannot lie down, and I don't take it when I am working. The thing about Vicodin is you won't get addicted if you are only taking it when you have pain. If you take it without pain you will start getting into the "high", from what I understand.

As far as why I am a repeat leaker - my mom has the same condition. It is my understanding there are virtually no cases of genetic CSF leaks. Dr. Shievink has diagnosed us both and believes it is a connective tissue disorder that is affecting the dura.

In closing - this may sound odd as well, however I have been feeling better since I started taking Vitamin B12 daily. Don't ask me why - however since I have started I have had several headache free days.

My prayers are with you.

[Concerned Gal]

Hehehe, i noticed that soda "assists" in weight gain. But i'm loving it. After vomiting when upright for months, it has brought me back to a nice healthy weight. Although the Dentist wasn't pleased!

It's funny you say lying down when symptomatic. I am a lot better than I was but still have pains in the head and I've found i'm better to fight through it then lie down. As soon as I lie down once, I have more pains and struggle more for the rest of the day when I am upright. My pains tend to be there and go by themselves atm (which I guess I'm grateful for).

Interesting about the B12. Might have to consider that.

[repeat leaker]

Something else I have taken is the herb "Horesetail". They say this is for connective tissue, which theoretically would help to strengthen the dura. I have taken it and have had ok results. Just something else to try if you are wanting to try different things.

[Concerned Gal]

Did you notice a big difference coming off the theophylline? I'm considering coming off to see whether the patch worked or whether it's just the theophylline. Also, any thoughts on how long you have to take theophylline before it assists in reducing symptoms. Couldn't find anything in relation to csf leaks.

[repeat leaker]

CG,
Sorry, I don't really remember the after-effects of theo. I remember being on it and coming off but don't remember overall effects. Back when I was on it I was also on a lot of meds.

RL

[Jaded1xx]

RL

I feel your pain! (literally) :D Could you tell me the name of the doctor you saw at Northwestern? Did you like him? I'm looking for a good doctor to take care of this once and for all... thanks!

[repeat leaker]

The doc at Northwestern is Dr. Ali Shaibani.

According to Janelle RN, Dr. Shaibani's nurse (312-695-4050) (fax: 312-695-4075) he personally diagnosis traumatic or spontaneous CSF leaks and performs the actual floroscopic guided epidural blood patches - both cervical, thoracic and lumbar.

He sees patients at the neuro-surgical clinic by appointment (312-695-8143) Galter Pavillion, 675 N. St. Clair, Suite 20-100, Chicago, IL.

He is a great person, very caring, and very interested in CSF leaks. His procedure is a multiple site blood patch.

[Jaded1xx]

Thank you so much for the information! I'm going to make an appointment with him and see what happens...:)

Christy

[PainInTheNeck]

Hi there....

I think we have met;) .
Anyway...I was shocked to hear that you have gone through all of this without pain meds!!! I am still at the mostly in bed stage. I am 8 days from having a blood patch. The only possible way I have been able to be out of bed has been because of pain meds. Quite often I feel pressure that I assume would be pain if I did not have the meds in me.

I do worry about addiction but my Dr.'s reassure me that as long as I take the meds as prescribed and only as needed for pain that I should be ok. I do not have to take as many as I did before the blood patch.

The last 8 days I had cut way down on taking meds as I was trying to stay down to give the blood patch the best possible chance to work. I have come to the conclusion that I will not be affecting the outcome of the blood patch now, by doing light things around the house. However, I do not know how I could do anything except go to the bathroom if I didnt have pain meds on most days.

So anyway dear, maybe some pain meds could help you to be more functional. That just still floors me that you have faced all of this with no pain meds!!!!!

Also...my Dr. prescribed Amitriptyline on a nightly permanent basis. It is supposed to be an anti-depressant but he said they have found it works poorly as such but has a good effect on dulling nerve pain. He started me on this on a low dose...for 7 nights I am to take 10 mg, then 7 more take 20 mg, and then start taking 30 mg per night. This is taken regardless of if I am feeling pain at the moment or not.

Good luck! You are a help to many people and I hope I have helped you some.

[Jaded1xx]

RL, thank you so much for referring me to Dr. Shaibani! He is wonderful, and I think that I have finally found the doctor that is going to "fix me"! Thank you so much!!!

Christy

[squeakysmum]

RL, thank you so much for referring me to Dr. Shaibani! He is wonderful, and I think that I have finally found the doctor that is going to "fix me"! Thank you so much!!!

Christy

Christy,

have you seen him yet? Please post your experiences! I've contacted his office as well, for my husband. Since we're out of state, we're sending copies of his test results and notes so that they can be reviewed before we fly halfway across the country to see him.

Janelle was very kind and encouraging (a nice change of pace :) ) but we're too gun-shy to get our hopes up...again. Still, it's an avenue we are happy to pursue.

Good luck to you, and please let us know how it goes!

Best,

-Christina

[dagaz]

I've had a leak for 13 years, I've had 7 bifrontal craniotomies, 1 craniofacial craniotomy and 7 shunt revisions including a programable shunt... I think the magnet on my refridgerator or my speaker's messed that one up! :eek: For the first couple of years my NS wouldn't give me any thing for the pain unless I was in the hospital, Obviously I spent a LOT of time there. :(

I moved to a smaller town finally a Dr, seeing I was loosing weight (I went down to 87lbs) figured I couldn't lay flat all of the time... he finally put me on Tylenol #4's .. not only did they whack me right out of it, they gave me terrible re-bound head aches on top of my low pressure headaches... :eek:

I moved again after 3 more shunt revisions and some begging for someone to help me my GP finally put me on a low dose hydromorph contin, as well as tylenol#3 for break through pain.

I am only on 12 mg of the hydromorph and take the T3's maybe once a day, I still spend 85% of my time laying flat on my stomache with my head to the side. Some days are so unbearable I don't know if I can go through another.

My leak started after my first bi-frontal craniotomy to remove a tumor that involved my pituitary and surounding tissues, I sneezed after the packing came out of my nose and because I was told not to sneeze I tried to suppress it, I filled a 5 oz juice( the hospital ones) full of csf. I don't remember going into surgery but I do remember going for the CT prior to it, I would have 50 babies with out any pain treatment before going through that again.

My NS tried a lumbar shunt, fat packing , muscle packing ( from my right thigh... really nice thick scar )

Three of the other surgeries went much the same with the fat packing etc. Three years ago I had the Craniofacial craniotomy, it didn't work either in fact I bend my head to read a book and my leak constantly gushes from my nose if obviously not caught on to the book etc...

I've told you of my shunt horrors in my past posts here, if you need to talk my NS concider me a record holder for the longest most severe leak in Canada.... Not fun...

Anyway I try to keep infection at bay, because that is my biggest fear, I know there is nothing anyone can do for my leak except help me live with it the best that I can...


Hmmmm What fun...:(

[Jaded1xx]

Christy,

have you seen him yet? Please post your experiences! I've contacted his office as well, for my husband. Since we're out of state, we're sending copies of his test results and notes so that they can be reviewed before we fly halfway across the country to see him.

Janelle was very kind and encouraging (a nice change of pace :) ) but we're too gun-shy to get our hopes up...again. Still, it's an avenue we are happy to pursue.

Good luck to you, and please let us know how it goes!

Best,

-Christina

Christine,

I HIGHLY recommend Dr. Shaibani! He is the first doctor I have found that actually cares, and really knows what he's doing. I saw the ENT Monday who is going to assist Dr. Shaibani with all the testing, and he tried to blow me off like so many of the ENT's before him. After arguing with him for a while, he went and called Dr. Shaibani. When he came back, his attitude had totally changed. He was receptive and ready to get the ball rolling. Don't know what was said, but thank God for Dr. Shaibani! So, I go next week to have all the tests redone, which is what should have been done a long time ago. I say go see him - I've even been to Mayo, and they did NOTHING! I really think he is your best shot... I will keep you updated on how the testing goes and whatnot.

Take care,
Christy

[squeakysmum]

Christine,

I HIGHLY recommend Dr. Shaibani! He is the first doctor I have found that actually cares, and really knows what he's doing. I saw the ENT Monday who is going to assist Dr. Shaibani with all the testing, and he tried to blow me off like so many of the ENT's before him. After arguing with him for a while, he went and called Dr. Shaibani. When he came back, his attitude had totally changed. He was receptive and ready to get the ball rolling. Don't know what was said, but thank God for Dr. Shaibani! So, I go next week to have all the tests redone, which is what should have been done a long time ago. I say go see him - I've even been to Mayo, and they did NOTHING! I really think he is your best shot... I will keep you updated on how the testing goes and whatnot.

Take care,
Christy

Christy,

I'm glad you were able to see him; I hope the testing is productive and that he is able to find what he's looking for.

Dr. Dillon at UCSF was interested and caring,too - a great guy I would highly recommend - though in the end, he did join the "I don't see evidence of a leak" camp like all the others. And heck, maybe he's right - maybe it's *not* a leak. I think Shaibani will be our last ditch effort in that direction, and if he comes up empty-handed as well, we'll look for other causes.

Good luck with your procedures, and do keep us posted!

-Christina