Has anyone experienced hydrocephalus and had to consider shunt placement?

[Guest guest]

I recently experienceed the complication hydrocephalus (fluid on the

brain) from the sarcoid impeding the cerebrospinal fluid flow. We have

been playing the wait game to see if it would resolve adding Cellcept

to an increased prednisone dose. However, the hydrocephalus has not

advanced ,but it isn't gone and my doctor wants to visit shunt

placement. The downside is that with sarciodosis the inflammation could

cause the shunt to malfunction or clog. This would require more surgery

in apatient that is already compromised. Right now I chose not to

entertain the shunt until I absolutely have to because ,even my doctor

says the odds for shunt placement in sarcoidosis isn't good. I am

compensating for it right now and hope it remains this way, my balance

is effected but it seems to be getting better. Any ensight, experience

or advice?

[Guest guest]

I recently experienceed the complication hydrocephalus (fluid on the

brain) from the sarcoid impeding the cerebrospinal fluid flow. We have

been playing the wait game to see if it would resolve adding Cellcept

to an increased prednisone dose. However, the hydrocephalus has not

advanced ,but it isn't gone and my doctor wants to visit shunt

placement. The downside is that with sarciodosis the inflammation could

cause the shunt to malfunction or clog. This would require more surgery

in apatient that is already compromised. Right now I chose not to

entertain the shunt until I absolutely have to because ,even my doctor

says the odds for shunt placement in sarcoidosis isn't good. I am

compensating for it right now and hope it remains this way, my balance

is effected but it seems to be getting better. Any ensight, experience

or advice?

[Guest guest]

, I had to have a shunt in 2004 a few weeks after brain surgery

that diagnosed my neurosarc. I had totally lost all control of myself

and had to be rushed to hospital. I couldn't see, stand, speak

cohearantly-I had fallen and could not move to get up. I do not

remember anything after the fall and had severe dimentia till the

fluid drained. I spent a month in rehab learning to walk and get

strong again, was on high dose of pred then. I am still dizzy, see

double, always tired but that is just the sarc. Currently I am not on

amy meds and the shunt dosen't bother me. so far so good.

[Guest guest]

, I had to have a shunt in 2004 a few weeks after brain surgery

that diagnosed my neurosarc. I had totally lost all control of myself

and had to be rushed to hospital. I couldn't see, stand, speak

cohearantly-I had fallen and could not move to get up. I do not

remember anything after the fall and had severe dimentia till the

fluid drained. I spent a month in rehab learning to walk and get

strong again, was on high dose of pred then. I am still dizzy, see

double, always tired but that is just the sarc. Currently I am not on

amy meds and the shunt dosen't bother me. so far so good.

[Guest guest]

>

> , I had to have a shunt in 2004 a few weeks after brain

surgery

> that diagnosed my neurosarc. I had totally lost all control of

myself

> and had to be rushed to hospital. I couldn't see, stand, speak

> cohearantly-I had fallen and could not move to get up. I do not

> remember anything after the fall and had severe dimentia till the

> fluid drained. I spent a month in rehab learning to walk and get

> strong again, was on high dose of pred then. I am still dizzy, see

> double, always tired but that is just the sarc. Currently I am not on

> amy meds and the shunt dosen't bother me. so far so good.

>

Hello Barbaraboliva, thanks for your reply. that sounds very scary. I

am currently in rehab for my balance issues that have come from the

hydrocephalus. It is good to know your shunt has made you feel better.

My PCP thinks it will solve my problems, my neurologist( sarcoid

specialists) believes it will cause me a lot of problems especially

becuase I am immunocompromised. Catch 22. thanks again I wish your well.

[Guest guest]

>

> , I had to have a shunt in 2004 a few weeks after brain

surgery

> that diagnosed my neurosarc. I had totally lost all control of

myself

> and had to be rushed to hospital. I couldn't see, stand, speak

> cohearantly-I had fallen and could not move to get up. I do not

> remember anything after the fall and had severe dimentia till the

> fluid drained. I spent a month in rehab learning to walk and get

> strong again, was on high dose of pred then. I am still dizzy, see

> double, always tired but that is just the sarc. Currently I am not on

> amy meds and the shunt dosen't bother me. so far so good.

>

Hello Barbaraboliva, thanks for your reply. that sounds very scary. I

am currently in rehab for my balance issues that have come from the

hydrocephalus. It is good to know your shunt has made you feel better.

My PCP thinks it will solve my problems, my neurologist( sarcoid

specialists) believes it will cause me a lot of problems especially

becuase I am immunocompromised. Catch 22. thanks again I wish your well.

[Guest guest]

Hello all,

This is Ebony and . We had the pleasure of meeting some of you

at the conference in Indy. I just wanted to reply because has

just had some issues with his shunt so I thought that it would be

appropriate.

was born with hydrocephalus and has had a VP shunt since birth.

He has had several revisions over his lifetime. Starting in 2004,

started having other neurological problems that weren't

attributed to the shunt. The doctors eventually concluded that it

was neurosarcoid. During this same time, started also having

problems with his shunt. That's why I find it very interesting that

your doctor warned you about clogging. I faintly remember one of

's docs saying something along those lines, but when I asked him

later about it, he dismissed the notion.

Anyway, all of his CT and MRI scans were coming back normal, but they

eventually decided to go in and check. They found that his pressure

was ridiculously elevated and that his shunt was blocked so they put

in a new one. He had great success with the new one until the last

month. He started having pain on his sides and also trouble

breathing. I finally convinced him to go to the ER and while there

they discovered that he had a baseball sized cyst and the end of his

shunt tubing and the tubing was all wrapped around. They performed

surgery the same day and he has been much better since.

I asked if the sarc could have anything to do with his complication.

THey said that it is possible, but not likely. Generally that

complication comes from infection and they found no sign of

infection. He meets with his neurosurgeon next week, so I will also

ask him then.

The shunt can malfunction, but without it, he would not be alive. If

yours isn't that serious maybe you can hold off on it, but I know

that he cannot.

is also on Cellcept and it has done wonders for him. At one

point he had to go off of it b/c his insurance wouldn't pay for it.

During that time, his memory, walk, and speech all got worse. At one

point he had to use a walker or cane to get around. Since going back

on it, he is much better and does not have to use a walking aid.

Don't get me wrong, he still has some memory other issues, but

nothing like when he went off of the Cellcept.

Well, we just wanted to tell you our story. I wish you all the best!

Ebony and

>

> I recently experienceed the complication hydrocephalus (fluid on

the

> brain) from the sarcoid impeding the cerebrospinal fluid flow. We

have

> been playing the wait game to see if it would resolve adding

Cellcept

> to an increased prednisone dose. However, the hydrocephalus has not

> advanced ,but it isn't gone and my doctor wants to visit shunt

> placement. The downside is that with sarciodosis the inflammation

could

> cause the shunt to malfunction or clog. This would require more

surgery

> in apatient that is already compromised. Right now I chose not to

> entertain the shunt until I absolutely have to because ,even my

doctor

> says the odds for shunt placement in sarcoidosis isn't good. I am

> compensating for it right now and hope it remains this way, my

balance

> is effected but it seems to be getting better. Any ensight,

experience

> or advice?

>

[Guest guest]

Hello all,

This is Ebony and . We had the pleasure of meeting some of you

at the conference in Indy. I just wanted to reply because has

just had some issues with his shunt so I thought that it would be

appropriate.

was born with hydrocephalus and has had a VP shunt since birth.

He has had several revisions over his lifetime. Starting in 2004,

started having other neurological problems that weren't

attributed to the shunt. The doctors eventually concluded that it

was neurosarcoid. During this same time, started also having

problems with his shunt. That's why I find it very interesting that

your doctor warned you about clogging. I faintly remember one of

's docs saying something along those lines, but when I asked him

later about it, he dismissed the notion.

Anyway, all of his CT and MRI scans were coming back normal, but they

eventually decided to go in and check. They found that his pressure

was ridiculously elevated and that his shunt was blocked so they put

in a new one. He had great success with the new one until the last

month. He started having pain on his sides and also trouble

breathing. I finally convinced him to go to the ER and while there

they discovered that he had a baseball sized cyst and the end of his

shunt tubing and the tubing was all wrapped around. They performed

surgery the same day and he has been much better since.

I asked if the sarc could have anything to do with his complication.

THey said that it is possible, but not likely. Generally that

complication comes from infection and they found no sign of

infection. He meets with his neurosurgeon next week, so I will also

ask him then.

The shunt can malfunction, but without it, he would not be alive. If

yours isn't that serious maybe you can hold off on it, but I know

that he cannot.

is also on Cellcept and it has done wonders for him. At one

point he had to go off of it b/c his insurance wouldn't pay for it.

During that time, his memory, walk, and speech all got worse. At one

point he had to use a walker or cane to get around. Since going back

on it, he is much better and does not have to use a walking aid.

Don't get me wrong, he still has some memory other issues, but

nothing like when he went off of the Cellcept.

Well, we just wanted to tell you our story. I wish you all the best!

Ebony and

>

> I recently experienceed the complication hydrocephalus (fluid on

the

> brain) from the sarcoid impeding the cerebrospinal fluid flow. We

have

> been playing the wait game to see if it would resolve adding

Cellcept

> to an increased prednisone dose. However, the hydrocephalus has not

> advanced ,but it isn't gone and my doctor wants to visit shunt

> placement. The downside is that with sarciodosis the inflammation

could

> cause the shunt to malfunction or clog. This would require more

surgery

> in apatient that is already compromised. Right now I chose not to

> entertain the shunt until I absolutely have to because ,even my

doctor

> says the odds for shunt placement in sarcoidosis isn't good. I am

> compensating for it right now and hope it remains this way, my

balance

> is effected but it seems to be getting better. Any ensight,

experience

> or advice?

>

[Guest guest]

I's so sorry you are having so much trouble again, I think there a lot of things we have that are related to our Sarc, but the docs just don't know enough to say it is or isn't, I think it is! I hope life gets better!

I do know about the walking with a cane, I am doing that right now, and even use a wheelchair for long periods of walking time, my legs are getting weaker and weaker, and Why because the Insurance company has denied the medication I need to stop the progression of the neurosarc, they say it is not Medially necessary? can you believe that, we are still fighting them on this issue!

Hope you have a blessed weekend, Marla

Hello all,

This is Ebony and . We had the pleasure of meeting some of you

at the conference in Indy. I just wanted to reply because has

just had some issues with his shunt so I thought that it would be

appropriate.

was born with hydrocephalus and has had a VP shunt since birth.

He has had several revisions over his lifetime. Starting in 2004,

started having other neurological problems that weren't

attributed to the shunt. The doctors eventually concluded that it

was neurosarcoid. During this same time, started also having

problems with his shunt. That's why I find it very interesting that

your doctor warned you about clogging. I faintly remember one of

's docs saying something along those lines, but when I asked him

later about it, he dismissed the notion.

Anyway, all of his CT and MRI scans were coming back normal, but they

eventually decided to go in and check. They found that his pressure

was ridiculously elevated and that his shunt was blocked so they put

in a new one. He had great success with the new one until the last

month. He started having pain on his sides and also trouble

breathing. I finally convinced him to go to the ER and while there

they discovered that he had a baseball sized cyst and the end of his

shunt tubing and the tubing was all wrapped around. They performed

surgery the same day and he has been much better since.

I asked if the sarc could have anything to do with his complication.

THey said that it is possible, but not likely. Generally that

complication comes from infection and they found no sign of

infection. He meets with his neurosurgeon next week, so I will also

ask him then.

The shunt can malfunction, but without it, he would not be alive. If

yours isn't that serious maybe you can hold off on it, but I know

that he cannot.

is also on Cellcept and it has done wonders for him. At one

point he had to go off of it b/c his insurance wouldn't pay for it.

During that time, his memory, walk, and speech all got worse. At one

point he had to use a walker or cane to get around. Since going back

on it, he is much better and does not have to use a walking aid.

Don't get me wrong, he still has some memory other issues, but

nothing like when he went off of the Cellcept.

Well, we just wanted to tell you our story. I wish you all the best!

Ebony and

>

> I recently experienceed the complication hydrocephalus (fluid on

the

> brain) from the sarcoid impeding the cerebrospinal fluid flow. We

have

> been playing the wait game to see if it would resolve adding

Cellcept

> to an increased prednisone dose. However, the hydrocephalus has not

> advanced ,but it isn't gone and my doctor wants to visit shunt

> placement. The downside is that with sarciodosis the inflammation

could

> cause the shunt to malfunction or clog. This would require more

surgery

> in apatient that is already compromised. Right now I chose not to

> entertain the shunt until I absolutely have to because ,even my

doctor

> says the odds for shunt placement in sarcoidosis isn't good. I am

> compensating for it right now and hope it remains this way, my

balance

> is effected but it seems to be getting better. Any ensight,

experience

> or advice?

>

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

I's so sorry you are having so much trouble again, I think there a lot of things we have that are related to our Sarc, but the docs just don't know enough to say it is or isn't, I think it is! I hope life gets better!

I do know about the walking with a cane, I am doing that right now, and even use a wheelchair for long periods of walking time, my legs are getting weaker and weaker, and Why because the Insurance company has denied the medication I need to stop the progression of the neurosarc, they say it is not Medially necessary? can you believe that, we are still fighting them on this issue!

Hope you have a blessed weekend, Marla

Hello all,

This is Ebony and . We had the pleasure of meeting some of you

at the conference in Indy. I just wanted to reply because has

just had some issues with his shunt so I thought that it would be

appropriate.

was born with hydrocephalus and has had a VP shunt since birth.

He has had several revisions over his lifetime. Starting in 2004,

started having other neurological problems that weren't

attributed to the shunt. The doctors eventually concluded that it

was neurosarcoid. During this same time, started also having

problems with his shunt. That's why I find it very interesting that

your doctor warned you about clogging. I faintly remember one of

's docs saying something along those lines, but when I asked him

later about it, he dismissed the notion.

Anyway, all of his CT and MRI scans were coming back normal, but they

eventually decided to go in and check. They found that his pressure

was ridiculously elevated and that his shunt was blocked so they put

in a new one. He had great success with the new one until the last

month. He started having pain on his sides and also trouble

breathing. I finally convinced him to go to the ER and while there

they discovered that he had a baseball sized cyst and the end of his

shunt tubing and the tubing was all wrapped around. They performed

surgery the same day and he has been much better since.

I asked if the sarc could have anything to do with his complication.

THey said that it is possible, but not likely. Generally that

complication comes from infection and they found no sign of

infection. He meets with his neurosurgeon next week, so I will also

ask him then.

The shunt can malfunction, but without it, he would not be alive. If

yours isn't that serious maybe you can hold off on it, but I know

that he cannot.

is also on Cellcept and it has done wonders for him. At one

point he had to go off of it b/c his insurance wouldn't pay for it.

During that time, his memory, walk, and speech all got worse. At one

point he had to use a walker or cane to get around. Since going back

on it, he is much better and does not have to use a walking aid.

Don't get me wrong, he still has some memory other issues, but

nothing like when he went off of the Cellcept.

Well, we just wanted to tell you our story. I wish you all the best!

Ebony and

>

> I recently experienceed the complication hydrocephalus (fluid on

the

> brain) from the sarcoid impeding the cerebrospinal fluid flow. We

have

> been playing the wait game to see if it would resolve adding

Cellcept

> to an increased prednisone dose. However, the hydrocephalus has not

> advanced ,but it isn't gone and my doctor wants to visit shunt

> placement. The downside is that with sarciodosis the inflammation

could

> cause the shunt to malfunction or clog. This would require more

surgery

> in apatient that is already compromised. Right now I chose not to

> entertain the shunt until I absolutely have to because ,even my

doctor

> says the odds for shunt placement in sarcoidosis isn't good. I am

> compensating for it right now and hope it remains this way, my

balance

> is effected but it seems to be getting better. Any ensight,

experience

> or advice?

>

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Hell Ebony and ,

Thanks for all your info it has been very helpful to me because sometimes you don't know which way is up or which way to go. I am sure The answer to get the shunt will be made for me if I wasn't functioning so well right now. It is a scary situation. The jury is still out for the cellcept because I am still having issues that i am not sure are because of the hydrocephalus or just something that will not go away because of scar tissue. I am glad is doing better, this is a battle that is a constant fight. Thanks for sharing!

Re: Has anyone experienced hydrocephalus and had to consider shunt placement?

Hello all,This is Ebony and . We had the pleasure of meeting some of you at the conference in Indy. I just wanted to reply because has just had some issues with his shunt so I thought that it would be appropriate. was born with hydrocephalus and has had a VP shunt since birth. He has had several revisions over his lifetime. Starting in 2004, started having other neurological problems that weren't attributed to the shunt. The doctors eventually concluded that it was neurosarcoid. During this same time, started also having problems with his shunt. That's why I find it very interesting that your doctor warned you about clogging. I faintly remember one of 's docs saying something along those lines, but when I asked him later about it, he dismissed the notion.Anyway, all of his CT and MRI scans were coming back normal, but they eventually decided to go in and

check. They found that his pressure was ridiculously elevated and that his shunt was blocked so they put in a new one. He had great success with the new one until the last month. He started having pain on his sides and also trouble breathing. I finally convinced him to go to the ER and while there they discovered that he had a baseball sized cyst and the end of his shunt tubing and the tubing was all wrapped around. They performed surgery the same day and he has been much better since.I asked if the sarc could have anything to do with his complication. THey said that it is possible, but not likely. Generally that complication comes from infection and they found no sign of infection. He meets with his neurosurgeon next week, so I will also ask him then. The shunt can malfunction, but without it, he would not be alive. If yours isn't that serious maybe you can hold off on it, but I know

that he cannot. is also on Cellcept and it has done wonders for him. At one point he had to go off of it b/c his insurance wouldn't pay for it. During that time, his memory, walk, and speech all got worse. At one point he had to use a walker or cane to get around. Since going back on it, he is much better and does not have to use a walking aid. Don't get me wrong, he still has some memory other issues, but nothing like when he went off of the Cellcept.Well, we just wanted to tell you our story. I wish you all the best!Ebony and >> I recently experienceed the complication hydrocephalus (fluid on the > brain) from the sarcoid impeding the

cerebrospinal fluid flow. We have > been playing the wait game to see if it would resolve adding Cellcept > to an increased prednisone dose. However, the hydrocephalus has not > advanced ,but it isn't gone and my doctor wants to visit shunt > placement. The downside is that with sarciodosis the inflammation could > cause the shunt to malfunction or clog. This would require more surgery > in apatient that is already compromised. Right now I chose not to > entertain the shunt until I absolutely have to because ,even my doctor > says the odds for shunt placement in sarcoidosis isn't good. I am > compensating for it right now and hope it remains this way, my balance > is effected but it seems to be getting better. Any ensight, experience > or advice?>

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Hell Ebony and ,

Thanks for all your info it has been very helpful to me because sometimes you don't know which way is up or which way to go. I am sure The answer to get the shunt will be made for me if I wasn't functioning so well right now. It is a scary situation. The jury is still out for the cellcept because I am still having issues that i am not sure are because of the hydrocephalus or just something that will not go away because of scar tissue. I am glad is doing better, this is a battle that is a constant fight. Thanks for sharing!

Re: Has anyone experienced hydrocephalus and had to consider shunt placement?

Hello all,This is Ebony and . We had the pleasure of meeting some of you at the conference in Indy. I just wanted to reply because has just had some issues with his shunt so I thought that it would be appropriate. was born with hydrocephalus and has had a VP shunt since birth. He has had several revisions over his lifetime. Starting in 2004, started having other neurological problems that weren't attributed to the shunt. The doctors eventually concluded that it was neurosarcoid. During this same time, started also having problems with his shunt. That's why I find it very interesting that your doctor warned you about clogging. I faintly remember one of 's docs saying something along those lines, but when I asked him later about it, he dismissed the notion.Anyway, all of his CT and MRI scans were coming back normal, but they eventually decided to go in and

check. They found that his pressure was ridiculously elevated and that his shunt was blocked so they put in a new one. He had great success with the new one until the last month. He started having pain on his sides and also trouble breathing. I finally convinced him to go to the ER and while there they discovered that he had a baseball sized cyst and the end of his shunt tubing and the tubing was all wrapped around. They performed surgery the same day and he has been much better since.I asked if the sarc could have anything to do with his complication. THey said that it is possible, but not likely. Generally that complication comes from infection and they found no sign of infection. He meets with his neurosurgeon next week, so I will also ask him then. The shunt can malfunction, but without it, he would not be alive. If yours isn't that serious maybe you can hold off on it, but I know

that he cannot. is also on Cellcept and it has done wonders for him. At one point he had to go off of it b/c his insurance wouldn't pay for it. During that time, his memory, walk, and speech all got worse. At one point he had to use a walker or cane to get around. Since going back on it, he is much better and does not have to use a walking aid. Don't get me wrong, he still has some memory other issues, but nothing like when he went off of the Cellcept.Well, we just wanted to tell you our story. I wish you all the best!Ebony and >> I recently experienceed the complication hydrocephalus (fluid on the > brain) from the sarcoid impeding the

cerebrospinal fluid flow. We have > been playing the wait game to see if it would resolve adding Cellcept > to an increased prednisone dose. However, the hydrocephalus has not > advanced ,but it isn't gone and my doctor wants to visit shunt > placement. The downside is that with sarciodosis the inflammation could > cause the shunt to malfunction or clog. This would require more surgery > in apatient that is already compromised. Right now I chose not to > entertain the shunt until I absolutely have to because ,even my doctor > says the odds for shunt placement in sarcoidosis isn't good. I am > compensating for it right now and hope it remains this way, my balance > is effected but it seems to be getting better. Any ensight, experience > or advice?>

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Thank you for your story. I am sure it will help many. I keep hearing people mention confrences. How could I find out what conferences are coming up?CathyEbonyWreh wrote: Hello all,This is Ebony and . We had the pleasure of meeting some of you at the conference in Indy. I just wanted to reply because has just had some issues with his shunt so I thought that it would be appropriate. was born with hydrocephalus and has had a VP shunt since birth. He has had several revisions

over his lifetime. Starting in 2004, started having other neurological problems that weren't attributed to the shunt. The doctors eventually concluded that it was neurosarcoid. During this same time, started also having problems with his shunt. That's why I find it very interesting that your doctor warned you about clogging. I faintly remember one of 's docs saying something along those lines, but when I asked him later about it, he dismissed the notion.Anyway, all of his CT and MRI scans were coming back normal, but they eventually decided to go in and check. They found that his pressure was ridiculously elevated and that his shunt was blocked so they put in a new one. He had great success with the new one until the last month. He started having pain on his sides and also trouble breathing. I finally convinced him to go to the ER and while there they discovered that he had a baseball sized cyst and

the end of his shunt tubing and the tubing was all wrapped around. They performed surgery the same day and he has been much better since.I asked if the sarc could have anything to do with his complication. THey said that it is possible, but not likely. Generally that complication comes from infection and they found no sign of infection. He meets with his neurosurgeon next week, so I will also ask him then. The shunt can malfunction, but without it, he would not be alive. If yours isn't that serious maybe you can hold off on it, but I know that he cannot. is also on Cellcept and it has done wonders for him. At one point he had to go off of it b/c his insurance wouldn't pay for it. During that time, his memory, walk, and speech all got worse. At one point he had to use a walker or cane to get around. Since going back on it, he is much better and does not have to use a walking aid. Don't get me

wrong, he still has some memory other issues, but nothing like when he went off of the Cellcept.Well, we just wanted to tell you our story. I wish you all the best!Ebony and >> I recently experienceed the complication hydrocephalus (fluid on the > brain) from the sarcoid impeding the cerebrospinal fluid flow. We have > been playing the wait game to see if it would resolve adding Cellcept > to an increased prednisone dose. However, the hydrocephalus has not > advanced ,but it isn't gone and my doctor wants to visit shunt > placement. The downside is that with sarciodosis the inflammation could > cause the shunt to malfunction or clog. This would require more surgery > in apatient that is already

compromised. Right now I chose not to > entertain the shunt until I absolutely have to because ,even my doctor > says the odds for shunt placement in sarcoidosis isn't good. I am > compensating for it right now and hope it remains this way, my balance > is effected but it seems to be getting better. Any ensight, experience > or advice?>

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Thank you for your story. I am sure it will help many. I keep hearing people mention confrences. How could I find out what conferences are coming up?CathyEbonyWreh wrote: Hello all,This is Ebony and . We had the pleasure of meeting some of you at the conference in Indy. I just wanted to reply because has just had some issues with his shunt so I thought that it would be appropriate. was born with hydrocephalus and has had a VP shunt since birth. He has had several revisions

over his lifetime. Starting in 2004, started having other neurological problems that weren't attributed to the shunt. The doctors eventually concluded that it was neurosarcoid. During this same time, started also having problems with his shunt. That's why I find it very interesting that your doctor warned you about clogging. I faintly remember one of 's docs saying something along those lines, but when I asked him later about it, he dismissed the notion.Anyway, all of his CT and MRI scans were coming back normal, but they eventually decided to go in and check. They found that his pressure was ridiculously elevated and that his shunt was blocked so they put in a new one. He had great success with the new one until the last month. He started having pain on his sides and also trouble breathing. I finally convinced him to go to the ER and while there they discovered that he had a baseball sized cyst and

the end of his shunt tubing and the tubing was all wrapped around. They performed surgery the same day and he has been much better since.I asked if the sarc could have anything to do with his complication. THey said that it is possible, but not likely. Generally that complication comes from infection and they found no sign of infection. He meets with his neurosurgeon next week, so I will also ask him then. The shunt can malfunction, but without it, he would not be alive. If yours isn't that serious maybe you can hold off on it, but I know that he cannot. is also on Cellcept and it has done wonders for him. At one point he had to go off of it b/c his insurance wouldn't pay for it. During that time, his memory, walk, and speech all got worse. At one point he had to use a walker or cane to get around. Since going back on it, he is much better and does not have to use a walking aid. Don't get me

wrong, he still has some memory other issues, but nothing like when he went off of the Cellcept.Well, we just wanted to tell you our story. I wish you all the best!Ebony and >> I recently experienceed the complication hydrocephalus (fluid on the > brain) from the sarcoid impeding the cerebrospinal fluid flow. We have > been playing the wait game to see if it would resolve adding Cellcept > to an increased prednisone dose. However, the hydrocephalus has not > advanced ,but it isn't gone and my doctor wants to visit shunt > placement. The downside is that with sarciodosis the inflammation could > cause the shunt to malfunction or clog. This would require more surgery > in apatient that is already

compromised. Right now I chose not to > entertain the shunt until I absolutely have to because ,even my doctor > says the odds for shunt placement in sarcoidosis isn't good. I am > compensating for it right now and hope it remains this way, my balance > is effected but it seems to be getting better. Any ensight, experience > or advice?>

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