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advice on shunts Pseudotumor cerebri
Hello, My name is Rhonda and Im 34 years old. I've been diagnosed with Pseudotumor cerebri for 4 years now. Everything my neuro has tried has not worked including yearly spinal taps and daily meds. So now were discussing a shunt. Im not sure on what type. I'm very nervous and confused about the whole thing. I've heard alot of negative things about shunts. Does anyone have any advice about it? Anything positive? Please do help!
Thank you,
Confused
Thank you,
Confused
hello my sister was diagnosed in 1972 at the age of 12 it took about 3 years to get it right spinal shunts, crainal,shunts eye sheeth and a part of the right side of her skul removed and has led a fall life masters edu. but now 40 years later she has the tumor its self effecting the same place
Hi Rhonda,
I'm 37 and was DX 'ed with BIH, another term they use for this condition back in April of this year.I was haveing really bad headaches for months.The year before in Aug 09,I started haveing cronic body pain,Very random,Docs said it was Fibro ( yea ) ok.,So I went inNov. of 09 to get a pair of glsses telling the optomitrist,i spelled that wrong but the lessor of the 2 eye Docs that a month ago I had this really bad sharp pain shoot ou of my right eye,What could it have been? He said I don't know but every thing looks fine your vision on the rght is alittle off ,not by much.Here are your glasses and sent me on my way. It wasent untill that ER visit in April that i got someone to listen to me.
My vision had been playing tricks on me for a few months pain behind the right eye.I even started with nausea and some vomiting on occasion.Of course the headaches never went away!Some months lasting 27 days,that was my longest.
3 weeks ago I called the eye Doc that found the Pseudotumor in the ER visit and 6 day stay it landed me back in April.HE has been My Angel every since taking good care of me,doing the field test checking to see how the swelling is and so on.HE had me on diamox and it stopped working for me or in my favor so he told me to stop the med witch he an I talked about in his office over and over again.That was on Friday Sept. 17,2010 two days later Sunday I was in the ER I had a Appt. to see him on Mon. I just did'nt make itthat Far. Of corse they Admitted me,He came in Mon. to see me and to the OPERATING RM I went on WEDS. Sept 22 2010 3weeks later .I'll say everything happened so fast... So today I dont want to scare you however i'll be real about it ...
Surgery went well the days that followed not so well,for me I had and still have a problem Breatheing , thats due to I'm told extra bariem fluid and a air pocket that got trapped on my ritght side under my liver and right lung.Its getting better and I'm sure it will go away , just dealing with all of it has ben crazy !
The surgon told me over and over again , this is not 100 percent you can still go blind,After a few times I finally answerd OK ! He also keeps saying this will not do anything for your HEADACHES and he is right . It has not done anything for the Headaches ... He has me on Oxy I'm not thrilled about that,and yet there just is not any
releaf at all NONE... I do go and see him today poss removal of the 24 staples he left in me .
For me Doc said that the eye operation would not be one he would recomend so I had the LP shunt put in .. I'm sure you have looked all of this up and if not,You get to sport a 2 in cut in the front,mine to the right side of my body,right of the belly button and a 2 in one on the lower spine,.. IF I get lucky I wont have to have the vent shunt put in and this one taken out.In my case nothing has gone as planned so I think of the worst and hope fo the best !
This is just my story , not everyon has the same one and for you things may go much different,Ihope for you. I didnt mention that Friday after surgery 2 days later was my go home date, Didnt make good on it ,I was in to much pain and thenthe breatheing prob. came up so I wasent released till Monday,HA only to return that very night in horrible pain my head ( not again ) the shunt , he put it in and it was set at 160 well... that was to high. my head felt explosive before the val was releasing soo I spent a totally of 14 days in the hospital with this. Oh after I returned he did reset it The Val to 100 .
I'm 3 weeks in still trying to get use to this , and its not easy an I keep digging to find anything to help ease at most my sanity !lol
Soo Please if you wanna talk , have a ? or just want to spill fill free to contact me ..
Thank you and i hope all goes well for you.
ps. I do want to add something I do think in my case it proves somethimg I just don't know what yet My weight I'm a smallperson ,always have been about 120 us lbs.
just too many ?'s and no answers , can be frustrating ! GOOD LUCK Angie
I'm 37 and was DX 'ed with BIH, another term they use for this condition back in April of this year.I was haveing really bad headaches for months.The year before in Aug 09,I started haveing cronic body pain,Very random,Docs said it was Fibro ( yea ) ok.,So I went inNov. of 09 to get a pair of glsses telling the optomitrist,i spelled that wrong but the lessor of the 2 eye Docs that a month ago I had this really bad sharp pain shoot ou of my right eye,What could it have been? He said I don't know but every thing looks fine your vision on the rght is alittle off ,not by much.Here are your glasses and sent me on my way. It wasent untill that ER visit in April that i got someone to listen to me.
My vision had been playing tricks on me for a few months pain behind the right eye.I even started with nausea and some vomiting on occasion.Of course the headaches never went away!Some months lasting 27 days,that was my longest.
3 weeks ago I called the eye Doc that found the Pseudotumor in the ER visit and 6 day stay it landed me back in April.HE has been My Angel every since taking good care of me,doing the field test checking to see how the swelling is and so on.HE had me on diamox and it stopped working for me or in my favor so he told me to stop the med witch he an I talked about in his office over and over again.That was on Friday Sept. 17,2010 two days later Sunday I was in the ER I had a Appt. to see him on Mon. I just did'nt make itthat Far. Of corse they Admitted me,He came in Mon. to see me and to the OPERATING RM I went on WEDS. Sept 22 2010 3weeks later .I'll say everything happened so fast... So today I dont want to scare you however i'll be real about it ...
Surgery went well the days that followed not so well,for me I had and still have a problem Breatheing , thats due to I'm told extra bariem fluid and a air pocket that got trapped on my ritght side under my liver and right lung.Its getting better and I'm sure it will go away , just dealing with all of it has ben crazy !
The surgon told me over and over again , this is not 100 percent you can still go blind,After a few times I finally answerd OK ! He also keeps saying this will not do anything for your HEADACHES and he is right . It has not done anything for the Headaches ... He has me on Oxy I'm not thrilled about that,and yet there just is not any
releaf at all NONE... I do go and see him today poss removal of the 24 staples he left in me .
For me Doc said that the eye operation would not be one he would recomend so I had the LP shunt put in .. I'm sure you have looked all of this up and if not,You get to sport a 2 in cut in the front,mine to the right side of my body,right of the belly button and a 2 in one on the lower spine,.. IF I get lucky I wont have to have the vent shunt put in and this one taken out.In my case nothing has gone as planned so I think of the worst and hope fo the best !
This is just my story , not everyon has the same one and for you things may go much different,Ihope for you. I didnt mention that Friday after surgery 2 days later was my go home date, Didnt make good on it ,I was in to much pain and thenthe breatheing prob. came up so I wasent released till Monday,HA only to return that very night in horrible pain my head ( not again ) the shunt , he put it in and it was set at 160 well... that was to high. my head felt explosive before the val was releasing soo I spent a totally of 14 days in the hospital with this. Oh after I returned he did reset it The Val to 100 .
I'm 3 weeks in still trying to get use to this , and its not easy an I keep digging to find anything to help ease at most my sanity !lol
Soo Please if you wanna talk , have a ? or just want to spill fill free to contact me ..
Thank you and i hope all goes well for you.
ps. I do want to add something I do think in my case it proves somethimg I just don't know what yet My weight I'm a smallperson ,always have been about 120 us lbs.
just too many ?'s and no answers , can be frustrating ! GOOD LUCK Angie
Hello!
I too was diagnosed with pseudo tumor cerebri but that diagnosis was changed to Inter cranial Hypertention. It has been a nightmare for me I have had 14 shunt revisions! and now I am having a problem with low ICP. If I can give any advice or help in any way let me know..I am only 27! and would love to talk
I too was diagnosed with pseudo tumor cerebri but that diagnosis was changed to Inter cranial Hypertention. It has been a nightmare for me I have had 14 shunt revisions! and now I am having a problem with low ICP. If I can give any advice or help in any way let me know..I am only 27! and would love to talk
MEDICAL PROFESSIONAL
Hi,
Most common symptoms in Pseudotumor cerebri could be headache, nausea & vomiting, and vision loss due to the raised intracranial pressure. However, obesity and other diseases could be additive factors in raising the intracranial fluid, therefore it is essential to get these factors evaluated with the doctor. Few medications may be used to reduce fluid buildup in brain and to relieve pressure. Weight loss and cessation of other drugs especially steroids may lead to improvement in your symptoms. Surgery such as therapeutic shunting to lower down CSF pressure may be required in few of the cases. Hope this information proves helpful to you.
Take Care & Regards!!!
Most common symptoms in Pseudotumor cerebri could be headache, nausea & vomiting, and vision loss due to the raised intracranial pressure. However, obesity and other diseases could be additive factors in raising the intracranial fluid, therefore it is essential to get these factors evaluated with the doctor. Few medications may be used to reduce fluid buildup in brain and to relieve pressure. Weight loss and cessation of other drugs especially steroids may lead to improvement in your symptoms. Surgery such as therapeutic shunting to lower down CSF pressure may be required in few of the cases. Hope this information proves helpful to you.
Take Care & Regards!!!
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