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Pseudo Tumor Cerebri / Lumbar Shunts
Jan 24, 2008 05:34PM
- 10 comments
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Hi My name is Adriana and I live in Phoenix, Arizona. I'm 31 yrs old. When I was first 22 I was diagnosed with PTC. I had no clue as to what was going on! and pretty much still don't.
A few years after my lumbar shunt surgery, I started getting dizzy spells and severe vertigo. I was diagnosed with Meniere's Disease (Syndrome). I have lost significant hearing in my left ear and in the past week started experience a fullness or hollowness in my right ear. I'm afraid that the Meniere's is acting up again or that the shunt is malfunctioning and may need to be replaced.
Has anyone else experienced and or think that the Menieres is related directly or indirectly to the PTC??
A few years after my lumbar shunt surgery, I started getting dizzy spells and severe vertigo. I was diagnosed with Meniere's Disease (Syndrome). I have lost significant hearing in my left ear and in the past week started experience a fullness or hollowness in my right ear. I'm afraid that the Meniere's is acting up again or that the shunt is malfunctioning and may need to be replaced.
Has anyone else experienced and or think that the Menieres is related directly or indirectly to the PTC??
Hi, my name is Donna and I have a 12 y/o son with PTC they say that it is rare in young boys and just informed me that he will need a shunt I was wondering how you have done since the shunt and has it helped in the pain level.
Hi Adrianna, nice to meet you. My name is Kim. Sorry I don't have info on Meniere's Disease. I would like to as you about the shunt, though. What was it like having it done? Where is it? Was it a difficult decision to make? I'm almost maxed out the Topamax, already done so on the Diamox and take Neurontin three times a day. My neck hurts so badly as well as my head and I live in sunglasses. The neurologist says after the next tap perhaps we should do a shunt. Not a for sure, a thought at this moment. I want to know more about it/them.
Thanks
Thanks
Hi Adrianna, my name is Ashley and I'm 15 I've been dealing with PTC since I was 12. Its very rare anyways but ever more rare in younger children. I've had 15 shunt surgeries so far, and I've had about 30 spinal taps (Lumbar puncture). My Neurologists have tried the Diamox on me before and it didn't help when they first diagnosed me. They tried it again after they put in the shunt and it helped. My Neuro-Surgeons say I have a very hard disease to treat and I'm the most complicated that they have seen yet. I go to Vanderbilt Childrens Hospital and they have one wonderful in treating this and staying on top of things.
Hi
I have just had my 3rd shunt surgery in 4 months.This time the doctor put a control switch in my abdomin that can be adjusted with a magnet to either increase or decrease pressure. I'm hoping this works because this disease really *****!
I have just had my 3rd shunt surgery in 4 months.This time the doctor put a control switch in my abdomin that can be adjusted with a magnet to either increase or decrease pressure. I'm hoping this works because this disease really *****!
Hi,
I am Mariann I am 36 and have had PTC for 14 years. I spent a year with spinal taps and in pain then I had a shunt put in my lumber area. I had the surgery because I didnt wont to live in pain anymore and I was going blind in my left eye. It had gottin so bad I couldn't get out of bed. With the shunt and meds I was back to my life in 6 weeks. I still have headachs, neck pains and some eye problem. Not even close to what is was.
Hi-
My name is Jenna, and am 24 years old. I was diagnosed with ptc about 4 years ago. I have battled severe headaches and feeling dizzy... almost like a car sickness feeling all of the time also. I finally decided to have a Lumbar Shunt surgery after exhausting all other options including medications that made me very sick, and also numerous spinal taps which also made me very sick! I also had Chiari surgery at the same time. I just had a mild Chiari, but if I didn't have the Chiari surgery done along with the Lumbar Shunt it would have caused it to become worse from the spinal fluid being drained, which would have pulled my brain further down into my spinal column. It's been about 6 weeks since my surgery, and my headaches are tons better... most days none at all! The dizzy car-sick feeling is also tons better! The only problem I am having now is with the tubing. I have had terrible sharp stabbing pains in my stomach and pelvic area! The doctors keep telling me this is normal and will take a little while for it to scar down... but I'm in agony! Has anyone had any of these problems with the tubing after the Lumbar Shunt surgery, and if so how long did it take to settle down? Any information would be great! Thanks so much!!!
My name is Jenna, and am 24 years old. I was diagnosed with ptc about 4 years ago. I have battled severe headaches and feeling dizzy... almost like a car sickness feeling all of the time also. I finally decided to have a Lumbar Shunt surgery after exhausting all other options including medications that made me very sick, and also numerous spinal taps which also made me very sick! I also had Chiari surgery at the same time. I just had a mild Chiari, but if I didn't have the Chiari surgery done along with the Lumbar Shunt it would have caused it to become worse from the spinal fluid being drained, which would have pulled my brain further down into my spinal column. It's been about 6 weeks since my surgery, and my headaches are tons better... most days none at all! The dizzy car-sick feeling is also tons better! The only problem I am having now is with the tubing. I have had terrible sharp stabbing pains in my stomach and pelvic area! The doctors keep telling me this is normal and will take a little while for it to scar down... but I'm in agony! Has anyone had any of these problems with the tubing after the Lumbar Shunt surgery, and if so how long did it take to settle down? Any information would be great! Thanks so much!!!
Hi-
My name is Bethany and I am 29. I was first diagnosed with PTC at 16. It went away for a while then came back 2 years ago. I have had at least 20 spinal taps and my back can't take it anymore. I finally had the lumbar shunt placed in December. I didn't have any headaches for two months after surgery and then they came back. Now my pappilodema is coming back and I am back on the diamox and feeling miserable. The surgeon who placed the shunt insists it is working, but now a different surgeon is going to do a revision. I just want to get back to having some resemblence of a normal life again. I wanted them to take the lumbar shunt out and put the other kind of shunt in my head, because they can adjust things on it. The new neurosurgeon I met with was rude and completely inconsiderate. I am just wondering if doctors are ever going to treat this like the life altering disease that it is.
My name is Bethany and I am 29. I was first diagnosed with PTC at 16. It went away for a while then came back 2 years ago. I have had at least 20 spinal taps and my back can't take it anymore. I finally had the lumbar shunt placed in December. I didn't have any headaches for two months after surgery and then they came back. Now my pappilodema is coming back and I am back on the diamox and feeling miserable. The surgeon who placed the shunt insists it is working, but now a different surgeon is going to do a revision. I just want to get back to having some resemblence of a normal life again. I wanted them to take the lumbar shunt out and put the other kind of shunt in my head, because they can adjust things on it. The new neurosurgeon I met with was rude and completely inconsiderate. I am just wondering if doctors are ever going to treat this like the life altering disease that it is.
I am 33 and after about 20 years of severe headaches and no relief I started having vision changes. I woke up one day and while taking a shower basically felt like after weeks of seeing black that I was unable to get the fuzzy sleep out of my eyes so i went to urgent care. I spent 11 hours that day going from one doctor to the next with all of them in a panic that this is something that has to be done taken care of now attitude to a 3 week wait to get into the neurologist. While the man is nice enough as we all know this is ot a common illness so most do not know how to handle it. I have been there for the past year and a half. Until Last week when I decided it is time to take the next step. I have daily headaches, dizzy spells, blackouts- in the sense for 30 -60 second intervals i cannot see, black auro around things, and the list goes on.
I went into the doctor and let him know that its time to take the next step. I have been on diamox for the last year plus+, been through 5 spinal taps, and endless doctors visits. I do not want to lose my sight and alll the reservastions the doctor has is no longer acceptable to me..
I want to move to the next step and see if I can get some relief.
Tuesday I have an appointment for scheduling the shunt..and then its off to the eye dr. to set up the optic nerve windowing.
wish me luch...
Heatheer
I went into the doctor and let him know that its time to take the next step. I have been on diamox for the last year plus+, been through 5 spinal taps, and endless doctors visits. I do not want to lose my sight and alll the reservastions the doctor has is no longer acceptable to me..
I want to move to the next step and see if I can get some relief.
Tuesday I have an appointment for scheduling the shunt..and then its off to the eye dr. to set up the optic nerve windowing.
wish me luch...
Heatheer
Hi guys! My namsehe Angela, I have a sister with similar condition as you all. she's been diagnosed with pseudo tumor
cerebri 5 yrs ago, after that she had a shunt put in to place but after a year and half the doctors had remove it because
it had cause a bad and hse almost died from gangreen. She is getting sick again worst than before. In my opion it seems
a if the shunts cause more problems that good or I may have that this out of frustation it just seems as if thids disease is
here to stay and not going any where.I was just wandering if any one could recomend a Neurosurgon that can help her any
way can reach me a ***@****. Than you. I will be praying for all of us that is going through this in one way or
another.
Angela
cerebri 5 yrs ago, after that she had a shunt put in to place but after a year and half the doctors had remove it because
it had cause a bad and hse almost died from gangreen. She is getting sick again worst than before. In my opion it seems
a if the shunts cause more problems that good or I may have that this out of frustation it just seems as if thids disease is
here to stay and not going any where.I was just wandering if any one could recomend a Neurosurgon that can help her any
way can reach me a ***@****. Than you. I will be praying for all of us that is going through this in one way or
another.
Angela
Hello all... I've gone back and re-read your entries to my posting and I wanted to give you a few more details.
After being diagnosed with PTC, I searched and searched the internet for clues as to what this disease is. Do not give up hope.
I live in Phoenix, AZ and there is a neuro surgeon by the name of Dr. Harold Rekate, he works out of the Barrows Neurological hospital. He specializes in shunts but in pediatrics. Although I was not a child when this happened (I was 22yrs old) he did my surgery because 10 years ago this was extremely rare disease. My own family doctor couldn't diagnose what it was. He tried by giving me pills at first. He thought it was migraines, then when those pills didn't work, he thought it could be hormones (I had just had my daughter) so he gave me hormone pills, still didn't work. He did CT scans, MRIs, and several spinal taps to no avail. The breakthrough was that the hospital never checked for PRESSURE while doing a spinal tap!! Please make sure to ask what the pressure of the spinal fluid is in your spinal tap. Once that is established they will know to do a shunt. The lumbar shunt worked for me and continues to work for me after 10 years.
I no longer have headaches like the ones I had before my shunt. I have learned to diagnose my headaches. Are they tension headaches? Stress? Hunger headaches? Seasonal allergy headaches? I have learned to listen to my body. I go thru a checklist of items when trying to decide if my headaches are because of my shunt. If for what ever reason I feel that it's because of my shunt I go in for a check up. Like any thing that is manufactured, it can and will one day need to be replaced.
The lumbar shunt I have is composed of three pieces. The first tube goes up my spine, there there is a t section that connects the first tube to the second tube. This section has a little ball that rolls when I lay down and rolls back into positon when I stand up. This is what regulates the spinal fluid from draining. The second tube went around my midsection and drained into my stomach. BUT I kept having a lot of problems with this tube coiling and attaching to the inside of my belly. I could always tell when it did that coiling thing because it would bulge very noticeably. I had to go back twice to have them uncoil it but after the second time the surgeon decided to take out that tube and just leave enough of it to drain into my pelvic cavity. It's been working ever since.
It's late and I'm going to bed now, but if you have more questions let me know how I can help you.
Adriana
After being diagnosed with PTC, I searched and searched the internet for clues as to what this disease is. Do not give up hope.
I live in Phoenix, AZ and there is a neuro surgeon by the name of Dr. Harold Rekate, he works out of the Barrows Neurological hospital. He specializes in shunts but in pediatrics. Although I was not a child when this happened (I was 22yrs old) he did my surgery because 10 years ago this was extremely rare disease. My own family doctor couldn't diagnose what it was. He tried by giving me pills at first. He thought it was migraines, then when those pills didn't work, he thought it could be hormones (I had just had my daughter) so he gave me hormone pills, still didn't work. He did CT scans, MRIs, and several spinal taps to no avail. The breakthrough was that the hospital never checked for PRESSURE while doing a spinal tap!! Please make sure to ask what the pressure of the spinal fluid is in your spinal tap. Once that is established they will know to do a shunt. The lumbar shunt worked for me and continues to work for me after 10 years.
I no longer have headaches like the ones I had before my shunt. I have learned to diagnose my headaches. Are they tension headaches? Stress? Hunger headaches? Seasonal allergy headaches? I have learned to listen to my body. I go thru a checklist of items when trying to decide if my headaches are because of my shunt. If for what ever reason I feel that it's because of my shunt I go in for a check up. Like any thing that is manufactured, it can and will one day need to be replaced.
The lumbar shunt I have is composed of three pieces. The first tube goes up my spine, there there is a t section that connects the first tube to the second tube. This section has a little ball that rolls when I lay down and rolls back into positon when I stand up. This is what regulates the spinal fluid from draining. The second tube went around my midsection and drained into my stomach. BUT I kept having a lot of problems with this tube coiling and attaching to the inside of my belly. I could always tell when it did that coiling thing because it would bulge very noticeably. I had to go back twice to have them uncoil it but after the second time the surgeon decided to take out that tube and just leave enough of it to drain into my pelvic cavity. It's been working ever since.
It's late and I'm going to bed now, but if you have more questions let me know how I can help you.
Adriana
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