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DETRMND2LOSE's Photo DETRMND2LOSE SparkPoints: (18,806)
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6/13/14 11:16 A

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At my last neurology appointment my Dr. told me: "I am no longer going to do therapeutic LP's on you if you don't lose weight. If you don't have any LP's done you will need to get a shunt."
So let me get this straight... I go in twice a year and have LP's done. The effects last months for me. I am not on medication because I can't tolerate the side effects. Instead of doing something that is less invasive, and works, you would rather me have surgery for something that only works part of the time?!?!?
Wow...just wow.


Carrie

~ Leader - Intracranial Hypertension Support ~

"I wish you could see I'm saying 'yes' to me; not 'no' to you." Anonymous

"You're braver than you believe, and stronger than you seem, and smarter than you think."

-Christopher Robin to Pooh


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DETRMND2LOSE's Photo DETRMND2LOSE SparkPoints: (18,806)
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6/23/13 11:00 A

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From experience I'm guessing the radiologist was talking specifically about the muscle/skin of your back. When people get LP's done, and many of them, the tissue in that area becomes scarred. It becomes hard for the dr's to insert the needle. The consistency of your muscles and how much fat tissue on the lower back also makes it hard for them to get the needle in properly. Not knowing the full conversation I'm betting that's what the radiologist was referring to. They are both probably right in their individual assessments emoticon


Carrie

~ Leader - Intracranial Hypertension Support ~

"I wish you could see I'm saying 'yes' to me; not 'no' to you." Anonymous

"You're braver than you believe, and stronger than you seem, and smarter than you think."

-Christopher Robin to Pooh


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DRAWNTHISWAY's Photo DRAWNTHISWAY Posts: 3,004
6/23/13 8:23 A

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I have an MRI report that notes that in my lumbar region I have degenerating discs. When I had my LP last week the radiologist said he rarely gets to see "such a young healthy back" so which do I have, one thatis degenerating or one that is young and healthy?!

Mary,
mom to 4 beautiful children that deserve a healthy and active mother



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5/18/13 10:50 A

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This one is somewhat more of a reality check for me...

In addition to IH I have a kidney disease. My check-up last week was not good. After going over all the things that need to be done and what I need to do I said to my doctor "It's all good, I will get it handled". He looked at me and said "you don't have to be so tough, it's not all good, in fact it sucks, and your allowed to say it sucks". He is right. I ALWAYS put on this front when I am around people. It was just kind of an eye opener to the fact I'm allowed to feel emotions and let others see them. My nephrologist is a good doctor, I have always liked him.


Carrie

~ Leader - Intracranial Hypertension Support ~

"I wish you could see I'm saying 'yes' to me; not 'no' to you." Anonymous

"You're braver than you believe, and stronger than you seem, and smarter than you think."

-Christopher Robin to Pooh


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DETRMND2LOSE's Photo DETRMND2LOSE SparkPoints: (18,806)
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5/4/13 10:24 A

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I have someone in my life who consistently says to me... "Ugh, I have one of YOUR headaches today".

OK, first off... NO, NO YOU DON'T. You have a migraine. I do have migraines, in addition to IH, so I know that is what he is referring to. But I think what irks me the most is that every single time he says this I always ask him "Which type of headache are you referring to: my IH disease or migraines". And he always says, "you know.. the bad one's". Hahaha, if he only knew. I don't know why it bugs me so much but it does.


Carrie

~ Leader - Intracranial Hypertension Support ~

"I wish you could see I'm saying 'yes' to me; not 'no' to you." Anonymous

"You're braver than you believe, and stronger than you seem, and smarter than you think."

-Christopher Robin to Pooh


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DRAWNTHISWAY's Photo DRAWNTHISWAY Posts: 3,004
4/30/13 9:39 P

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At my last appt, I was asked, " why aren't you losing weight on the topamax you are taking?"

How am I supposed to know that. i don't drink soda. Most my food is unprocessed. I eat less than my teen daughter, who weighs significantly less than me, and supposedly my tsh levels are "normal"....

Mary,
mom to 4 beautiful children that deserve a healthy and active mother



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SEPTEMBERWINNA's Photo SEPTEMBERWINNA Posts: 80
4/30/13 5:31 P

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Yeah. I was told to lose 5kgs then when I did I was told to lose 5 more. After losing 30kgs I was told I would need to weigh 70kgs for it to go away. Why all the lies?

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DRAWNTHISWAY's Photo DRAWNTHISWAY Posts: 3,004
4/30/13 2:31 P

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My favorite has to be, "Studies show if you just lose 20% of your body weight all syptoms of IH will dissipate."

Mary,
mom to 4 beautiful children that deserve a healthy and active mother



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DETRMND2LOSE's Photo DETRMND2LOSE SparkPoints: (18,806)
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4/27/13 8:39 P

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Septemberwinna - my neuro said that to me to. I couldn't believe it! Said the same thing when I asked how certain meds would be, "oh, you can google them and get the full list of what to expect".

Drawnthisway - wow...I really don't even know what to say. Foods out of a box for better nutrition? Aren't those the worst kind for us? What was he thinking?


Carrie

~ Leader - Intracranial Hypertension Support ~

"I wish you could see I'm saying 'yes' to me; not 'no' to you." Anonymous

"You're braver than you believe, and stronger than you seem, and smarter than you think."

-Christopher Robin to Pooh


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SEPTEMBERWINNA's Photo SEPTEMBERWINNA Posts: 80
4/27/13 5:34 A

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Go home and look up IH on the internet to get some answers.?? Why did I pay you 250 dollars again??

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DRAWNTHISWAY's Photo DRAWNTHISWAY Posts: 3,004
4/26/13 10:07 P

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You should trying eating more foods out of a box to have better nutrition so you can lose weight to resolve your IH. Said to me by a nuero...

Edited by: DRAWNTHISWAY at: 4/26/2013 (22:08)
Mary,
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DETRMND2LOSE's Photo DETRMND2LOSE SparkPoints: (18,806)
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4/26/13 9:50 P

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It always amazes me what some people, and doctor's, will say regarding someone else's disease. Some of those comments can be humorous, some can be very hurtful and most are just ignorant due to not knowing the disease. With IH/PTC I know we have all heard a bunch of different things people say or their opinions on how we should act. Feel free to drop off those comments here and let us all laugh at the silly things and help support you through the harsh one's.


Carrie

~ Leader - Intracranial Hypertension Support ~

"I wish you could see I'm saying 'yes' to me; not 'no' to you." Anonymous

"You're braver than you believe, and stronger than you seem, and smarter than you think."

-Christopher Robin to Pooh


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