Hi and I am so glad that you have found someone to help and that you were good enough to post and share this good and positive news!

Now, from what I understand, your csf is going up and down? Well I think this is all normal,except the too high bit!
Our csf rises and falls all day, producing some and then takes a kind of a break.
That's why the timing of an lp is important.
It should, ideally be done around mid day, when it is , or should be at its highest. This will give you the most accurate reading for your opening pressure.
Which as you have found out, your op is way to high at 32.

Also, in most of us, but with exceptions, our csf is replaced after an lp with in hours or days. I can get about 7-10 hours relief from a lp.
I have since been told by a dr who knows all about shunts etc,that if you do not get some longer relief from an lp, you should think twice about shunting. This is the way that the London hospitals are going with their thinking.

My next question is, why have you had two lps so close together?
Is your neuro doing therapeutic lps?
I sure hope not and if they are , stop them. Repeat lps are so dangerous! They high risk of infection, some thing being damaged during the procedure, the risk of scar tissue and the chance of developing Chiari Malformation.

So a stop to those please!

As for shunts, personally I would only ever consider a VP shunt.
Don't like any thing about LP ones and you will have to adapt over to a VP in time.
I can tell you more but it would be easier if you posted the questions that are on your mind,ok? Cath

Hi and I am so glad that you have found someone to help and that you were good enough to post and share this good and positive news!

Now, from what I understand, your csf is going up and down? Well I think this is all normal,except the too high bit!
Our csf rises and falls all day, producing some and then takes a kind of a break.
That's why the timing of an lp is important.
It should, ideally be done around mid day, when it is , or should be at its highest. This will give you the most accurate reading for your opening pressure.
Which as you have found out, your op is way to high at 32.

Also, in most of us, but with exceptions, our csf is replaced after an lp with in hours or days. I can get about 7-10 hours relief from a lp.
I have since been told by a dr who knows all about shunts etc,that if you do not get some longer relief from an lp, you should think twice about shunting. This is the way that the London hospitals are going with their thinking.

My next question is, why have you had two lps so close together?
Is your neuro doing therapeutic lps?
I sure hope not and if they are , stop them. Repeat lps are so dangerous! They high risk of infection, some thing being damaged during the procedure, the risk of scar tissue and the chance of developing Chiari Malformation.

So a stop to those please!

As for shunts, personally I would only ever consider a VP shunt.
Don't like any thing about LP ones and you will have to adapt over to a VP in time.
I can tell you more but it would be easier if you posted the questions that are on your mind,ok? Cath

Hi and I am so glad that you have found someone to help and that you were good enough to post and share this good and positive news!

Now, from what I understand, your csf is going up and down? Well I think this is all normal,except the too high bit!
Our csf rises and falls all day, producing some and then takes a kind of a break.
That's why the timing of an lp is important.
It should, ideally be done around mid day, when it is , or should be at its highest. This will give you the most accurate reading for your opening pressure.
Which as you have found out, your op is way to high at 32.

Also, in most of us, but with exceptions, our csf is replaced after an lp with in hours or days. I can get about 7-10 hours relief from a lp.
I have since been told by a dr who knows all about shunts etc,that if you do not get some longer relief from an lp, you should think twice about shunting. This is the way that the London hospitals are going with their thinking.

My next question is, why have you had two lps so close together?
Is your neuro doing therapeutic lps?
I sure hope not and if they are , stop them. Repeat lps are so dangerous! They high risk of infection, some thing being damaged during the procedure, the risk of scar tissue and the chance of developing Chiari Malformation.

So a stop to those please!

As for shunts, personally I would only ever consider a VP shunt.
Don't like any thing about LP ones and you will have to adapt over to a VP in time.
I can tell you more but it would be easier if you posted the questions that are on your mind,ok? Cath

Hi Cathy,
You helped me before when had questions before about my chiari & sent me to medhelp.org.
The Dr's aren't focusing on that didn't think it was worth bothering. So, I'm have been experiencing daily headaches for almost 2 years now, with occasional breaks. My pain dr has noticed that movement is a pretty powerful side effect that comes with my ha's. Third caused him to question my pressure & he was rt to do so.
As far as shunts, I've seen many problems posted on here such as infections & having top have them re-done & I also remember you having a pretty bad ha after having one of yours put in if I'm not mistaking (maybe 12/11)?;) Wow good memory!:)

You have already been diagnosed with a chiari right? When was your last MRI and what did the report read?

In your situation best to stick with Diamox fight to make it work for you because shunts can make your herniation worse. Herniation explains the HA and fluxuations in CSF volume because the chiari is an obstruction. Pain gets worse as the day progresses? What about physical activity?

Doctors who don't treat or study your condition always do the same thing, lots of LP's, CT or MRI, diamox just long enough to say its not enough then shunt after shunt after shunt finally shrug their shoulders and tell you to consult your neurologist or someone else.

If dr orders another MRI ask if it can be upright and/or a CSF flow study would provide valuable information. I don't know how much insurance comes into play in your case, but drs at home can help with referral appt. Dr. F, info below is a specialist with CSF issues, he treats adults too.

Illinios? Dr. David Frim
University of Chicago Children's Hospital
Pediatric Neurosurgery
5841 S. Maryland Avenue
Chicago, IL 60637
Office Phone: (773) 702-2475
Office Fax: (773) 702-5234

PS 750 is very low dose of Diamox. Are you taking the tablets or xr capsules? The capsules will treat you better-sorry if you already know all this. I just get going and can't stop! Hope you are having a decent day.

You have already been diagnosed with a chiari right? When was your last MRI and what did the report read?

In your situation best to stick with Diamox fight to make it work for you because shunts can make your herniation worse. Herniation explains the HA and fluxuations in CSF volume because the chiari is an obstruction. Pain gets worse as the day progresses? What about physical activity?

Doctors who don't treat or study your condition always do the same thing, lots of LP's, CT or MRI, diamox just long enough to say its not enough then shunt after shunt after shunt finally shrug their shoulders and tell you to consult your neurologist or someone else.

If dr orders another MRI ask if it can be upright and/or a CSF flow study would provide valuable information. I don't know how much insurance comes into play in your case, but drs at home can help with referral appt. Dr. F, info below is a specialist with CSF issues, he treats adults too.

Illinios? Dr. David Frim
University of Chicago Children's Hospital
Pediatric Neurosurgery
5841 S. Maryland Avenue
Chicago, IL 60637
Office Phone: (773) 702-2475
Office Fax: (773) 702-5234

PS 750 is very low dose of Diamox. Are you taking the tablets or xr capsules? The capsules will treat you better-sorry if you already know all this. I just get going and can't stop! Hope you are having a decent day.

PS No more LP's unless there is fear of meningitis! Not good for you, they have plenty of readings.

PS No more LP's unless there is fear of meningitis! Not good for you, they have plenty of readings.

PS No more LP's unless there is fear of meningitis! Not good for you, they have plenty of readings.

Hi noneareleft & thanks for replying! I'm now on 1000 mg's of the capsules. My last mri was this summer & it was 1-2 mm. I'm not exactly sure what you mean by physical activity. I'm exhausted constantly, always dizzy & my gossips always blurry. I can't tolerate bright lights or loud noises. Besides diamox I'm also on topamax & other meds but the between the 2 my memory & cognition & speech is all f@#$ed up.
I'm in the ER for pain relief atleast 2 x's a wk & have been for about 2 years now. They keep saying that if my vision changes with the headaches theres a chance of blindness. & my neuro:( has them doing the lp's. I don't like them because I've have had 1-2 many spinal ha. Should I still refuse them? Also have you ever felt movement in your head? I have been since before the last lp & it ifs pretty scary.

Dang! 2-3 times per week, are they at least treating your pain while there and trying different meds inbetween? Pain is something the ER is supposed to treat.

YES! Just say NO to any more LP's. Explain you have a connective tissue disorder with ICH and ACM and each tap causes more trouble. You can copy some info from net to take or let them go look it up. Its the only thing they know to do. Once they understand you are a documented Zebra it should be OK. No need to argue because you still need them to help you with pain control.

There are earlier posts about activities to avoid and physical restrictions, if you can't find them maybe I can. Anything that causes you to strain is bad including constipation! hope that made you laugh, and yelling, singing, coughing, vomiting, are all valsalva maneuvers. No heavy lifting, pushing or too much time with your neck cocked. No deep swimming, roller coasters, horseback riding...protect your noggin and neck. Gentle turns, stopping and starting when driving or riding. You will feel better driving and more if you wear a collar for support. Reaching up as in painting or hanging things, not good either.

I don't know why you are taking topomax with diamox because its an additional risk for kidney stones.

Drink bottled or filterd water and never take doxycycline antibiotics. Check all medications for increased intracranial pressure side effect or contraindicated because drs don't. Tramadol is another one you shouldn't take.

You are taking potassium supplement right? If not you need to get a script, there just aren't enough bananas and brussels sprouts.

I'll PM you tomorrow.

Hey! Im sorry that your going through all of this! I went through the same a few years ago. I was put on high dosages of Diamox but I could not tolerate the side effects. I was so tired that I could not walk around the grocery store. In January of 2010 I had a VP shunt put in. I was terrified of having brain surgery but it was that or go blind. My surgery went perfectly and so far my shunt has been functioning well. I do not have the adjustable kind, I have the old fashion one setting kind. I dont have insurance so they would not place the adjustable in me! At first you will have bad low pressure headaches, you will have to lay down for 1 to 2 weeks. You will also experience pain in your lower abdomen and pelvic area. That is the shunt cord settling in. It hurts bad at first. You will have to get use to the shunt being there but its easier than it sounds. After you recover from the surgery you will learn to live with having a shunt and its actually easy! I rarely notice my shunt being there. I still have sharp pain in my stomach, but thats just the cord "whacking around". For me the choice between living on Diamox and having a shunt was easy! Surgery is a scary thing to face, but going blind is even scarier!
Good luck and I hope and pray that you find some relief!
:)
Ashley:)

Hey! Im sorry that your going through all of this! I went through the same a few years ago. I was put on high dosages of Diamox but I could not tolerate the side effects. I was so tired that I could not walk around the grocery store. In January of 2010 I had a VP shunt put in. I was terrified of having brain surgery but it was that or go blind. My surgery went perfectly and so far my shunt has been functioning well. I do not have the adjustable kind, I have the old fashion one setting kind. I dont have insurance so they would not place the adjustable in me! At first you will have bad low pressure headaches, you will have to lay down for 1 to 2 weeks. You will also experience pain in your lower abdomen and pelvic area. That is the shunt cord settling in. It hurts bad at first. You will have to get use to the shunt being there but its easier than it sounds. After you recover from the surgery you will learn to live with having a shunt and its actually easy! I rarely notice my shunt being there. I still have sharp pain in my stomach, but thats just the cord "whacking around". For me the choice between living on Diamox and having a shunt was easy! Surgery is a scary thing to face, but going blind is even scarier!
Good luck and I hope and pray that you find some relief!
:)
Ashley:)

Hey! Im sorry that your going through all of this! I went through the same a few years ago. I was put on high dosages of Diamox but I could not tolerate the side effects. I was so tired that I could not walk around the grocery store. In January of 2010 I had a VP shunt put in. I was terrified of having brain surgery but it was that or go blind. My surgery went perfectly and so far my shunt has been functioning well. I do not have the adjustable kind, I have the old fashion one setting kind. I dont have insurance so they would not place the adjustable in me! At first you will have bad low pressure headaches, you will have to lay down for 1 to 2 weeks. You will also experience pain in your lower abdomen and pelvic area. That is the shunt cord settling in. It hurts bad at first. You will have to get use to the shunt being there but its easier than it sounds. After you recover from the surgery you will learn to live with having a shunt and its actually easy! I rarely notice my shunt being there. I still have sharp pain in my stomach, but thats just the cord "whacking around". For me the choice between living on Diamox and having a shunt was easy! Surgery is a scary thing to face, but going blind is even scarier!
Good luck and I hope and pray that you find some relief!
:)
Ashley:)

Hey! Im sorry that your going through all of this! I went through the same a few years ago. I was put on high dosages of Diamox but I could not tolerate the side effects. I was so tired that I could not walk around the grocery store. In January of 2010 I had a VP shunt put in. I was terrified of having brain surgery but it was that or go blind. My surgery went perfectly and so far my shunt has been functioning well. I do not have the adjustable kind, I have the old fashion one setting kind. I dont have insurance so they would not place the adjustable in me! At first you will have bad low pressure headaches, you will have to lay down for 1 to 2 weeks. You will also experience pain in your lower abdomen and pelvic area. That is the shunt cord settling in. It hurts bad at first. You will have to get use to the shunt being there but its easier than it sounds. After you recover from the surgery you will learn to live with having a shunt and its actually easy! I rarely notice my shunt being there. I still have sharp pain in my stomach, but thats just the cord "whacking around". For me the choice between living on Diamox and having a shunt was easy! Surgery is a scary thing to face, but going blind is even scarier!
Good luck and I hope and pray that you find some relief!
:)
Ashley:)