Aa
IIH/Pseudutumor
I had a lumbar puncture done to confirm my docs suspicions of IIH. They had me lay on my belly to measure my pressure so my doc said that she should've had me lay on my side for a more accurate reading. My reading was 45 but he said it is probably much higher. Ever since the lumbar puncture my ears keep popping whenever I swallow. It never goes away and it has been months now. What would cause this to happen? I never had this until that day and procedure. Also, in the recovery room while I was lying flat I noticed spinal fizz rising up the back of my neck over and over again. She had no idea what that was and neither did my Neuro Opthamologist. When I google it I keep seeing Chiari Malformation. This too causes increased spinal fluid and pressure in the head. So now I am wondering if I really have pseudotumor or chiari malformation. Anyone out there that can help me figure this out? I have seen so many doctors and no one takes the time. They rush you out cus they are so busy. I'm just so frustrated. I was on diamox and was so sick they switched me to topamax. Now I am so loopy and slow. I have so many symptoms but no answers. I keep getting the spinal fizz and don't know if the meds are even working if I really need surgery to open the passage way. Thanks for any help.
Intra-cranial-hyper-tension means in-skull-high-pressure. That is, you have too high pressure in your skull. This can be suspected by symptoms. It can be detected by looking in the eyes for papill edema. Higher pressure usually gives papill edema. It can be diagnosed also by measuring the opening pressure for the spinal tap, as in your case. 45 is too high.
Still, it does not say anything about why you have too high pressure. To find the cause it is necessary to do a MRI or ct scan of the brain. On the scan you can both see signs of high pressure, as well as the cause for it. So high pressure can also be diagnosed by imaging.
The most common cause of intracranial hypertension is chiari malformation. But there are others. Subdural hematoma, cerebral venous trombosis, hydrocephalus, tumors for example.
There are also cases where a patient has too high pressure but without a structural cause for it, that is without having chiari, tumors etc. In these cases the intracranial hypertension is called idiopathic, which means without cause.
Idiopathic intracranial hypertension (IIH) has also been called pseudotumor cerebri (false brain tumor) or benign intracranial hypertension (harmless intracranial hypertension).
Usually when someone has too high pressure in the skull the problem is fixed by fixing the underlying cause. In the case of IIH there is no underlying cause, at least not a known one or structural one. In stead the treatment must be focused on lowering the pressure anyway.
This can be done with drugs, for example diamox. It can alo be done with surgery, they put in a stent that lets the cerebrospinal fluid leak out and therefor makes the pressure drop. It can also be treated with repeated spinal taps. The more fluids that gets out the more the pressure will drop. Another good treatment in some cases is too start to live a healthy lifestyle. If a person with IIH is overweight for example the best treatment is usually to lose weight. When the person eats healthy, exercises and has lost weight the IIH usually dissapears on its own. It does not work for everybody though.
IIH as well as all other causes of high pressure in the skull must be treated or monitored. Otherwise there is a risk that the optical nerve gets damaged and the patient goes partially or fully blind. The eyes should be monitored regularly by a doctor as long as the disease persists.
Before the diagnosis of IIH is made two things must be proven. First that there is too high intracranial pressure, either by spinal tap, papill edema, or imaging. Secondly it must be proven that the intracranial hypertension is idiopathic, not caused by an underlying structural cause or malformation in the skull. This is done with imaging, ct scan or MRI.
The imaging is usually very good at detecting underlying causes. So if you have a imaging coming back negative for all causes you can be farely sure of your IIH diagnosis. There are however sometimes tricky cases. When is a chiari malformation really a chiari malformation. And if a chiari malformation is found, can we be sure that the symptoms come from the chiari and are not idiopathic? If the patient has had the chiari malformation all her life but just recently got intracranial hypertension, is the malformation the cause or not?
If you think that you are a border case and that your diagnosis was tricky to give, then it is always good to seek a second and third opinion on the matter. Otherwise you can feel rather safe with your diagnosis, since the scans are so good at detecting things. If the MRI says no tumors, then you really don't have any tumors, for example.
By the way, intracranial hypertension, high pressure in the skull, should not be confused with high blood pressure. It is not the same thing and they don't necessarily have anything to do with each other.
There is also a condition called intracranial hypotension, too low pressure in the skull. It gives other symptoms. And the hypotension in intracranial hypotension has nothing to do with low blood pressure, either.
My point is that there are a lot of names that are easy to mix up and that can cause confusion.
I tried to write this all as informative as I could. I hope it succeded and that people will find this explanation useful.:)
Best of luck!
Still, it does not say anything about why you have too high pressure. To find the cause it is necessary to do a MRI or ct scan of the brain. On the scan you can both see signs of high pressure, as well as the cause for it. So high pressure can also be diagnosed by imaging.
The most common cause of intracranial hypertension is chiari malformation. But there are others. Subdural hematoma, cerebral venous trombosis, hydrocephalus, tumors for example.
There are also cases where a patient has too high pressure but without a structural cause for it, that is without having chiari, tumors etc. In these cases the intracranial hypertension is called idiopathic, which means without cause.
Idiopathic intracranial hypertension (IIH) has also been called pseudotumor cerebri (false brain tumor) or benign intracranial hypertension (harmless intracranial hypertension).
Usually when someone has too high pressure in the skull the problem is fixed by fixing the underlying cause. In the case of IIH there is no underlying cause, at least not a known one or structural one. In stead the treatment must be focused on lowering the pressure anyway.
This can be done with drugs, for example diamox. It can alo be done with surgery, they put in a stent that lets the cerebrospinal fluid leak out and therefor makes the pressure drop. It can also be treated with repeated spinal taps. The more fluids that gets out the more the pressure will drop. Another good treatment in some cases is too start to live a healthy lifestyle. If a person with IIH is overweight for example the best treatment is usually to lose weight. When the person eats healthy, exercises and has lost weight the IIH usually dissapears on its own. It does not work for everybody though.
IIH as well as all other causes of high pressure in the skull must be treated or monitored. Otherwise there is a risk that the optical nerve gets damaged and the patient goes partially or fully blind. The eyes should be monitored regularly by a doctor as long as the disease persists.
Before the diagnosis of IIH is made two things must be proven. First that there is too high intracranial pressure, either by spinal tap, papill edema, or imaging. Secondly it must be proven that the intracranial hypertension is idiopathic, not caused by an underlying structural cause or malformation in the skull. This is done with imaging, ct scan or MRI.
The imaging is usually very good at detecting underlying causes. So if you have a imaging coming back negative for all causes you can be farely sure of your IIH diagnosis. There are however sometimes tricky cases. When is a chiari malformation really a chiari malformation. And if a chiari malformation is found, can we be sure that the symptoms come from the chiari and are not idiopathic? If the patient has had the chiari malformation all her life but just recently got intracranial hypertension, is the malformation the cause or not?
If you think that you are a border case and that your diagnosis was tricky to give, then it is always good to seek a second and third opinion on the matter. Otherwise you can feel rather safe with your diagnosis, since the scans are so good at detecting things. If the MRI says no tumors, then you really don't have any tumors, for example.
By the way, intracranial hypertension, high pressure in the skull, should not be confused with high blood pressure. It is not the same thing and they don't necessarily have anything to do with each other.
There is also a condition called intracranial hypotension, too low pressure in the skull. It gives other symptoms. And the hypotension in intracranial hypotension has nothing to do with low blood pressure, either.
My point is that there are a lot of names that are easy to mix up and that can cause confusion.
I tried to write this all as informative as I could. I hope it succeded and that people will find this explanation useful.:)
Best of luck!
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