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Possible Chiari question...
Ok I found out I have pseudotumor cerebri oct 10th...opening pressure was 32 then again on veterans day and it was 29. Doc put me on diamox, not helping at all. Ive had a few mri scans of my head and spine all of which neuro said no chiari. Also sent my files to the chiari Institute in ny and they said no chiari. My issue is this to me my tonsils look herniated or low lying but I cant tell where exactly I should be looking on the mri. My main symptoms are head pressure worse when up and around, straining, too emotional...lying down om pillows relieve it some. I dont take pain meds at all. Im wondering should I still approach chiari or pseudotumor? Does anyone here have worse pressure headaches when sitting up vs lying down. I also get pressure in my neck and spine too.
COMMUNITY LEADER
Have they ruled out Ehelrs-Danlos? Those with disk issues should look to see y the disks shift, and the connective tissues holding them in place may be a reason....and EDS can cause many of the same symptoms as chiari.
Thanks so much for the comment. I do have bilateral transverse sinus stenosis and have sent my files to john hopkins for review just waiting to hear back from them also. Yes I am terrified as this whole thing consumes me everyday. I went to the neuro yesterday to talk about these headaches, and my concern for chiari, they looked again and said no but I do have 3 bad disks in my neck which could cause bad headaches too. So I may have cervogenical headaches and iih. So confusing cause diamox is not working for me. Ive been missing out on life for 1 year now because of head and neck pain...
I in no way want chiari, but I do want relief...
I in no way want chiari, but I do want relief...
Hi Smiley :-)
You must be pretty scared right about now. While I know you didn't want to be told you have Pseudo Cerebri, believe me it can be treated. It might help to consider the following;
1. You have had some of the best Neuro evaluations in the world (Chiari Institute of NY), tell you it's not Chiari, along with multiple Radiologist and other NL, NS. They are all well trained to know this. At this point, believe it.
2. Focus your attention on what you know is true. You have Increased Intracranial Pressure known as Pseudo Cerebri. This is not Chiari. It does have some similar symptoms, which is why it is a differential diagnosis. However, if you take a closer look at the symptoms I think you will see the difference. Here the eyes play a key role. You need to get an OCT eye exam ASAP. This can confirm your diagnosis as it checks for swelling or edema around your Optical nerves known as Paplidema. This condition will most likely lead to blindness if untreated. It is most common among women who are over weight, child baring age. The most common cause of this condition in a narrowing of a vein in your transverse sinus cavity in your brain.
3. What you can do.... Is look at Johns Hopkins Neuro Intervention Dep. They have a new, effective treatment for your condition where they place a stent in the vein of the Transverse Sinus through a catheter. It works!
Good luck to you Dear. Consider yourself lucky not to have Chiari, trust me :-) Lisa
You must be pretty scared right about now. While I know you didn't want to be told you have Pseudo Cerebri, believe me it can be treated. It might help to consider the following;
1. You have had some of the best Neuro evaluations in the world (Chiari Institute of NY), tell you it's not Chiari, along with multiple Radiologist and other NL, NS. They are all well trained to know this. At this point, believe it.
2. Focus your attention on what you know is true. You have Increased Intracranial Pressure known as Pseudo Cerebri. This is not Chiari. It does have some similar symptoms, which is why it is a differential diagnosis. However, if you take a closer look at the symptoms I think you will see the difference. Here the eyes play a key role. You need to get an OCT eye exam ASAP. This can confirm your diagnosis as it checks for swelling or edema around your Optical nerves known as Paplidema. This condition will most likely lead to blindness if untreated. It is most common among women who are over weight, child baring age. The most common cause of this condition in a narrowing of a vein in your transverse sinus cavity in your brain.
3. What you can do.... Is look at Johns Hopkins Neuro Intervention Dep. They have a new, effective treatment for your condition where they place a stent in the vein of the Transverse Sinus through a catheter. It works!
Good luck to you Dear. Consider yourself lucky not to have Chiari, trust me :-) Lisa
Thanks so much. This is great info. I've sent my mri scans to Dr.Rosner in nc for review and I heard from him today that my files and a report are on the way back to me. So I guess I just have to wait now. Very anxious to hear his views on whether I have chiari or not.
COMMUNITY LEADER
Hi....well other then the typical HA's, vision issues, balance, brain fog, heart palps, I had drop attacks....one in '07 that left me with injuries that required surgery....that put me back on my mission to get to the bottom of it all....I had drop attacks since I was around 11...but the one in '07 I was injured and when I was younger there were no MRI's to have done and back then they just made an "educated" guess...and we were told growing pains...etc...
I also had breathing issues and was a mouth breather,still am at times...more now out of habit then the feeling I would suffocate breathing thru my nose, ....I had my tonsils and adenoids removed at age 7...which did not help my breathing....I can breathe thru my nose now post op with out the fear or feeling I would pass out from too little air....
My attention span was short as I had diff reading...retaining what I read....
I also found doing certain physical activities left me feeling odd...I always wondered if even one felt like this y do they like that activity so much....
Strain HS's ....always tired, and I could feel tremors in my arms and legs....from age 11 I would get awful leg cramps from walking ....running etc...so always leg issues.
Major IBS issues again from at least 9 or 10 that it really affected me getting somewhere(school) on time...but earlier memories of teachers coming into the restroom to see if I was ok....lol....
Over the yrs I feel we all adjust and avoid things that seem to cause more pains...so I raised my monitor for my comp at work so I was looking straight ahead,...yrs b4 my DX and Drs telling me to do just that....we know what hurts and do things to avoid the pains....
With the instability which I know is odd, I found that the exercises I did post op from the decompression my neck muscles got stronger and are not as much an issue as they were b4...most times it can get worse....mayb I am fooling myself as I did not want another surgery so I did those exercises several times a day.....
I hope that helps answer ur question....and was not TMI
I see you had craniocervical instability...and flow blockage, what were your main symptoms? I have to post my mri pics from the computer. I swear I think I have cci...
Sure I'll post one now...im lost...the mri was aug 28th...I sent it to them in sept along with a entire spine mri and a ct scan, of the brain too...ive been on diamox for about 5 weeks now...about to change my pic now...
COMMUNITY LEADER
Hmmmm this is odd...not sure what is going on....how current is the brain MRI u sent to TCI?
Can u post a pic of one of ur MRI's into ur profile page?
It is possible to have PTC with out Chiari....this is when ur body over produces CSF or ur body can not absorb it fast enuff.....DIAMOX may help over time....how long are u on it?
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