Could it be Chiari?

[tkilburn]

Ok so back in 1998 I was diagnosed with Pseudotumor Cerebri and have been on Diamox ever since. I haven't had any more issues with it. Been seeing a opto (eye doc) every year. Well back in 2009 I had my third and final baby. Then shortly there after I started to have some pretty bad headaches. Didn't think to much of them just thought it was stress from having a baby and what not. So about 5 months ago I started to having this ringing in my ear. It really isn't a ringing but a whooshing sound in beat with my heartbeat. It is driving me nuts. So I went to the doctor and he said I had some fluid in my ear and to try and chew gum and work it out. He said if it wasn't gone in 3 months to come back. So after about 2.5 months I started to get these horrible headaches. The worst I have ever had even worse then the headaches with PTC. But these were different. These were all in the back of my head right at the base of my skull. And they would get really bad if I coughed, sneezed or laid on the floor on my tummy. They would just be almost unbareable for about a minute or so then calm down and just be a dull ache for hours. So I decided to go back to the doc because my ear hadn't gotten any better either. Well he immediately sent me for an MRI and of course it showed nothing. So he prescribed me Immotex and said to see if that helped. Well the headaches have calmed down some but are still there sometimes. But the ear has gotten worse. So he sent me to an ENT and of course he said he didn't see anything but thinks it is related to my jaw bone. So I have purchased a mouth guard and of course no change. So been doing some research on the internet and saw that a symptom of PTC could be the ringing in your ears. So I decided to go see my eye doc to see if there was a change with my PTC. He said that my optic nerve might look a little swollen so he sent me to do visual field test. That didn't show anything either. He said that all seemed to be normal with my PTC. So I have been doing more research on the internet and have come across Chiari. Well I really feel like I could have this. I remember back when I was diagnosed with PTC that my neuro said something to the fact that my brain sat lower on my spinal cord but it wasn't anything to worry about at the time. I guess I am wondering if it is worth my while to go see another neuro and see what they say. I just don't want to waste the time and money because my insurance *****. I just don't know if this is something I can live with. I was hoping you all could give me some advice as to if you think this could be a possible solution to my problems. My symptoms are serve headaches, ringing in the ears, stiff neck and back and also a lot of stomach cramps and pain. Let me know what you think.

[selmaS]

Chiari symptoms do cycle...and the HA's u had could have been chiari...and a CSF blockage leads to , too much CSF which can be called PTC.....and the excess fluid can force the tonsils down further onto the brain stem.

Natural childbirth and all the pushing can also cause issues for those with chiari as can having an epidural.....I had one and was in the hospital for 5 days with a HA from a CSF leak.....

I always had symptoms, but could not find a dr that was able to dx me.....none ordered an MRI so I am sure that plays a big part...but, they really didn't listen and wanted to convince me it was anxiety and stress....

In going to a new dr I did the same, waited to see what he was going to say...and when he ignored my chiari I knew he was not the right dr for me.

Good luck and do keep us posted

"selma"

[tkilburn]

Just curious as to what your symptoms were and how you discovered that you had chiari. If you wouldn't mind sharing with me. I am trying to decide if I find a neurologist that I feel comfortable going to if I will mention chiari or if I will just let them see if they find it on their own. I don't want to come across as one of those psycho people that self diagnose on the internet.

[tkilburn]

Yes back in 1998 I had an MRI done and they said I had what was called a Pseudotumor Cerebri. So they immediately did a spinal tap. And said my pressure was extremely high. So even if this happened back in 1998 could it was caused the tonsils to herinate more? Just seems like a long time ago and to not have any symptoms until now. I feel like having a baby and the whole epidural caused this to happen. They ended up saying that my epidural with my first child was the cause of the PTC to form. So I don't know. So could the PTC really just be a chiari malformation instead? I know I have read that the two can be related and their symptoms are very similar so I guess I really could have had a chiari malformation instead of the PTC. Anyways thanks for all your help. I am so glad I found this sight. And will certainly keep you guys up to date as to what I find out.

[selmaS]

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

This link is of drs that have treated chiari for the members here...u still need to research the drs on the list to find the right dr for u.

U r very lucky not to need a shunt, and I wonder just how much  of a blockage u have and if that is y it appears u have PTC......

All u can do is try to get in touch with the facility that did the studies in 1998 and ask...they may be on microfilm and may take a while and may even cost something to retrieve, but it should be well worth it.

"selma"

[dkdean]

Certainly sounds like many of the symptoms I have with chiari...You prob can still get the 1998 MRI's--but I'd find the NS and go from there.  The NS will order new MRI's (prob with CINE to measure the flow)--also, to dx the pseudotumor--did they do a lumbar punct to dx that?  Just wondering if the LP caused the tonsils to herniate more.  There is a list on here with drs people have seen...that would be a good first step.  Welcome :)

[tkilburn]

Thanks for your reply Selma. I haven't had to have a shunt placed. I did very well on the diamox and it stayed under control so the shunt was necessary. Thank goodness. I have been taking Naproxen for the pain and a muscle relaxer. When the ringing in my ears started I wasn't taking anything other than my diamox. Now I will say I have been on lisinopril since the birth of my son because I had preclampsia with him. My BP sky rocketed after delivery. But it was been control since then. Just a little high off the medicine. Last time I was off of it it was 142/83. So nothing that is scarey by any means.

So I guess my next question would be how to go about finding a NS that specializes in chiari? Also do you think I can still get my MRI's from 1998?

[selmaS]

Hi and welcome to the Chiari forum.

It does sound like u may have had the chiari from the start....chiari with a CSF blockage can cause IIH or PTC...which ever term u  use....

Have u had surgery ...had a shunt placed?

Finding a true chiari NS would be ur next step as well as obtaining the orig MRI's as well as the reports for comparison.

To start off see a chiari NL and get a dx......once u have that dx....it will be easier to get in to a NS.

May I ask do u take NSAIDS for pain...they can add to the ringing in the ears.

Glad to have u join us here, so sorry for the reasons that brought u.

"selma"

[tkilburn]

I just thought of this but I wanted to add it too. I have been getting this wave flashing lights in my vision. I don't know really how to describe them but the other night I was just sitting watching tv and out of the corner of my eye I start seeing these blurry strobbing lights. Its like really fast waves. I started to kind of freak out but I just closed my eyes and relaxed and they evertually went away. Also when I get my headaches I have a lot of pressure in my head. All over from behind my eyes to the back of my head. Sometimes I feel like my head is going to burst. Just wanted to add this to my post and couldn't figure out how to edit it.

Thanks again :)