Chiari, Worsening symptoms..

[Stroud5393]

This morning I woke up up my neck really sore and feels on fire and so does the back of my head. The throbbing pressure isn’t as bad first thing when I’m in bed. Soon as I get up everything gets worse... Is this throbbing head pressure that is in time with my heart beat a chiari thing? Please someone respond.

[selmaS]

Hi...have you had POTS ruled out? HHI?.....Chiari can come with other conditions, and until all testing rules these others out it is near impossible to say what is causing which symptoms. OR how to treat them and which one first....

[Stroud5393]

HHI? How do you rule out pots? I know going from lying to sitting to standing my blood pressure doesn’t drop at all.

[selmaS]

They do a tilt table test for POTS. HHI ...intercranial hypertension....which I believe you felt you might have.....until things are ruled out, you have to consider everything.

[Stroud5393]

Well I did have my eyes checked and my optic nerves looked good. I read that they become damaged if you have intracranial hypertension.

[selmaS]

Well then it could be Chiari, EDS and a few other things like your activities, or the weather......

[Stroud5393]

I got discharged last night I still worry about having ICP... I did read I had moderate disk bulging in c-6 and c-7 maybe that could be causing the headaches and neck pain? It wouldn't really explain the ear and fullness in the back of my head though.. I just really wonder whats causing everything if not chiari. Is it less likely I have ICP with a clear eye exam?  

[Stroud5393]

Well I saw a neurosurgeon about they scans I had yesterday and he said it’s a small malformation at around 5mm. He said he knows quite about chiari and he didn’t see any kind of blockage or anything and he said he didn’t think chiari was causing my symptoms... Which I don’t really believe that but guess I’m gonna have to investigate other causes. I did get a eye exam here at the hospital awhile ago and their was ok swelling of my optic nerves which is good but doesn’t rule out ICP..

[Stroud5393]

I meant their was no swelling of the optic nerves.

[KerriC1]

I did have burning pain in my neck and back of head. And the shoulder blades. And the ringing in the ears (which I always have but gets intense with the pressure) is very high pitched and it’s literally all I can hear along with a helicopter sound thumping nonstop. Very frustrating.

I wouldn’t let anyone jump to inserting a shunt as those can cause more issues than they help sometimes. It was proposed for me but was a last resort. Most times the decompression surgery can help and sometimes the surgery can cause high ICP. Which is what happened to me after surgery no 1.

[Stroud5393]

I really think it’s ICP just from research and look at other people’s mris. I noticed my optic stuff is being smushed on the scan and I’ve heard that’s characteristic for ICP

[Stroud5393]

Did you also by chance loaves liquid sounds in the head like the sound water makes going through skimmed water hose?

[Stroud5393]

Kinked I mean

[KerriC1]

I don’t know if I would call it liquid sounds but I have a whooshing feeling like my brain is swimming. Kinda hard to describe

[Stroud5393]

Sounds like they are gonna try to send me home without a spinal :(. I could lose my eye sight or worse... Just don’t get why they can’t do it.. I’m starting to get the ringing in my ears now..

[KerriC1]

Sometimes things happen for reasons we can’t explain and can be a blessing in disguise. Maybe the person performing the LP could’ve done more harm than good. Have you ever had vision field testings or your eyes dilated? They can see high pressure that way also. And they will look for papilledema which is swelling of the optic nerve caused by high ICP. Maybe you could go that route

[Stroud5393]

Yes it’s been over a year when I had the eye test done but I probably need another one. Yeah you are right about everything happening for a reason just wish I could understand it..

[KerriC1]

It would prob be a good idea to get those testings. Might answer more questions thank you think. And I’m still searching for my reasons also butteying to power through all the madness chiari causes.

[Stroud5393]

Kerri thank you for all your advice I appreciate it more than you know

[KerriC1]

I think we can all relate to the fear and confusion when you’re new to chiari. It takes time and I still have questions. But just know that we are all here for each other. No one can understand more than a fellow chiarian

No need to thank me, but you’re very welcome

[KerriC1]

Without the proper testing it’s haed to say what it is or isn’t. I can only go by symptoms that I’ve had. I had throbbing pressure headaches that pulsed loudly and painfully inside my head. Couldn’t move my head even slightly without it. I literally heard my heartbeat every time I moved and the ringing in the ears was deafening. Also I had visual disturbances including bright flashes of light and black spots that caused loss of vision. I had many visual field tests and had significant abnormalities show.

If you proceed with an LP, be sure they are aware of your chiari because drawing too quickly can cause the brain tonsils to be pulled down further causing worsening symptoms. Also be aware of the chance of spinal fluid leak from this procedure. It happened to me and had to have a blood patch to seal it

[Stroud5393]

Thank you Kerri. I guess it could be ICP because I do have the throbbing pressure when I stand and stuff. Did you ever have burning pain in the back of your head and neck? Was the ringing in your ears high or low pitched? I don’t really have a lot of ringing in the ears just more of a throbbing pressure that goes with my heartbeat.. Just seems like my symptoms have progressed a bunch in the past month

[KerriC1]

Hydro and high ICP are similar but different things. Hydro is fluid inside the brain itself and high ICP is fluid buildup on top of the brain. I have high ICP and although miserable I’ve not heard of it causing death. It can lead to permanent blindness if not treated due to pressure increase on the optic nerve. There is a mad that is used to treat it called diamox. It has nasty side effects but it reduces the amount of fluid. I was on it for well over a year.

Hoping you get some answers soon

[Stroud5393]

I’m suppose to hear something from the neurosurgeon about the mri results and see what he wants to go. Surely he wouldn’t wanna do emergency surgery?

[Stroud5393]

I don’t know why I’m so terrified of surgery.. I’m scared I won’t wake back up or I’ll have a complication or something..

[Stroud5393]

Does this sound like ICP??