Chiari Malformation Problems Yet, or something worse????

[Ponyta]

I had surgery done in 2007, in order to cure a 13mm chiari malformation. It cured the severe headaches I got when I laughed, however, it never cured the strange vision problems I have. In fact, these problems are getting 100% worse, and are accompanied by many other problems. Such as middle/low back pain, really bad constipation, a horrible daze-like feeling 24/7, kaleidoscope-like vision, in where I see many colors that aren't there 24/7 (Similar to visual snow, only much worse), Severe leg/ankle pain, saying weird things that I don't mean to say, for example, if I am talking about work or something like that (Completely focusing on what I am saying), something like, "I dropped the banana in the commode", might come right out of the blue and totally embarrass me. I have no clue what causes that, and it really makes me worried to speak to people, due to the fact that I might totally embarrass myself.

If anyone knows what may be causing this, please don't hesitate to respond. If you have any questions, please feel free to ask. Thanks so much, I greatly appreciate any and all information received.

[selmaS]

Many of the chiari forum members also were made to feel it was anxiety or "all in our head" which it really is......

U also do not need to have all the symptoms of EDS to have it...I did not think I did in reading the description of EDS, but there r several diff types...so do let a dr make the dx.

AS for chiari, a CINE MRI is needed to look for overcrowding, and a CSF blockage, those in addition to symptoms will be the deciding factors if u r a surgical candidate.

Finding a true chiari specialist is key.We do have a list of drs that u can research to find one that is best for u.

Good Luck
"selma"

[Dr. A. Srivastava]

Thank you very much for your question; although it is quite hard for me to give you a precise opinion here without being able to examine you, but I would try to provide you some relevant information about your health concern.

In Chiari malformations, the pressure in brain increases which manifests itself as dizziness, diplopia (blurring of vision), migraine like headaches, muscle weakness, facial pain, hearing problems, and extreme fatigue. Sometimes this malformation causes dizziness while working with hands above the shoulder level. Treatment of Chiari malformation depends on the form, severity and associated symptoms. No treatment is required in asymptomatic cases other than regular monitoring. Symptomatic patients may require surgery (posterior fossa decompression surgery). The requirement and pros and cons of surgery in your case should be discussed with your doctor as he knows the severity of problem. Hope this helps.

[Ponyta]

Thank you for your response! I have had an MRI the beginning of this year, of my head, and another last month, of my back. They both were supposedly normal, however, I am still experiencing worsening problems. The head on was to check the area where I had the chiari, and the back was to see if I had any pinched nerves or anything like that. If I had any other problems, would they be able to see them from those MRI's?

I am really flexible, I believe almost double-jointed, however I don't think I have Ehlers-Danlos. I don't have stretchy skin, bruise easily, or am that flexible that I can bend my arm in some ways pictured with those symptoms.

I have been hearing a loud awful ringing in my ears lately, and it really bothers me. I have been hearing it about 10 times or more in a single day. It lasts anywhere from a couple of seconds to a couple of minutes or more. Do you know if it is related to any of the other problems I mentioned, or do you think it is something else?

I have been having these problems for about six years now, and they keep worsening. :(
I wish I would be able to find answers, but everywhere I go the doctors all pretty much blame it on stress and say it is all in my head. WHYYYYY? It just makes me feel awful. I know it isn't just stress. That was what I was told for about three years before they found my Chiari, and that proved it wasn't just stress. Sorry for all of the complaining, I just am worried and sick of the doctors not giving me any helpful answers. :( Is there any other kinds of doctors I can visit?

I already went to numerous eye doctors, including a neuro eye doctor and they all said that it isn't my eyes, but something in my brain instead. I went back to my neurosurgeon, a couple of neurologists, a rhematoligst, and a couple other types of doctors for my symptoms, and they all pretty much told me they had no idea what is causing these problems. Tested me for seizures, since I stare off into space a lot, but the EEG didn't show anything, nor did the overnight one.

Any other suggestions for doctors would greatly be appreciated. I'm worried that it might be MS or something worse. I was diagnosed with Fibro, but the doctor didn't do any specific tests and just made the diagnoses based on the fact that I had a Chiari. Do you think I should try to get a second opinion on that?

Thank you so much for your time and generosity I greatly appreciate it!

[selmaS]

Hi...I also have chiari and have had my surgery...it will be one yr this May 28th...however, from what I was told and I read there is no "cure" for chiari ....the surgery is to help slow the progression.

It is possible for a need to redo this surgery as scar tissue can cause may of the symptoms that may have left to return.

May I ask, were u checked for syringomyelia or tethered cord, Ehlers-Danlos, pusedotumor cerebri?

When was the last MRI u had done?

The mixed up sentence is a common thing for chiarians...I still do it.....

Please join the rest of us in the chiari forum here on MedHelp....

http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc


"selma"