Wednesday, July 9, 2008

Chiari Confusion

Yesterday, in the mail, I received a report that was sent to my neurologist from the neurosurgeon he sent me to.

I sat down and cried, while he told me about the chiari, I didn't realize he thinks its the main cause of my problems and not the PTC.

I read and re-read the report. I am a complicated case and he feels I will probably end up needing the Posterior Fossa Decompression.

So, I went and looked up a side by side comparison of the symptoms of the two different diseases. Ugh, he is likely right, from the get go, at least a few years ago when the original shunt was put in, this has likely been more Chiari than PTC.

See the symptoms are VERY similar, unfortunately, the only one the shunt really relieved was the headaches. I still had a good portion of the symptoms that I had just figured were a side effect from all of the meds I was on to keep the pressure in check, or the result of the stress of getting sick. Those things were all livable until the headaches came back.

The Chiari though, has a few that are not direct PTC symptoms, and those are actually the ones I was having the biggest issue with over the last two years.
Aside from the headaches, I had had numerous times where I needed to hold a wall to walk across a room from dizziness and I have had the worst brain fog in a LONG time, I screw up even simple thoughts now, sometimes having to say them 3-4 times before I get it out right. I have also had numerous issues with hearing troubles, those are not ptc but rather Chiari issues.

God will really need to give me some serious strength for me to get through all of this this time around.


lace1070 said...

Hi from a chiarian in NY ~ so sorry to read about your diagnosis ~ but glad you have one now. I have the vertigo alot ~ it's a big symptom of chiari that can't really be treated. I was diagnosed in 2006 and have had my spine detetethered in an attempt to avoid the brain decompression. I am in the waiting right now. Go over to my blog if u want ~ there's some helpful links on my sidebar ~ know that u r not alone in this journey. There are a lot of us out there. Here's my e-mail if u have ???? or just want to vent:

Hugs ` Lace

Charlotte said...

Thanks for the comment, I don't know what the next step is, I see the Neurosurgeon again on August 18, Your links are a great help, I got two print outs from the doc at my last visit, and the report said so much more.

Chiari Mama said...

Hello from another Chiarin . well the first thing is to get a Chiari expert . That is a Must . come visit ASAP website or Chiari International for lists of Drs near you. . Take care

Charlotte said...

Thank you, The website did not come up... this is actually the first doctor who even checked for it, he looked back at my pre shunt tests and thinks that my previous neurosurgeon messed up...I am seeing the chief of Neurosurgery at Wayne State Medial School, best doctors in Michigan.
I wish I had found him sooner, but he was a second opinion after the first neurosurgeon damaged nerves during a LP shunt replacement that did not go well at all.