Arachnoid Cysts & Dr. Chheda

[crypt0cu1t]

Dr. Chheda, mentioned that I have a 5.5cm arachnoid cyst compressing my right temporal lobe and that I likely have craniocervical instability. She thinks those two together are contributing to most of my symptoms. I'll post an image of the cyst so that you guys can take a look and let me know what you think.

Main symptoms are Dizziness, Blurry vision, visual snow, burning in the back of my head, weak arms, shaking, fatigue. I also show clear signs of Myasthenia Gravis and Sjogrens (Acetylcholine Antibodies & Salivary Protein Antibodies)

I have seen 5 neurologists and a neurosurgeon and they all said that the cyst wouldn't cause problems.. I'm really confused because I don't know who to believe. I honestly don't see how a cyst in my brain can cause elevated CRP, ESR and autoimmune issues.

Does anyone here have any experience with arachnoid cysts or craniocervical instability?

 

[Hip]

Does anyone here have any experience with arachnoid cysts or craniocervical instability?

See this post.

 

[crypt0cu1t]

See this post.

Holy crap! Thanks!

 

[Diwi9]

What test did you have for acetylcholine antibodies?

 

[crypt0cu1t]

What test did you have for acetylcholine antibodies?

It was part of an Autoimmune Neurology Panel that Dr. Chheda requested. It showed up as having AChR Binding Antibodies at the level of 4.6

 

[Diwi9]

It was part of an Autoimmune Neurology Panel that Dr. Chheda requested. It showed up as having AChR Binding Antibodies at the level of 4.6

Oh, I think I've had that one and was negative. It's always good to find some leads, I hope it leads to good treatment decisions for you.

 

[crypt0cu1t]

Oh, I think I've had that one and was negative. It's always good to find some leads, I hope it leads to good treatment decisions for you.

I hope so too! I'm confident that she will be able to help me at least a little bit.

 

[lafarfelue]

That's potentially a helluva lot of pressure in your skull, with that cyst sharing space with your brain. My first thought was 'how could it not be causing issues..?' Do you have it reviewed regularly to assess growth or changes?

Hopeful that the CCI stuff works out for you. Pretty dang exciting that you may very well get to the root of your symptoms!

 

[crypt0cu1t]

That's potentially a helluva lot of pressure in your skull, with that cyst sharing space with your brain. My first thought was 'how could it not be causing issues..?' Do you have it reviewed regularly to assess growth or changes?

Hopeful that the CCI stuff works out for you. Pretty dang exciting that you may very well get to the root of your symptoms!

I actually just found it 5 months ago when my symptoms became severe. The neurologists just say that i'm depressed and it's not possible for it to cause symptoms lol. I hope it works out for me as well!

 

[Runner5]

I have a friend who is an optometrist and his speciality is finding brain tumors, lupus and auto-immune diseases and other serious issues from looking at eyes. I know it sounds kinda strange when I write it out, but there is actually a lot of changes that happen in the eyes with the presence of auto-immune and tumors. He catches a disease almost weekly. When it was suggested I had an auto-immune problem or something serious he was my first stop, but he's also a friend and I know he's incredibly smart.

Anyway, just a weird idea for you. You might get your eyes checked.

Reading your post I was like .... f*****ck! That is all kinds of serious. For someone to suggest your symptoms are depression - I find that baffling.

I know it's a long road we're on to get better, but I think you're on the right path. Hoping all the best for you! Keep us updated.

Is the cyst parasitic, like maybe the cyst of a tape worm or flat worm? Being housebound, I watch a lot of Diagnosis Mystery and similar shows (YouTube) and those cysts cause absolute **** in people.

Sorry - I'm random, I know it. But rooting for you!

 

[jeff_w]

Dr. Chheda, mentioned that I have a 5.5cm arachnoid cyst compressing my right temporal lobe and that I likely have craniocervical instability. She thinks those two together are contributing to most of my symptoms.

I'm glad to hear the Center for Complex Diseases is now looking into craniocervical instablity (CCI)! I have been seeing Dr. Kaufman since 2014, and I was their "Patient Zero" for CCI. I've gotten several private messages from patients who are being evaluated for this.

It seems that Dr. Kaufman and Dr. Chheda are making this a standard part of their evaluations now.

Does anyone here have any experience with arachnoid cysts or craniocervical instability?

Yes. I had my fusion surgery for craniocervical instability on January 31, 2018.

As a result, I no longer have POTS, post-exertional malaise (PEM), light sensitivity, or brain fog.

The thread where I've posted my story is here.

 

[crypt0cu1t]

I'm glad to hear the Center for Complex Diseases is now looking into craniocervical instablity (CCI)! I have been seeing Dr. Kaufman since 2014, and I was their "Patient Zero" for CCI. I've gotten several private messages from patients who are being evaluated for this.
It seems that Dr. Kaufman and Dr. Chheda are making this a standard part of their evaluations now.



Yes. I had my fusion surgery for craniocervical instability on January 31, 2018.

As a result, I no longer have POTS, post-exertional malaise (PEM), light sensitivity, or brain fog.

The thread where I've posted my story is here.

Wow man! I'm glad that you are getting better after the surgery. I checked out your story and read the symptoms. It honestly seems so much like my story. All the symptoms and everything.

 

[crypt0cu1t]

I have a friend who is an optometrist and his speciality is finding brain tumors, lupus and auto-immune diseases and other serious issues from looking at eyes. I know it sounds kinda strange when I write it out, but there is actually a lot of changes that happen in the eyes with the presence of auto-immune and tumors. He catches a disease almost weekly. When it was suggested I had an auto-immune problem or something serious he was my first stop, but he's also a friend and I know he's incredibly smart.

Anyway, just a weird idea for you. You might get your eyes checked.

Reading your post I was like .... f*****ck! That is all kinds of serious. For someone to suggest your symptoms are depression - I find that baffling.

I know it's a long road we're on to get better, but I think you're on the right path. Hoping all the best for you! Keep us updated.

Is the cyst parasitic, like maybe the cyst of a tape worm or flat worm? Being housebound, I watch a lot of Diagnosis Mystery and similar shows (YouTube) and those cysts cause absolute **** in people.

Sorry - I'm random, I know it. But rooting for you!

I'm very interested in the opthamologist that you mentioned. Would you mind PMing me? I have so many issues with my eyes its crazy! I have toms of blind spots, floaters, visual snow and blurry vision.

As for the cyst, they don't know. They just assumed that it was benign and been there since birth.

 

[crypt0cu1t]

I'm glad to hear the Center for Complex Diseases is now looking into craniocervical instablity (CCI)! I have been seeing Dr. Kaufman since 2014, and I was their "Patient Zero" for CCI. I've gotten several private messages from patients who are being evaluated for this.

It seems that Dr. Kaufman and Dr. Chheda are making this a standard part of their evaluations now.



Yes. I had my fusion surgery for craniocervical instability on January 31, 2018.

As a result, I no longer have POTS, post-exertional malaise (PEM), light sensitivity, or brain fog.

The thread where I've posted my story is here.

Would you mind Pming and giving me the information on which MRI facility you went to and which doctors to email the results to?

 

[frozenborderline]

I'm glad to hear the Center for Complex Diseases is now looking into craniocervical instablity (CCI)! I have been seeing Dr. Kaufman since 2014, and I was their "Patient Zero" for CCI. I've gotten several private messages from patients who are being evaluated for this.

It seems that Dr. Kaufman and Dr. Chheda are making this a standard part of their evaluations now.



Yes. I had my fusion surgery for craniocervical instability on January 31, 2018.

As a result, I no longer have POTS, post-exertional malaise (PEM), light sensitivity, or brain fog.

The thread where I've posted my story is here.

@ashleyO looks like chheda does look for this stuff but still better to bring it up

 

[frozenborderline]

Would you mind Pming and giving me the information on which MRI facility you went to and which doctors to email the results to?

Didya ever do this imaging?

 

[crypt0cu1t]

Didya ever do this imaging?

I did! I dont have CCI. My problems seem to be strictly autoimmune.

Sorry for the late reply, I just saw this!

 

[Gingergrrl]

I did! I dont have CCI. My problems seem to be strictly autoimmune.

What was ever decided re: the arachnoid cyst? I don't understand how it could NOT be causing problems especially b/c you have so many visual and brain related symptoms?!