Share this:
JeyLei
@JeyLei

Posts: 1
Joined: Nov 29, 2015

No where to turn for answers.

Posted by @JeyLei, Nov 29, 2015

No where to turn for answers.

This is the story of my wife’s life recently:
In May my wife experienced her 1st migraine in her life. Followed by skin darkening above her lip. A CT scan and x-ray showed an arachnoid cyst in her midline posterior fossa with mild effect on cerebellum. Neurologist sees no need for concern ( mind my wife has not had this since birth, and had shown signs of growth in 3 month period ). My wife has had no additional x-ray or CT scan since October. Since then my wife’s condition has downward spiraled and the medical field is failing her. She has been rushed to the ER 3 times with headaches, severe pains throughout body, slurred speech, fever, numbness in legs etc. All 3 times my wife was sent home with unexplained headaches. Recently my wife has started having random subluxation of her SI joints, shoulders and instability in the C1 and C2. A geneticists diagnosed her with EDS due to hypermobility – I’m sorry but EDS is not the underlining problem.

We need help and do not know where to turn anymore.

REPLY

Hi @JeyLei,
I’m glad you found us here on Connect. I can imagine how concerned and frustrated you are. You may wish to post a message to this thread https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/ where you’ll meet @Tbato622. Theodora. also has arachnoiditis and would like to talk with someone.

Where is your wife being treated?

@colleenyoung

Hi @JeyLei,
I’m glad you found us here on Connect. I can imagine how concerned and frustrated you are. You may wish to post a message to this thread https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/ where you’ll meet @Tbato622. Theodora. also has arachnoiditis and would like to talk with someone.

Where is your wife being treated?

Jump to this post

Hello. My name is Theodora Batistatos. I suffer w/arachnoiditis. Any support or info would greatly be appreciated. Thank u

Hi @JeyLei. This is Theodora writing to u. I’m desperate for any support group. I understand what u are going thru b

@JeyLei , I have EDS and some of the same symptoms, especially the c1/c2 instability, SI joint issues and the chronic migraines. I don’t know where you are located, but there are some fantastic headache specialists at Mayo. If I were you, I’d push to get your wife evaluated by one of them. There are experts in AZ and FL, for sure.

Go online….stay busy looking for someone to respond….. Mayo or Carrick Brain Center……do it immediately. Sounds like they dont know ajd are afraid to give you the wrong information….stay strong and try your best to think positive and smile…..both of you….God bless you and I pray you get answers soon and a path to perfect health…..dont forget that nutrition is a key to healing the body….look into Tahitian noni juice, stick with the brand in the green liter bottle with Ralph (island man blowing into a conch shell)….you’ll find the best prices on Amazon…..it allowed my Dr’s son to recover from an inoperable brain tumor that was causing frequent seizures…..

I'm new to this.
I was recently diagnosed with an aracnoid cyst. The MRI says it is having mass effect on the cerebellar hemisphere and vermis.

I'm not sure what to expect, but I'm tired of head pressure and nausea.

The cyst measures are 3.5×6.6x 4.5cm, and describes as midline retrocerebellar aracnoid cyst.
Any advice would be appreciated

@cajunbrat2

I'm new to this.
I was recently diagnosed with an aracnoid cyst. The MRI says it is having mass effect on the cerebellar hemisphere and vermis.

I'm not sure what to expect, but I'm tired of head pressure and nausea.

The cyst measures are 3.5×6.6x 4.5cm, and describes as midline retrocerebellar aracnoid cyst.
Any advice would be appreciated

Jump to this post

Hi, @cajunbrat2 – welcome to Mayo Clinic Connect. Since you mentioned recent diagnosis with an arachnoid cyst and are wondering what to expect, I'd suggest this thread on that topic: https://connect.mayoclinic.org/discussion/arachnoid-cyst/?pg=3#comment-122484

I'd suggest reading through some of the posts, and then posting any questions you may have. You will see the "Arachnoid Cyst" discussion was started in 2011, but if you go to the last page, you will see more recent posts.

Please login or register to post a reply.