Arachnoid Cyst Activist Forum
My title
It's all in your head...
I never thought I would hear that, but I did from a neurologist I trusted.
He had been my neurologist for two years, and then suddenly out of nowhere told me that.
It hurt me.
I know what it is like to not know where to turn.
I know none of my symptoms are in my head, but I got so tired trying to convince doctors
that I should be taken seriously. Hopefully one day people will realize that there
is indeed an arachnoid cyst syndrome, and that even if the cyst has been fenestrated--it
is still sitting there in your brain and still causing trouble.
If you are feeling low, come here to vent about your arachnoid cyst. Adhesive Arachnoiditis
patients are also welcome, as many of the arachnoid cyst patients also have AA.
I have been through a lot with my arachnoid cyst -- 11 brain surgeries, 7 shunt systems,
bacterial meningitis, hydrocephalus, spastic gait, rigidity, etc, etc, etc...I have
dealt with most complications an arachnoid cyst can throw at ya, and I'm still here.
Please take my word for it that none of the crap an AC will cause, is in your head!
Don't settle for a doctor who thinks that it is! Keep searching until you find one who
will believe you!
Cheers,
Dia DiCristino
My website
|
|
|
|
|
|
| |
| |
|
Forum |
Posts |
Threads |
Last Post |
|
| Stop here before you register
Details about the email verification system and a couple of rules. |
2 |
2 |
ACA Welcome Packages
April 24, 2009 at 11:44 AM by shayla | |
|
New Here? |
| Say hello
Is it your first time here? Come and say hi! |
250 |
40 |
Private | |
|
Specific Neurological Disorders Associated with Arachnoid Cysts |
| | Blogs
Start your own blog here, write anything you need to. |
- |
- |
Private | | | | Arachnoid Cyst Forum
Everything and anything about Arachnoid Cysts. |
- |
- |
Private | | | Adhesive Arachnoiditis
Adhesive Arachnoiditis is an incurable inflammatory condition affecting the middle (arachnoid) layer of the meninges (which are the membranes surrounding the spinal cord). This condition is thought to be rare... |
13 |
6 |
ESIs (Epidural Steroid Inject...
June 07, 2009 at 12:04 PM by dandywalker | | | Anxiety
Depending on where your cyst is in your brain or spine, a whole array of symptoms can arise. Anxiety was one of my very first symptoms. |
22 |
2 |
How do you deal with the stre...
May 31, 2009 at 10:35 PM by sunlover1975 | | | Arnold-Chiari malformation
Chiari malformation is a complicatd and painful brain disorder that sometimes can be associated with Arachnoid Cysts. |
3 |
2 |
Chiari w/cyst
June 04, 2009 at 07:35 AM by sazmort | | | Ataxia
Do you have problems with coordination. If your cyst is pressing on your cerebellum, you may experience Ataxia. |
3 |
1 |
ataxia vs dystonia/dystrophy
March 12, 2009 at 10:30 AM by sunlover1975 | | | Bacterial Meningitis
Bacterial Meningitis is frequently contracted in one's VP Shunt system, and causes long hospital stays. |
6 |
1 |
My experience with Bacterial ...
April 03, 2009 at 06:46 PM by sunlover1975 | | | Chronic Pain
Most of us here experience this in one way or another. This is the Chronic Pain forum. |
22 |
3 |
Head Pain
Sept 10, 2009 at 01:22 PM by diadicristino | | | Depression
Don't be afraid to discuss depression here on this forum. I deal with it everyday, and I know of many others who do also. |
63 |
8 |
does the stigma make you hide...
June 30, 2009 at 06:11 PM by Lenaracnoide | | | Epilepsy
Many Arachnoid Cyst patients deal with Epilepsy as well, but even if you don't have an AC you can chat about Epilepsy here. |
14 |
2 |
seizures?
March 11, 2009 at 06:46 PM by sunlover1975 | | | Hydrocephalus
Hydrocephalus support group and forum |
19 |
6 |
was that hydrocephalus?
Today at 09:03 AM by sunlover1975 | | | Klippel-Feil Syndrome
Klippel-Feil Syndrome is caused by a failure in the normal segmentation or division of the cervical vertebrae during the early weeks of fetal development. |
1 |
1 |
Do you or your child have Kli...
May 25, 2009 at 12:37 PM by diadicristino | | | Irritable Bowel Syndrome (IBS)
When soft muscles start to atrophy, IBS is a frequent symptom. |
12 |
3 |
stomach gone wild
May 12, 2009 at 08:30 AM by diadicristino | | | Scoliosis
Scliosis prevented my LP shunt from working. Has this happened to you? |
4 |
2 |
Scoliosis and an Arachnoid Cy...
April 28, 2009 at 04:37 PM by diadicristino | | | Stiff-Person (Stiff-man) Syndrome
Some agree that any brain tumor or cyst patient may later develop Stiff Man Syndrome. |
0 |
0 |
No posts | | | Syringomyelia
Many with Arachnoid Cysts develop syrinx over time. |
1 |
1 |
Syringomyelia in association ...
May 25, 2009 at 12:27 PM by diadicristino | | | | Tics and Twitches
We all have them, but do we talk about them? The tics and twitches forum |
- |
- |
Private | | | TMJ (Temporomandibular Joint) Syndrome
TMJ was something I had a battle with from 2004 to the present date, and I am sure it is connected to my Arachnoid Cyst. |
9 |
1 |
TMJ Since i was little
June 14, 2009 at 09:30 AM by Lenaracnoide | |
|
Tests and Procedures |
| MRI
Usually the tool in diagnosing any brain cyst or tumor. |
21 |
2 |
MRI
Oct 23, 2009 at 08:03 PM by Lenaracnoide | | | Spinal Tap
A painful procedure which tests spinal fluid for infections. |
7 |
1 |
my dr is thinking of doing a ...
April 02, 2009 at 06:26 PM by sunlover1975 | | | Lumbar Puncture
Another extremely painful procedure sometimes used in Arachnoid Cyst patients. |
2 |
1 |
Tips
Oct 17, 2008 at 11:34 AM by morphineboy | | | | Arachnoid Cyst Fenestration
Performed either endoscopically or by open craniotomy, or shunting of the cyst and/or ventricles into the peritoneal cavity. This is the surgery of choice for ACs. |
- |
- |
Private | |
|
Medications |
| Antiepileptic Drugs
Topamax, Neurontin, Epilim, etc |
14 |
5 |
Tegretol
Aug 01, 2009 at 07:25 PM by diadicristino | | | The Benzodiazepines
clonazepam, lorazepam, diazepam, prazepam |
5 |
2 |
Benzo Withdrawal
June 30, 2009 at 11:32 AM by diadicristino | | | The Pain Killers
Codeine, Vicodin, Morphine, Dilaudid |
19 |
5 |
Aspirin/Paracetamol/Caffeine ...
June 24, 2009 at 04:53 PM by diadicristino | | | NSAIDs
nurofen, Naprosyn, SynflexVoltarol, Acoflam, Defenac |
7 |
1 |
meds
April 01, 2009 at 07:39 PM by masked156 | | | Antidepressants
Talk about things like Prozac, Lithium, etc. |
9 |
1 |
Antidepressants
June 06, 2009 at 06:09 AM by sunlover1975 | |
|
Arachnoid Cyst Gallery |
| Post-op Pictures
Add any post-op pictures to this gallery. |
3 |
1 |
Post-op pics
May 13, 2009 at 11:35 AM by diadicristino | | | MRI Scans
Add any MRI images to this gallery |
3 |
1 |
MRI Scans
Aug 12, 2009 at 04:04 PM by diadicristino | |
|
Doctors who take Arachnoid Cysts seriously |
| Neurologists
Please suggest some you have had only good experiences with. |
4 |
1 |
Seattle Children's Hospital
Nov 03, 2008 at 03:22 PM by elizabeth | | | Neurosurgeons
A list of surgeons who have had experience with ACs. |
47 |
11 |
MS H SETHI
Oct 21, 2009 at 05:05 PM by Lenaracnoide | | | Neurophysiotherapists
After surgery rehab is crucial, make sure to find a physio therapist who specializes in brain tumors. |
8 |
5 |
Anyone else sick of the ugly ...
Sept 06, 2009 at 11:00 AM by diadicristino | |
|
Random Rants |
| Whatever
Discuss anything here... |
141 |
29 |
Adam Lambert
Oct 20, 2009 at 12:03 PM by arachnoidgirl | | | | news |
9 |
4 |
Privacy rule
May 23, 2009 at 11:07 AM by arachnoidgirl | |
|
Support for other Orphan (rare) Disorders |
| ALS
Amyotrophic Lateral Sclerosis |
1 |
1 |
grandmom with ALS
Feb 06, 2009 at 08:02 AM by masked156 | | | Alzheimer's Disease |
0 |
0 |
No posts | | | Autism |
3 |
1 |
brother with autism
May 18, 2009 at 07:26 AM by IM_mom | | | Creutzfeldt Jakobs |
0 |
0 |
No posts | | | Dandy Walker |
0 |
0 |
No posts | | | Dystonia
I have suffered from this since 2004. |
8 |
2 |
is it worth getting an EMG?
June 18, 2009 at 04:46 PM by morphineboy | | | Facial Paralysis
May or may not be associated with Arachnoid Cysts |
0 |
0 |
No posts | | | Myoclonus
I personally have been suffering from myoclonus for 5 years. Is it because of my AC? |
8 |
1 |
How many myoclonic seizures d...
May 02, 2009 at 08:46 PM by diadicristino | | | Palinopsia
A visual condition not a lot of doctors know about, my AC damaged my Occipital lobes causing this disorder. |
7 |
1 |
Palinopsia my true enemy
March 30, 2009 at 05:55 PM by morphineboy | | | Sleep Disorders
I have had vivid dreams and night terrors since the cyst, have you? |
8 |
2 |
Vivid or strange dreams
Oct 10, 2009 at 03:16 PM by Lenaracnoide | |
|
General Questions |
| Is my Arachnoid Cyst causing this? |
175 |
21 |
Fevers
Oct 17, 2009 at 06:41 PM by GoldenFrog | | | General Neurology Questions |
24 |
3 |
is it just me or do doctors n...
March 29, 2009 at 06:53 PM by sunlover1975 | | | | Polls
Various polls on what you are experiencing personally. |
- |
- |
Private | | | Links and Networking
Here you are able to find and post links relevant to the Arachnoid cyst campaign. |
1 |
1 |
Links and networking
April 15, 2009 at 09:28 AM by arachnoidgirl | |
|
Food and Nutrition |
| Food and Nutrition
Are you allergic to wheat? Do you get headaches from caffeine? Can you eat almonds without your throat closing? Discuss here. |
118 |
18 |
Balanced Diet?
Sept 04, 2009 at 02:55 PM by GoldenFrog | | | Homeopathy and other Natural Treatment
Have you received beneficial natural treatment: acupuncture, homeopathy, crystal therapy? |
46 |
9 |
Laser Therapy
June 28, 2009 at 05:25 PM by diadicristino | | | Arachnoid Cyst Activist Forum Statistics |
Threads: 283, Posts: 1,732
Please welcome our newest member, sammijayy | |
Today's Birthdays |
| There are no birthdays today. |
|
|
|
|
|
|
|
|
