1. < Spine Health

Arachnoid Cyst

Posted by Kellyo @kellyo, Jul 22, 2011

Hi there, I am living in Ontario, Canada (although my profile lists an american state. There was no option for me to select a canadian province) and I am a 39 yr old woman. I have been diagnosed with an arachnoid cyst of the right posterior fossa which measures 2.1x1.6x1.6 cm.

The diagnosis came from an MRI after I started experiencing tingling and numbing sensations in my hands and feet. Well, later to follow was extreme fatigue, extreme burning pain in the base of my head and neck, behind my left ear, dizziness, light headedness, feeling like air is trapped inside my head, ears popping and buzzing, mood swings and i have had two episodes where I have almost fainted holding my baby.

I have seen one neurologist here in Ontario who tried to tell me i was pre-menopausal or depressed, neither of which is true. It seems like the medical profession here in canada do not recognize these tyes of cysts as being symptomatic, yet i have found thousands of people all over the world with the same cysts causing the same symptoms. It is so frustrating being told that my symptoms are "not likely" caused by this cyst, yet there has been no other medical reason found. The symptoms have progressivly gotten worse since I had my son, who is 20 mths old now. I am no longer working becuase the headaches and fatigue have become dibilitating. I want my life back!! I sleep endlessly during the day and night and feel as though my body just doesn't have enough energy to work for me. I am losing out on precious moments with my children and no one will help me.

If anyone out there has experienced teh same thing or help me in any way please contact me. i desperately need help.

I understand from my enormous research that I have done that these cysts are often triggered to be symptomatic after a c-section child birth (which is when this all happened for me) because of the epidural or spinal that has tapped into my spine because the cyst is near the top of my spinal cord and cerebellum. I also understand that neurosurgeons in other parts of the world are doing great things with these cysts.

thanks in advance to anyone that can help me.

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summerrangel | @summerrangel | Feb 28, 2019
In reply to @jseibert "My daughter was recently diagnosed, with arachnoid cyst as an incidental find. Seeing her symptoms and..." + (show)
@jseibert

My daughter was recently diagnosed, with arachnoid cyst as an incidental find. Seeing her symptoms and call it mom’s instinct. I feel that she is struggling from the cyst. We had a CT, saw a neurosurgeon and a PA of a neurologist at UW Madison. They feel it’s migranes and want to keep an eye on it and do a scan in 6 months. Meanwhile my daughter has had a headache since Jan 7th feels dizzy and pressure on her head. We want to have an MRI ran and no one thinks its necessary. We were at ER twice last week for a migraine cocktail and the following day for more meds in IV. Both provided relief which lasted about 2 hrs. I called the UW daily last week and got no where. She never had migraines and is drinking plenty of water. She’s missed school for 3 weeks now and we are at wits end trying to get a doctor or nuerologist to do more. Any help or suggestions.

Thanks,

Jen

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l

REPLY
em87 | @em87 | Feb 28, 2019
In reply to @summerrangel "Hi @em87 I saw that you have the most recent response and that you are having..." + (show)
@summerrangel

Hi @em87

I saw that you have the most recent response and that you are having surgery soon. I hope everything goes well and please update me one everything if you could.

I am 14 right now and i got diagnosed with a arachnoid cyst when I was 13. The cyst is located in between my brain and skull. I had symtoms like terrible headaches that will last days but just to come back the next day (which still go on), I would get light headed, my neck would start cramping up because of the pressure on my head, etc.

Everyday gets more torturous. Once I went to the ER for it I have had many doctor appointments every month. But, still the pain is there. They all say I’m too young to get sergury to get the tube next to my spine but I just want it to be gone so bad. It is so hard to focus in class when all I can think about is the pin point pain.

What do you guys do to deal with the pain? Is there any advise you can give me? I can not stand this anymore and I hope no one has to go through this. I hope you are doing well and your surgery goes successfully. Sending you my best wishes!

Jump to this post

I just suggest keep trying to find someone who will truly listen. It's hard to do, I know. What ended up happening with me is that eventually they had tried every possible option to treat my pain medicinally. The neurologist told me that they had exhausted all the options for that then sent me to the neurosurgeon to discuss a possible resection. The neurosurgeon said this was basically the last option I had and that there is a 50/50 chance of this working. I jumped at the chance to have this removed because it is effecting my life badly. I've lost a good job due to the unrelenting headaches, I can't be the mother I want to be because I always feel tired and in pain, I've gained weight because I don't get out and do much because I am losing weeks upon weeks of my life fighting headaches that are "worst headache of my life" every time. Just keep trying to find the right doctor and don't give up, eventually someone will listen, hang in there 🙂

REPLY
3 replies
summerrangel | @summerrangel | Mar 1, 2019
In reply to @em87 "I just suggest keep trying to find someone who will truly listen. It's hard to do,..." + (show)
@em87

I just suggest keep trying to find someone who will truly listen. It's hard to do, I know. What ended up happening with me is that eventually they had tried every possible option to treat my pain medicinally. The neurologist told me that they had exhausted all the options for that then sent me to the neurosurgeon to discuss a possible resection. The neurosurgeon said this was basically the last option I had and that there is a 50/50 chance of this working. I jumped at the chance to have this removed because it is effecting my life badly. I've lost a good job due to the unrelenting headaches, I can't be the mother I want to be because I always feel tired and in pain, I've gained weight because I don't get out and do much because I am losing weeks upon weeks of my life fighting headaches that are "worst headache of my life" every time. Just keep trying to find the right doctor and don't give up, eventually someone will listen, hang in there 🙂

Jump to this post

@em87
Thank you. I hope the surgery goes successful and you can continue your life with peace. Keep me updated and stay strong!🙂

REPLY
jseibert | @jseibert | Mar 2, 2019
In reply to @lisalucier "@jseibert - how did the appointment with the neurologist and the neurosurgeon go?" + (show)
@lisalucier

@jseibert - how did the appointment with the neurologist and the neurosurgeon go?

Jump to this post

@lisalucier sorry for the delay I was on a work trip. The appointment wasn’t that great. I thought Mayo Clinic would have a resolution. Her cyst is in the left side of her temporal lobe and is the size of a small orange. Neither one of them felt it was the cause of her headaches. She is in her room and really only comes out to shower or use the bathroom. They asked us to give it another month or two, waiting for amitriptyline to kick in. The problem I have is she is entering her 3 week on 25mg age 13 & my friend takes 10mg and felt relief after 2 wks. I never questioned the doctors to see if they were arachnoid specialist. All that I’ve read is very controversial on treatment and surgery. Interesting enough I got online and watched a Dr. Don Kim from Houston and he stated that if it is a constant headache and gets worse probably the cyst. Also if a person has tried imtrex or migraine meds with no relief prob a change in cyst and need to operate. All things I didn’t know before appointment. I truly felt they listen to the results and opinions of referred doctors and don’t form their own opinion. Plus a large cyst can be dangerous. I don’t imagine they would like to have their child go home and continue being in pain another month or two. She has been out of school since Jan 7th. So, now I’m debating on trying to see doctor in Houston or somewhere closer. It’s hard when you see you child in constant pain and they look to us for help. We want to put trust in doctors, but I think I should have asked more questions. Thanks for checking in.

Jen

REPLY
1 reply
jseibert | @jseibert | Mar 2, 2019
In reply to @johnbishop "Hi @jseibert, I wished I was able to answer your question. I think the surgeon will..." + (show)
@johnbishop

Hi @jseibert, I wished I was able to answer your question. I think the surgeon will be able to tell you at your consultation. I'm glad you were able to get an appointment quickly!

Jump to this post

Hello @johnbishop, we had the appointment, but sort of disappointing. I don’t know if the doctors we saw are specialists in arachnoid cyst. They don’t feel her cyst is the cause of her headaches. Wanted us to give it a month or two. Disappointing that I doubt they would go home having pain, or have there daughter in constant pain. After leaving a few days I watched a specialist online presentation and he said if the cyst is large enough & consist headaches that get worse than it probably indicates it’s grown. Plus if imtrex or migraine meds have been tried with little relief than, it is prob cyst. I guess I expected more from Mayo Clinic. Now, list at what to do. She’s 13, and stays in room due to pain. It’s been since Jan 7th and I feel frustrated not being able to help her. She’s on amitriptyline, a preventative for migraines but no relief and we are in the 3rd week. Thanks for checking in.

Jen

REPLY
tee9 | @tee9 | Mar 2, 2019
In reply to @em87 "I just suggest keep trying to find someone who will truly listen. It's hard to do,..." + (show)
@em87

I just suggest keep trying to find someone who will truly listen. It's hard to do, I know. What ended up happening with me is that eventually they had tried every possible option to treat my pain medicinally. The neurologist told me that they had exhausted all the options for that then sent me to the neurosurgeon to discuss a possible resection. The neurosurgeon said this was basically the last option I had and that there is a 50/50 chance of this working. I jumped at the chance to have this removed because it is effecting my life badly. I've lost a good job due to the unrelenting headaches, I can't be the mother I want to be because I always feel tired and in pain, I've gained weight because I don't get out and do much because I am losing weeks upon weeks of my life fighting headaches that are "worst headache of my life" every time. Just keep trying to find the right doctor and don't give up, eventually someone will listen, hang in there 🙂

Jump to this post

@em87 best of luck with your surgery.

REPLY
1 reply
em87 | @em87 | Mar 2, 2019
In reply to @tee9 "@em87 best of luck with your surgery." + (show)
@tee9

@em87 best of luck with your surgery.

Jump to this post

Thank you. I'm very nervous about it. I keep trying to find stories from people who have had a craniotomy to remove an arachnoid cyst so I know what to expect when I wake up but am having no luck. They say they are going to remove a piece of skull almost the size of a baseball. Sometimes I get so scared about it I almost want to back out but I know this is my once chance for relief so I need to do it.

REPLY
1 reply
qball2019 | @qball2019 | Mar 3, 2019
In reply to @jseibert "@lisalucier sorry for the delay I was on a work trip. The appointment wasn’t that great...." + (show)
@jseibert

@lisalucier sorry for the delay I was on a work trip. The appointment wasn’t that great. I thought Mayo Clinic would have a resolution. Her cyst is in the left side of her temporal lobe and is the size of a small orange. Neither one of them felt it was the cause of her headaches. She is in her room and really only comes out to shower or use the bathroom. They asked us to give it another month or two, waiting for amitriptyline to kick in. The problem I have is she is entering her 3 week on 25mg age 13 & my friend takes 10mg and felt relief after 2 wks. I never questioned the doctors to see if they were arachnoid specialist. All that I’ve read is very controversial on treatment and surgery. Interesting enough I got online and watched a Dr. Don Kim from Houston and he stated that if it is a constant headache and gets worse probably the cyst. Also if a person has tried imtrex or migraine meds with no relief prob a change in cyst and need to operate. All things I didn’t know before appointment. I truly felt they listen to the results and opinions of referred doctors and don’t form their own opinion. Plus a large cyst can be dangerous. I don’t imagine they would like to have their child go home and continue being in pain another month or two. She has been out of school since Jan 7th. So, now I’m debating on trying to see doctor in Houston or somewhere closer. It’s hard when you see you child in constant pain and they look to us for help. We want to put trust in doctors, but I think I should have asked more questions. Thanks for checking in.

Jen

Jump to this post

@jseibert Absolutely keep asking questions. Make a list of questions and bring them to your next appointment. I've had doctors dismiss my symptoms for many years only to find out the issue had been there from the beginning. You are your own best advocate. Don't give up and by all means, keep looking online for a specialist. There has to be some out there.

REPLY
1 reply
tee9 | @tee9 | Mar 3, 2019
In reply to @em87 "Thank you. I'm very nervous about it. I keep trying to find stories from people who..." + (show)
@em87

Thank you. I'm very nervous about it. I keep trying to find stories from people who have had a craniotomy to remove an arachnoid cyst so I know what to expect when I wake up but am having no luck. They say they are going to remove a piece of skull almost the size of a baseball. Sometimes I get so scared about it I almost want to back out but I know this is my once chance for relief so I need to do it.

Jump to this post

@em87 please just make sure you have confidence in your surgery team. Nothing wrong with second opinions either. We only get one body-take good care of yourself. All the best.
Tee

REPLY
jseibert | @jseibert | Mar 3, 2019
In reply to @summerrangel "Hi @em87 I saw that you have the most recent response and that you are having..." + (show)
@summerrangel

Hi @em87

I saw that you have the most recent response and that you are having surgery soon. I hope everything goes well and please update me one everything if you could.

I am 14 right now and i got diagnosed with a arachnoid cyst when I was 13. The cyst is located in between my brain and skull. I had symtoms like terrible headaches that will last days but just to come back the next day (which still go on), I would get light headed, my neck would start cramping up because of the pressure on my head, etc.

Everyday gets more torturous. Once I went to the ER for it I have had many doctor appointments every month. But, still the pain is there. They all say I’m too young to get sergury to get the tube next to my spine but I just want it to be gone so bad. It is so hard to focus in class when all I can think about is the pin point pain.

What do you guys do to deal with the pain? Is there any advise you can give me? I can not stand this anymore and I hope no one has to go through this. I hope you are doing well and your surgery goes successfully. Sending you my best wishes!

Jump to this post

I am so sorry you are going through this. Where is yours located? Both you and my daughter are in pain and I am
Looking for a specialist that deal with arachnoid cyst. I suggest you do the same. I’m not stopping her from any activities, but she can’t even go to school. She has had consistent headaches since Jan 7th. I mean on-going never stops gets less intense but always there. Are you still looking for help? Where have you gone this far?

Jen

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