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 2.1×1.6×1.6 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.

Liked by ttourville, kydanzer

@em87

Thanks 🙂 Yes I am in southern Indiana. My neurologist referred me to a neurosurgeon in Bloomington. They also have an office in Indianapolis from what I understand.

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@em87 that is amazing! I’m also in southern Indiana! I’ve been to Louisville and Nashville without success. Can you tell me the name of the surgeon? I’d like to go there and get a second opinion. It’s just a 90 minute drive from where I live!

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@cathyinin

@em87 that is amazing! I’m also in southern Indiana! I’ve been to Louisville and Nashville without success. Can you tell me the name of the surgeon? I’d like to go there and get a second opinion. It’s just a 90 minute drive from where I live!

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@em87 Did you have your surgery? I hope you did and that your recovery is going well.

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Anyone know the difference between arachnoid cysts and perineural cysts, also called Tarlov cysts??

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Yes I did have surgery the day before yesterday the surgeon said my cyst was in an unusual location and that when they opened me up didnt look like the cysts they normally saw. Apparently there was a lot of pressure inside mine and it basically spouted fluid when they opened the cyst wall. They were able to remove the majority of it and believe it wont come back. As for the surgery itself it went well but since I had a regular craniotomy I am in quite a bit of pain and there is a lot of nausea. Moving around even a little bit exhausts me and my head throbs. Hopefully I will be on the mend soon.

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@em87

Yes I did have surgery the day before yesterday the surgeon said my cyst was in an unusual location and that when they opened me up didnt look like the cysts they normally saw. Apparently there was a lot of pressure inside mine and it basically spouted fluid when they opened the cyst wall. They were able to remove the majority of it and believe it wont come back. As for the surgery itself it went well but since I had a regular craniotomy I am in quite a bit of pain and there is a lot of nausea. Moving around even a little bit exhausts me and my head throbs. Hopefully I will be on the mend soon.

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@em87 I wish you a good recovery! Please let us know how you are doing as time goes on.

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I happened to read about what you wrote, and I know absolutely nothing about what you have. But I want you to be courageous and keep going to different neurologists until you find one who acknowledges what you have and treats you. I have a different neuro problem, and my nephew's infant daughter has a neuro problem, and just had surgery on her little infant spinal cord. You FIND someone in Canada to help. Work hard, try to stay strong, and fight for yourself. What you have sounds really hard. God bless, and thinking of you. Lori Renee

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@lorirenee1

I happened to read about what you wrote, and I know absolutely nothing about what you have. But I want you to be courageous and keep going to different neurologists until you find one who acknowledges what you have and treats you. I have a different neuro problem, and my nephew's infant daughter has a neuro problem, and just had surgery on her little infant spinal cord. You FIND someone in Canada to help. Work hard, try to stay strong, and fight for yourself. What you have sounds really hard. God bless, and thinking of you. Lori Renee

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also try the professional organization that oversees neurosurgeons in Canada. Look it up on the internet & contact them. BTW – Over sveral yrs, I "interviewed" 3 NS before I settled on the one who removed my beign meningioma successfully. My family dr. was very helpful in setti g up these referrals so I could decide on which NS was goi g to have the "priviledge" of opening up my brain! BYW – I live in Ontario, Canada. Don't be pushed aroubd by the health care system. Fight for your health!!!

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@lorirenee1

I happened to read about what you wrote, and I know absolutely nothing about what you have. But I want you to be courageous and keep going to different neurologists until you find one who acknowledges what you have and treats you. I have a different neuro problem, and my nephew's infant daughter has a neuro problem, and just had surgery on her little infant spinal cord. You FIND someone in Canada to help. Work hard, try to stay strong, and fight for yourself. What you have sounds really hard. God bless, and thinking of you. Lori Renee

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Thank you we are pushing we found a neurosurgeon that knows these cause headaches so we might be going to him. Thank you for your sweet comments and I hope you and family begin to feel better!! God bless you for taking a moment to comment! Jennifer

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Hello, I haven't posted on this page for a while. I had a surgery for an arachnoid cyst in the velum interpositum in July 2017. The recovery went well and follow-up CT scans showed the cyst had shrunk right down. At the end of 2018, I was diagnosed with associated epileptic amnesia. Vimpat seems to be controlling those symptoms really well,except for the occasional remarkable memory fail.

However, in the past few weeks, I have had some quite strong headaches. Regular pain relief medication doesn't seem to work. These headaches are not fever-related or due to tiredness. They go from my forehead to the top of my head and I get quite strong pressure in the nape of my neck. I think I had this prior to the surgery. Is it something I should be concerned about? I wonder if the hole in the cyst wall may have closed, or another cyst may have developed somehow. Is this something that happens with this condition?

Many thanks,
David

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@kyoto

Hello, I haven't posted on this page for a while. I had a surgery for an arachnoid cyst in the velum interpositum in July 2017. The recovery went well and follow-up CT scans showed the cyst had shrunk right down. At the end of 2018, I was diagnosed with associated epileptic amnesia. Vimpat seems to be controlling those symptoms really well,except for the occasional remarkable memory fail.

However, in the past few weeks, I have had some quite strong headaches. Regular pain relief medication doesn't seem to work. These headaches are not fever-related or due to tiredness. They go from my forehead to the top of my head and I get quite strong pressure in the nape of my neck. I think I had this prior to the surgery. Is it something I should be concerned about? I wonder if the hole in the cyst wall may have closed, or another cyst may have developed somehow. Is this something that happens with this condition?

Many thanks,
David

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Hi, @kyoto – good to hear from you. Glad to hear you've seen some symptom control with the vimpat for the global amnesia associated with your surgery on the arachnoid cyst.

Sounds like you are experiencing very powerful headaches, with regular (I believe you were referring to over-the-counter) pain medications not working and pain from your forehead to the top of your head with strong nape of the neck pressure.

Hoping other members like @em87 @cathyinin @qball2019 @tee9 @jseibert may have some thoughts on this with your having experienced some headache prior to surgery, now having it again, and trying to tease out what is related to the surgery. @jenniferhunter may also have some thoughts on this.

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@lisalucier

Hi, @kyoto – good to hear from you. Glad to hear you've seen some symptom control with the vimpat for the global amnesia associated with your surgery on the arachnoid cyst.

Sounds like you are experiencing very powerful headaches, with regular (I believe you were referring to over-the-counter) pain medications not working and pain from your forehead to the top of your head with strong nape of the neck pressure.

Hoping other members like @em87 @cathyinin @qball2019 @tee9 @jseibert may have some thoughts on this with your having experienced some headache prior to surgery, now having it again, and trying to tease out what is related to the surgery. @jenniferhunter may also have some thoughts on this.

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@kyoto and @lisalucier

The arachnoid cysts sound so much to me like Tarlov cysts, also called perineural cysts. They happen the same way and have all the same symptoms. I don't know what the difference is.I went to Dr. Feigenbaum in Dallas, TX in January and am currently fighting insurance. They denied my surgery claiming it is experimental and there is not enough medical evidence. I believe he also treats the arachnoid cysts. Someone from his office just told me that Rita, founder of Tarlov Cyst Foundation, just met with the national board of radiology (or something like that). She argued that all the "incidental findings" should be required to be documented. I would recommend going to http://www.tarlovcystfoundation.org Rita is very knowledgeable and could offer you some more information.The website has a ton of info. as well.

The headaches sound like mine too. My doctor says I'm having low pressure headaches. It happens when the cysts fill up with CSF fluid from the spinal canal. It doesn't leave enough fluid to cover the brain. Basically, your brain is being sucked inward which explains the symptoms. At least, that's how my doctor explained it to me.

I feel for you when you say you are losing precious time with your children and you are absolutely right! I feel the same way. I've been dealing with the cysts for over 15 years. I was not able to raise my children like I wanted to. They missed out on so much growing up. I also missed out on 15 years of my marriage. Thank god my husband is still trying to hold on for me. Things like this are just a couple of the many reasons radiologists and doctors need to look into these cysts. Undiagnosed, they can take a person's whole life from them!

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Hi – just wanted to introduce a member who is seeking some information on the source of symptoms — whether they are arising from arachnoid cyst or from a traumatic brain injury (TBI), @neet. neet said an arachnoid cyst was seen on MRI in May, almost a year after experiencing the TBI with multiple fractures, bleeds and loss of sense of smell. Thought that members here could address your questions about whether this cyst will disappear gradually and which symptoms may be from the TBI and which are from the arachnoid cyst.

@neet – which symptoms are you wondering about the most, regarding whether the TBI or the cyst is causing them?

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I wonder most about the loss of smell, tinnitus and weird feeling in head when climbing steps or looking upwards. Thanks!

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@neet

I wonder most about the loss of smell, tinnitus and weird feeling in head when climbing steps or looking upwards. Thanks!

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Thanks for letting us know the symptoms you are wondering about most and whether they are due to the arachnoid cyst or the traumatic brain injury, @neet. Hoping members here like @cathyinin @qball2019 @em87 @gloriajean @jseibert @kyoto can add some insights from their experiences with arachnoid cyst to see if these symptoms — the loss of smell, tinnitus and weird feeling in head when climbing steps or looking upwards — might be similar to what they have gone through.

Did your doctor have any thoughts on what your symptoms may have arisen from @neet? Have you received any treatment for them yet?

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@lisalucier

Thanks for letting us know the symptoms you are wondering about most and whether they are due to the arachnoid cyst or the traumatic brain injury, @neet. Hoping members here like @cathyinin @qball2019 @em87 @gloriajean @jseibert @kyoto can add some insights from their experiences with arachnoid cyst to see if these symptoms — the loss of smell, tinnitus and weird feeling in head when climbing steps or looking upwards — might be similar to what they have gone through.

Did your doctor have any thoughts on what your symptoms may have arisen from @neet? Have you received any treatment for them yet?

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Neurologist said all symptoms from the TBI and Arachnoid Cyst is nothing to worry about unless I start having severe headaches seizures and vomiting. Just don’t know what to believe.

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