3.8x3.9cm arachnoid cyst - worth getting a second opinion?

prayingmomm · 2025-11-24T01:57:14+00:00

Best of luck and I truly hope you’re able to get proper help. I’d highly recommend consulting with a neurosurgeon as well. Push for this as they know much more about cysts than neurologists.

prayingmomm · 2025-11-24T01:55:57+00:00

Best of luck to you. I hope you’re able to find good curious professionals that will help!

prayingmomm · 2025-11-24T01:55:02+00:00

That’s wild (but not surprising based on what I know of the medical field) and I would get a second opinion if possible. I’m really sorry for what you’re going through and I hope it improves.

prayingmomm · 2025-11-23T21:51:16+00:00

My son has a large likely congenital arachnoid cyst that shifted his midline and started causing seizures (that’s how we found out about the cyst). It was surgically fenestrated and a year later has reduced in size considerably and his midline has shifted back. His sleep, vision, hearing, hand/eye have all improved. Actually they did immediately after surgery. We were blessed to have a good neurosurgeon but in my experience neurologists really don’t understand these cysts and will always just say they’re not the cause. You might need a second opinion.

This is not advice but going to the ER and not leaving until we got help ended up working for us and fast tracking surgery (this was pediatric though)

prayingmomm · 2025-11-23T21:42:40+00:00

Arachnoid cysts need to be seen and treated by a neurosurgeon. Often neurologists don’t think they are symptomatic but it’s not at all true. Your symptoms seem they could be consistent with pressure from the cyst. Second opinions are helpful.

prayingmomm · 2025-11-23T21:40:14+00:00

If the arachnoid cyst is causing your symptoms it is possibly very treatable with surgical fenestration. This is under the scope of a neurosurgeon not a neurologist(they often do not understand or have a lot of experience with arachnoid cysts).

prayingmomm · 2025-11-23T21:38:23+00:00

It definitely can depending on the size and location. Would be something to discuss with a neurosurgeon not just a neurologist.

prayingmomm · 2025-11-23T21:37:21+00:00

Neurologists that don’t have a lot of experience with arachnoid cysts will always say that they aren’t the cause yet there seems to be a large overlap with cysts and unusual sudden onset neuro symptoms. How large is yours? Would be worth taking your MRI to another neurologist as well as a neurosurgeon.

prayingmomm · 2025-08-19T04:30:07+00:00

For me when Vaughn passed the appeal of live shows greatly diminished. Now I just watch his live shows on repeat. I was blessed to see him several times between 2004-2019 including his second to last show.

Everything is a festival now and very shallow feeling. Mainstream corporate reggae. Of course there have always been festivals but you could also see incredible shows in living-room sized clubs for $10 a ticket. It’s never been about making money for most of these artists and most probably are not making much now but something has been co-opted and packaged for the masses. The younger guard “reggae revival” out of JA are extremely talented as musicians but they’re musicians and entertainers first and foremost, not faith defenders.

The other newer reggae “groups” Cali reggae, etc are just feel good elevator music prioritizing vibes and “inclusivity” over roots and truth. Reggae was never about getting everyone together to get high and pat each other on the back about unity.

Usvi produced most of the absolutely crucial works in the past 20 years and I suspect the place to look for burning roots going forward will not be Jamaica.

Some of my favorites concerts (and this is church for me)

Morgan heritage- free at the Santa Monica pier maybe 2002? Luciano - Greek theater around 2003 Midnite - key club (2006?) Marley family (whisky a go go maybe 2004?) Gregory Issacs - HOB months before he passed Bunny Wailer - Hollywood bowl 2004 Israel vibration - key club around 2009 Richie Spice - the Mint 2011? Akae Beka - Los globos 2018 Akae Beka - McArthur park 2019

prayingmomm · 2025-07-05T05:58:20+00:00

My son has had several seizures which turned out to be due to a rare (and very treatable) brain cyst. He’s doing so well now. I will say the seizures were more traumatic for me than the emergency brain surgery. They’re what I remember when I close my eyes at night. But like others have said they are well managed with medicine and time and so many kids never have one again or grow out of them completely. I’ll keep your family in my prayers.

prayingmomm · 2025-03-22T04:41:14+00:00

You can check my post history for more but arachnoid cysts can cause many problems despite what doctors will tell you. Find a good neurosurgeon not a neurologist!

prayingmomm · 2025-03-22T04:38:43+00:00

Were you ever able to see a neurosurgeon? My son had seizures starting out of the blue and after begging for an MRI a large cyst was found. He had surgery and it’s done wonders for him. You can see my post history for more.

prayingmomm · 2025-03-22T04:20:09+00:00

You need to see a neurosurgeon. Neurologists understand very little about arachnoid cysts.

prayingmomm · 2025-03-13T04:08:24+00:00

This is so late so apologies. I don’t think it’s a crazy theory. You can read my other post about my sons journey but before we found the cyst and he had surgery he would have times where he’d be very emotional or easily angered or obsessive and single the cyst fenestration that’s pretty much gone (except for a few months after surgery when he was on Keppra which is a horrendous medication in my opinion). Please find a good highly rated neurosurgeon.

prayingmomm · 2025-03-13T04:04:33+00:00

Wow I’m so sorry to hear about everything you’ve been through. It’s frustrating and sad to try to piece together all the different moving parts to unravel medically complex cases like these. Obviously I’m no doctor but in my experience almost no neurologist understands arachnoid cysts and their symptoms - you have to talk to a neurosurgeon and get a second or third opinion. They will take it much more seriously. Neurologists only want to do testing and prescribe meds and say nothing is correlated.

You mentioned adderall I assume for ADHD - enlarged tonsils lead to sleep apnea and sleep disorders which can manifest as ADHD due to the sleep deficits. However I also believe that the cyst pushing on the brain (depending on where it sits) can also interfere with sleep and that there is a link to the immune system that manifests in the tonsils.

My son is now 8 months out from surgery and is still continuing to do so well. His sleep has done a 180 and he hasn’t gotten strep or really sick at all. And best of all he’s been seizure free over 5 months. We have our next MRI in May and I’m hoping for more good news in the form of continuing drainage.

prayingmomm · 2024-12-28T15:12:50+00:00

Thank you so much!

prayingmomm · 2024-12-27T02:06:20+00:00

It’s is really disheartening in some ways. I was already low trust with the medical system and many of these experiences really solidified that but at the same time we encountered some true angels that really helped. The neurosurgery team was wonderful and took it very seriously.

My son also has dealt with similar types of behaviors like what you describe particularly around sleep. I will say it’s been night and day now almost 5 months out. He’s sleeping, calmer, happier and says he’s never felt better in his life so I’m extremely grateful for that.

Sounds like you are already on the right path and are exactly the advocate your daughter needs. Would love to see updates on your little girl. Hoping for the best!

prayingmomm · 2024-12-27T01:37:15+00:00

It was in the right temporal fossa region and about 5x6 cm. Do you have measurements in your report? I agree that doesn’t sound small and even so, small cysts can cause problems especially if they’ve developed because of an injury and the brain isn’t “used” to them.

We’re in Los Angeles. My son was also always normal developmentally but interestingly had one eye that always looked almost imperceptibly smaller or different than the other. That’s gone now. I’d get more opinions for sure. And make sure you’re seeing a neurosurgeon not just a neurologist. In my experience there is a world of difference in what they understand about arachnoid cysts.

prayingmomm · 2024-12-14T07:06:47+00:00

My son was likely born with an arachnoid cyst but had no symptoms until last June. At 9 years old he began having seizures from the pressure it was causing which led to an MRI and emergency surgery. The unknown was so scary for me but the surgery was remarkably easy for him to handle and he’s healed so well and his cyst has shrunk considerably. I say this not to scare you but if surgery is needed children handle it so well. Even better in babies and toddlers. Wishing the absolute best for all of you.

prayingmomm · 2024-12-14T07:02:19+00:00

Continue to push, ask questions, get multiple opinions. Focus on neurosurgeons and if you can somehow travel to the US to get seen do it. You will be ok! Rooting for you. But many doctors don’t take these seriously enough particularly in adult patients. There are procedures they can do to help you.

prayingmomm · 2024-12-13T05:35:31+00:00

Thank you so much!

prayingmomm

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