Hi,
I have started my own blog and want everyone to know about it....it is www.arachnoidcystsupport.blogspot.com
Please follow me on arachnoid cyst questions, answers and concerns. You can email me with quesitons, too. I am a fellow arachnoid cyst survior. I have a very large posterior fossa arachnoid cyst, as well as now, I have a chiari malformation and my brain sags. My brain cyst was diagnosed back in '04, I had my surgeries in '05, and my brain sagging and chiari developed in '06.
These last two developments are due to my shunt overdraining for 6 months. I am a survivor! And now I have lots of insight and knowledge in the world of brain cysts. You can learn new information, get tidbits of news, and ask questions.
Please visit!
Thanks!
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You're welcome Ray. Hoping everyone else feels the same. :)
August 4, 2010 - 8:12pmThis Comment
Hi dstabor,
What is your first name? Thanks for sharing. The neurosurgeon I saw says that is very unlikely that my symptoms are being caused by my cervical spine. I still don't understand since my cyst hasn't grown and I had one great year feeling good except for tinnitus in both ears and no problems with my neck or face. I do have some things that showed up on my cervical spine MRI although the surgeon seems to think it's not my cervical spine due to the location of my cyst mildly compressing my 7th cranial nerve which is the facial nerve. It's so hard to know who or what to believe because these cysts are not such an exact science as are symptoms from other disorders and diseases. Keep me posted. Good luck to you.
Debbie
August 4, 2010 - 11:54amThis Comment
Hi Debbie, you're welcome and my name is Deb by the way. :)
August 4, 2010 - 4:02pmYa, guess I'll see what the neurosurgeon says after my MRI spine along with what Dr Jane (UVA) says. All I know is my head feels really heavy all the time (like a helmet), pressure in the back of my skull, these occasional weird popping sensations (I describe them like popping a rubber band) on the upper side of my head, fatigue (although I do have a sleep disorder) and migraines. Will be so happy when someone figures it out and does whatever is necessary. I'll definitely keep you posted. :)
This Comment
My son had craniotomy and fenestration of a huge ac (12 cm)at Barrows in late April. That is their procedure for an ac. We just saw his neurosurgeon yesterday. He has had many, many problems since the surgery and we are very unhappy with the aftercare there - it is a training hospital and you mainly deal with residents and their neurosurgical dept and neurological dept disagree about ac. At the time that his cyst ruptured (dictating emergency surgery), we were starting correspondence with skullbaseinstitute.com in CA whose procedure is endescopic thru the eyebrow.
August 4, 2010 - 7:38amThis Comment
Hello Maria and welcome Ray,
Ray I cannot believe how many years you have had to deal with all of these symptoms. Maria, just wanted to let you know that I just saw a neurosurgeon at Weill, Cornell in NYC. His name is Dr. Boockvar and he has a lot of experience wth cysts. He typically does about 100 of these operations per year. His surgery is a little different than the one described to me by the neurosurgeon I saw at Columbia Presbyterian. He makes a small incision and goes in with a computer generated laser I believe and sort of filets the cell wall and drains out the cyst. Recovery time is only two weeks. The other surgeon does more extensive removal of the cell wall and the recovery time is 6 weeks. Dr. Boockvar's mortality rate is zero. He seems to believe that my facial and eye symptoms are due to the cyst pressing on cranial nerve 7 although I thought that cranial nerve 5 was eye related. Also, I did not ask him why or how my symptoms are definitely the cyst since it hasn't changed in size yet my symptoms have. Is this a typical thing of these cysts? I am going to e-mail him and ask him. He definitely said it's not my neck contributing to all this which my PT said could be possible. He said he wouldn't operate at this point, but would monitor me and my symptoms and to contact him if anything should change and I should have an MRI and audiogram yearly and that I could choose to have it done at Cornell. I really felt that he knows these cysts. He did admit that unfortunately, there is no hard medical data(enough cases out there that have been done) to prove that patient's symptoms are caused by the cyst. He said that it's all correlative. Basically, you know if the patients symptoms were definitively the cysts once you remove it and the symptoms are gone. I'm wondering if I should still send my stuff to Barrows for another opinion. What surgical procedure do they typically use for removal of these cysts and do you know their mortality rates for removal of the cysts? Hope you're feeling better and getting somewhere in the process of healing. Hope to hear from you soon.
God bless,
Debbie
August 4, 2010 - 7:07amThis Comment
Hi Debbie. My neurosurgeon is thinking along the line as yours regarding surgery at this time. Said he's not convinced everything is from the cyst. I have a pinched nerve in my neck along with arthritis, buldging disks, cysts on spine, etc.. He's ordering a MRI spine since my last was several years ago. However, he did ask if he could send my MRI to his collegue (Dr Jane Sr.) at UVA for his opinion. I'm grateful he's doing this. My f/u is next month, will update afterwards. Good luck to you Debbie, keep us informed.
August 4, 2010 - 8:18amdeb
This Comment
Hello Maria,..I am not sure, but after reading the posts I may be the only male here. First I want to express my gratitude to you for putting this information out to those of us who are wondering what is going on with our health. As for me, I have been having these same symptions since 1997. Epiliptic like seizures, pain in my head ( the back), nausea, nose pressure, as if I have had a stuffed nose for 15 yrs...and of course many other symptions which my doctors here in Calif at Kaiser attribute to my faking a workers compensation case, (owner of the Roofing Company, so I'd be paying myself) or just flat out lying or crazy, ( manic depression ).....Recently, with my Neurologists ok, I have taken myself off the anti-seizure meds with which I have been treated over the past 15 yrs. They did nothing more than help with the pain at the back of my head, and lession the intensiity of the seizures. So now in an attempt to take back control of my health I also, have been in touch with the Barrows clinic and with Duke med center for further evaluatuion. Since I live half the year in the SF Bay Area and the rest is spent in the Blue Ridge ,in NC, I can use either facility, what I would like to know though is your experience with both facilities as I think from my reading you have been to both for treatment; and, your experiences would be of great help to me in planning my next move..This has not been a good day for me, my mind is fuzzy and I had to rest for a few hours as my head was really killin me earlier....So please excuse the driftiness of my post.....any information will be greatly appreciated..Ray
August 3, 2010 - 11:43pmThis Comment
Hi Ray, and welcome to EmpowHER. No, you are not the only male on the site, and you're also not the only male who has an arachnoid cyst. You will find this a helpful community where all are welcome. In addition to this thread there are others about this topic that you may also want to explore.
It's good to have you with us, and we're looking forward to learning more about you and learning from your experiences.
August 5, 2010 - 5:12pmTake care.
Pat
EmpowHER Moderator and Guide
This Comment
Hi Debbie - If you're not able to locate a specialist through the support group or your own searches you might consider contacting Barrow and asking them which hospitals on the East Coast offer comparable services. Pat
May 19, 2010 - 6:08pmThis Comment
Hi Maria,
I'll be saying my prayers for you that everything works to help heal you. I've just developed another new symptom, some tightening on the left side of my face and some pressure in my left eye. No visual disturbances or blurriness, but I just don't feel right. I am going back to the neurologist and hoping for another brain scan (my last one was in October 2009 only a few months ago. My gut unfortunately tells me it's most likely the cyst. Do you know of anyone trustworthy on the East Coast, I live in NY. Have you heard of anyone at John Hopkins in Maryland? I'm still trying to sort all this out as I complete another year of teaching. I'm trying to keep close to my faith in the Lord. It's been a true test for me. It's so hard getting these answers. It seems the more I read on this blog, the more commonalities we all share. If you have any advice on any neurologists or neurosurgeons on the East Coast, I'd appreciate some names and locations. I still have the name of Dr. Spaetzler out in Arizona. My best to you and you and all fellow sufferers will be in my prayers.
Debbie
May 19, 2010 - 4:45pmThis Comment