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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Hi Maria,
I want to send out my films and brief history to Barrows. I've been a little hesitant based on reading the case that was recently posted by the woman whose son had surgery had Barrows. I assume that it depends on the neurosurgeon you see there. I know based on your experience, you highly recommend Dr. Spaetzler as an expert on these cysts. I guess what I'm asking is do you still recommend the Barrows Institute but that to make sure to contact Dr. Spaetzler specifically instead of working with someone else there. I'm getting to the point where I'm thinking of having my cyst taken out even though according to 4 different MRI's from 4 different facilities the size is minimally different. The one surgeon here at Columbia Presbyterian who I would feel very confident in operating on me said that he really doesn't think my cyst is causing my symptoms since the cyst hasn't changed and my symptoms are new meaning I should have had the same symptoms all along. He would do a full fenestration where the cyst wouldn't fill up again. Another surgeon at Cornell here in NYC seems to feel that is is possible that my facial and eye pressure symptoms on the same side of my face where the cyst is could be the cause. His surgery is less invasive it is along the lines of a fenestration but there is a slight chance that the cyst could fill up. He's had a few cases that did. He operates on about 100 of them a year. So right now, I'm deciding what to do. The docs say just wait and see but in the meantime I have a hard time functioning and I've been more fatigued and I feel like I'm just going through the motions of life living in a cloud like state. My face seems to be getting worse slowly over the last couple months. Any advice would be greatly appreciated. By the way, for all us sufferers, there was a segment today on The Doctors Show. My dad told me about it but apparently my dad looked up the doctor that did the surgeries on the two guests on the show and he has lawsuits pending against him. A good lesson to really check out and get referrals on the surgeon especially if a person is considering surgery. God bless to all and I'll keep you in my prayers.
Debbie
August 9, 2010 - 12:52pmThis Comment
I asked for Dr. Spatzeler at Barrows because of the info I has seen here. I was told Dr. Spatzeler only does surgery on aneurysms now. We have two neurosurgeons at Barrows. Please know that Barrows is a teaching institute - meaning much care is by residents- and secondly, you can not, no matter what doctor you have, talk to your doctor when there is an emergency. You have to call the institute, deal with the desk people that work for your doctor, and if you need an appt, most likely have to go to the er unless you can wait over a month. In an emergency odd hours, you will talk with the doc on call, they will not get ahold of your doctor, and you will be told to go to the er. We were not seen in emergency yesterday, our neurosurgeon and her secretary are not in today nor are they available for calls, and despite efforts by others there at Barrows, they cannot get past the oncall telephone doctor who will only state for my son to go to er. My son is there now with an appt for neuro testing and I am hoping this doctor is telling my husband whether we need to be concerned about this latest development. We may have to go to an er at someplace else to get help if it is needed - this after being told by Barrows that this is a very serious condition that needs to be handled as csf leak is open pathway to brain for bacteria. Hopefully, they are wrong as the docs there for us have agreed on very little.
August 9, 2010 - 4:24pmThis Comment
I am so sorry to hear about your experience with barrows. I on the other hand, had an amazing experience. I got excellent care, and although a lot of my care was given by the residents, they were as caring and knowledgeable as Dr. Spetzler himself. They were so caring, all of them including Dr. Spetzler, and all seemed to have my best interest at heart. Their diagnosises were dead on, and made decisions with me, rather than on their own and not include me. All the nurses were amazing as well, and I have always said, that if I lived in that area, I would be seeing them for my chiari and having that surgery with them as well. I know if everyone has a different experience with everything, and I just wish that yours had been as wonderful as mine was. I hope it gets better.
August 12, 2010 - 3:35pmMaria
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So spent yesterday in the er at Barrows in Phx again. But this time we never even saw a doctor after 5 hours. My son bent over and had clear fluid running out of his nose which continued dripping for some time. Later it happened again. Called his neurosurgeon (who had fenestrated his cyst) emergency number and was told by her "partner" (after once more refusing to allow us to get a message to her) that my son needed to go into the er and not wait till Mon. for our neurosurgeon as this was most likely a csf leak. So we go and wait in a triage type area after being seen by a nurse practioner who agreed that a ct scan was a concern since my son has had so many (one last week) and mri might be a better option. However had to be ordered by a neuro and 5 hours later we are told they are so busy my son won't be seen by one till tomorrow in the er. By this time my son's head is hurting so bad (which after the nose drainage he did not have a headache for the first time since surgery -) he just wants to get home to try a med he already has. Were told we were told to come into the er as the "doctor was covering his butt" even tho he represented himself as being a "partner" of son's neurosurgeon and stating er is where they want my son. So my son continues to suffer on a daily basis, much more so then before his cyst burst requiring emergecy surgery (even tho another neurosurgeon from Barrows was aware of the huge size of the cyst after seeing mri and we were calling daily trying to get appt moved up as my son was declining daily). We have been asked several times at Barrows by other neuros why the surgery was not performed when the cyst was first discovered and intercranial pressure symptoms were present. We don't have an answer. Today we are going to try and start with a different neuro institute hoping to get some semblance of medical care. ISo now that I am done venting, I guess the answer is to keep pushing for good medical care no matter where you are in this journey. Hopefully we can find some for my son who is more than ready to give up at this point.
August 9, 2010 - 8:13amThis Comment
sorry for the sloppy post, my laptop has injured keys due to my 3 yr old grandsons attempt at typing....
August 6, 2010 - 1:11pmThis Comment
Hi Ray,
August 9, 2010 - 3:58amWow, that was an interesting story. Sorry to hear about all you are going through and dealing with. It is funny, because after many months of reading other people's stories, despite us all having the same diagnosis (essentially), there are many differences in the symptoms. Personally, regarding your situation, and not being a doctor, but a fellow-cyst"er", I think it could be your cyst. These cysts press on vital organs of the brain and cause neurological symptoms...numbness, tingling, and depending on what they are pressing on...which nerves, that is where the problems will be (such as numbness in arms or legs, face, etc.) My cerebellum was severely compressed along with my brain stem, which caused full-body numbness when I was in the lying down position for any length of time. Head to toe, I would be numb and unable to move anything...paralyzed. It was frightening. I too have problems with sleep and just wanting to sleep anywhere and at odd times. I have been known to be sitting at my computer and just doze off and wake-up at various times later feeling really, really bad...dizzy etc. It is thought too, that I have had seizures, though nighttime seizures. I haven't had an EEG yet though. So there are a lot of similarities. It is maddening when these doctors try to tell you that the problems are not cyst related. It seems there are soooo many doctors who just don't believe us, and very few who really understand these cysts, and what they are capable of. I was sooo glad when I found Dr. Spetzler in Phoenix, because he never once doubted that all my problems were cyst related. In fact, everything I told him, he said, "that's exactly what these cysts do." It was a breath of fresh air to have someone who not only believed me, but was knowledgable in arachanoid cysts.
"If" I were you, I would just keep searching for the doctor, neurosurgeon, who understands arachnoid cysts. I would let him know that although you do realize thata many of them are not problem causers and are normally asymptomatic for many people, that some people do wind up having problems and you believe yours is one of them. It takes believing yourself, that your cyst is the culprit, and persistence in finding the doctor who also believes it.
Keep us posted, and good luck. Try to stay positive.
Maria
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Good Day all,
August 6, 2010 - 1:03pmI dont know if anyone else has this symptom; but, my problems started around the mid 70's when I found I was falling asleep whenever the temps would get over 90 degrees. I am a roofer and my partners would find me sound asleep laying in a valley on a roof or on some stacked material. Now, I think I was actually having some sort of seizure, but at that time we just figured it waws from the heat. I did have two rather serious head traumas before that time. Around '95 still having the same seizure like occurances, I was driving home from a job in Lompoc, which is about a 4 hr drive to my house in the Bay Area. I would drive about two 10 mins or so and have to pull over and go to sleep. I did this for 9 hours and when I got close to a Kaiser Hospital, my wife met me and I went through the emergency room ordeal. Nothin was found, the Dr. told me to sleep more and ave me motrin for the pain I developed in the back of my head. More treatment and visits to my primary dr. and neurologists and my diogonis was epilopsy. They did find a cyst in the poserior fossia, but told me that could not be causing my problems as "THEY NEVER DO"..So I have been treated for Epilopsy since that time..Also I have been told since my seizues do not show up on eeg's that I have imaginagy or fake seizures, which earned me a trip to the Physiciatric clinic, where I was given a clean bill of health. So now with all the other symptoms that I now have, tremors, pain in head, left side numb at times, legs not supporting me at times, a buzzing in my thigh that goes down to my feet...blurrred vision, hearing loss, loss of short term memory and many more strange and unconnected symptoms; my doctors ell me either I am really sick or a pretty good liar...Not once when I bring up the cyst, which they found in '95 will they address the issue of wether or not the cyst may be the causation of my problems. I tell you all this to see if I am out of line here or am I in line with what most of you are experiencing....I now am getting my own second opinion from, Duke, Barrows and Skull Base Inst...and getting an attorney to sue Kaiser....Oh yeah, one Doctor told me I was crazy....ya gotta love that...
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hi everyone, been awhile since my last entry for that matter about 5 weeks since my last symptoms. today tho they came baack with a vengence. dkon't know if this will sound wierd on not but i seem to have a migrane only on the left side of my head. woke up feeling strange sensations along with ordinary headache and not so ordinary presxure coming form deep inside the back of my head. then the sensations of the muscles on my scalp being pulled thsi way and thatway and the hair standing on end., ecchhh...still, at least the discomfort lets me know i'm alive. all the headache eventually centered on the left side. oh and the pressure moved to behind my eyes and sinuses so i've been expiernencing a intermitttnt crackling popping sesnsation too . all this along with fatigue and the hightlight no truly the the highlight was seeing my ent who said the latest ct scan for another problem he suspected showed nothing,. actually validated my symptoms bieng caudsed by the cyst. i;'m keeping him,.am contacting the skull base institite along with a dr in san francico noted for work and compassion on those with arachnoid cyst. will keep you posted. and thnks for lisnten to me vent. i hope and pray eveyone is enjoying a good day take care and God bless lee
August 5, 2010 - 6:47pmThis Comment
Can I get the name of the Dr. in SF?...Ray
August 5, 2010 - 8:21pmThis Comment
Hi Ray...and everyone else. Please use the private email feature on the site to request specific names of physicians. We generally remove the names of physicians included in comments on the site.
August 6, 2010 - 4:38pmThanks, Pat
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