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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ty Pat, I will....the consult has ben moved to the 18th when my new insurance coverage will be in effect...things look good for ending this journey soon....
October 31, 2010 - 10:26pmThis Comment
It's been a while since I last posted and wanted to give an update. My neurosurgeon had sent my MRI to his collegue at the University of Virginia (UVA) Neurosurgical Department for review. UVA called me this morning to say the doctor doesn't recommend surgery and mentioned my having cerebral atrophy (which the nurse said is part of the aging process - scary since I'm only 47). Other than that, I'm waiting for my MRI cervical to be scheduled. Will update later.
August 30, 2010 - 5:25pmThis Comment
I just wanted to take a moment and thank all of the people here who have shared their stories. Where once I felt alone and unable to find a course through this illness, I now see that I have fellow travelers on this journey. the information I have gleened from the posts and the help from Pat have renewed my spirit...thank you all....
August 14, 2010 - 7:04amThis Comment
Dear Debbie, Hopefully someone else will have more to tell you, but since my son's cyst was discovered I have done much research along with my nurse-in-training daughter and spoken with neurosurgeons and neurologists about these. The docs have finally said that when it comes to these cysts, they really don't know all that much. Each case seems to be very individualized. Also told that study of brain and brain med is fairly new compared to other areas and cysts and tumors are not clear cut when it comes to answers. Am finding that our experience tho after surgery is fairly common in that neurosurgeons first say symptoms that show up after surgery will resolve in 1 -2 weeks, recovery 2 months and then as you hit anniversary dates they start to move the date till they say 2 years recovery. Those recovering from brain surgery pretty much agree on 12-18 month recovery to get back to normal. Yet some recover sooner, some later - some full recovery. some suffering for years. Since ac have been found in family clusters, they have recommened mri for my husband as he has had severe headaches for years. However, he isn't sure he even wants to find out, since after watching my son's recovery, it is definitely not clear cut whether to get surgery or not. Since my son's surgery resulted from the cyst bursting, there wasn't a choice. His first neurosurgeon was saying to wait on surgery even tho the cyst filled the entire left side of his skull. Other medical personel were saying it was an emergency to get surgery right then as permanent damage could be done because of size- we were calling daily trying to get appt moved up from 2 weeks as son was in pain. Emergency surgery was done because of intercranial pressure from cyst bursting.
August 13, 2010 - 2:54pmThis Comment
Hi Maria and Pat,
I am hoping that one of you may be able to give me some direction. I finally got a written report from the last neurosurgeon at Cornell in NYC. His impression is that I am suffering from posterior fossa arachnoid cyst and that the differential diagnosis includes cervicalgia (a fancy term for neck pain). He never explained why my symptoms have changed yet on the last 4 MRI scans the cyst is pretty much the same size. I continue to have intermittent left facial tightening and some intermittent left eye pressure. The MRI's show pressure on the 7th cranial facial nerve. Not sure if that would affect my eye. I'm so confused as what to do next. Close friends who have had other bizarre health problems are suggesting the Mayo Clinic so that at least I get a team approach. I also sometimes feel like I'm walking around in a fog at times and I'm more fatigued. The weird thing is that I felt perfectly fine a year ago and again I come back to that the cyst didn't grow. One friend suggested possibly occipital neuralgia but I'm not even sure. I'm still waiting for my neurologist to get back to me. I may even contact Mayo myself. Can these cysts stay about the same size yet patients develop new symptoms? Any guidance would be greatly appreciated. I'm still deciding whether to send my stuff to Barrows and even thinking of looking into John Hopkins since I live on the East Coast. By the way, my cyst is about 2cm.
My best to all of you,
Debbie
August 13, 2010 - 2:12pmThis Comment
Hi Debbie - I'm not a doctor or able to give medical advice, but I can say that your nervous system is interconnected and since you have pressure on a facial nerve this could manifest in varying forms of pain affecting various parts of your face.
In terms of finding the appropriate doctors and facility for care, the primary concern is of course finding the specialized expertise you need, and to find a facility as close as possible to your home. I want to again suggest that you contact the awareness and networking group that I have mentioned before so that you can learn from other patients on the East Coast and get their recommendations. http://arachnoidcystnetwork.com/acanetwork/home.php The woman who formed the group, Dia DiCristino, is an EmpowHER member and if you join the EmpowHER site you will be able to send her a direct message. Her user name on the EmpowHER site is DiaDiCristino. This is also a great topic to bring up in our new Arachnoid Cyst support group on EmpowHER, but you will need to register with the site to be able to join the group. Dia was one of the first people to join the group.
Registering for the site is easy. Just go to the home page which is at https://www.empowher.com/. In the upper right corner you will see the "Join us" box, and clicking that will lead you to the registration process.
Let me try to put this another way. I have a very rare form of leukemia. There are a lot of hospitals and physicians who treat leukemia. There are very few who are actually experts in the type that I have. My ability to live well and manage my medical condition is highly dependent on what I am able to learn from other patients.Through them I have identified the specialists and facilities that I would travel to if I were to develop complications that required expertise beyond what I am able to find in my community. Through them I have found solutions to treatment issues that are based on real world experiences and are not found in any text books, websites or doctor's offices. I am only suggesting to you what I have found to be the very best route to take for my own healthcare. Yes, you can contact Mayo and others all across the country, but if you start with talking to other patients you will likely get immediate answers for some of your immediate questions, good counsel on medical professionals and long term sources you can go to immediately when you have more questions.
August 13, 2010 - 4:31pmI hope this helps you, and I'm glad you got in touch.
Take care,
Pat
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Thank you, Maria, for the kind thoughts. Well we just came back from meeting with the neurosurgeon and she is not concerned about this possible csf leak. Because of other doctors there that are not in agreement with her about other issues, she started to go down a route of using a wire in the brain to measure pressure, tho she is not for this at this time. We assured her we don't want to do that and are with her in waiting to see how things go - our concern has been and still is that we are not getting any help for him to get thru life now. She ordered speech and occupational therapy -finally- we didn't know she was able to do this and told us before we had to see neuropsych first (who didn't help us at all past testing). So I am thanking God she isn't concerned this is a csf leak. Have others that had craniotomies and fenestration had a rough time after? How long? Thanks!
August 12, 2010 - 4:05pmThis Comment
Anon - This has to be a very stressful time for your entire family, and it sounds like you've had some very frustrating experiences. Here's a couple of suggestions that I hope will help.
- Contact the Patient Relations Department, which is based at the main hospital, St. Joseph's. They want patients to be satisfied and want to hear about concerns regarding care. 602-406-6226.
- Consider joining a support group. You can find information on the ones associated with Barrow at this link: http://www.thebarrow.org/Education_And_Resources/Support_Groups/index.htm
I hope things will go better for you and your family in the future.
August 12, 2010 - 5:10pmTake care,
Pat
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Thank you, Pat, for taking the time to post this information for us. I appreciate it and will check out the support groups. Am hoping we don't have to deal with much more at the hospital - I wish I would have thought about asking for a patient advocate while we were at the er. I will definitely try patient relations if anymore problems. Thanks again.
August 12, 2010 - 5:25pmThis Comment
You're very welcome. A good friend of mine has been undergoing treatment for brain cancer since last July, and he and his wife have recently joined one of the support groups at Barrow. His wife is the primary caregiver, and she said that being able to talk with other wives has been of great value, and that they have a better understanding of what she's feeling and dealing with than members of her own extended family. It truly is helping both of them in dealing with his medical issues and concerns, and in being able to socialize in a "safe" environment with others who understand what they are going through.
I hope you will consider joining our new arachnoid cyst support group on EmpowHER too. You can find it at:
https://www.empowher.com/groups/arachnoid-cyst-support-group
There are many great people, from around the country, who come to the site to share information, and you're not alone. Please stay in touch.
August 12, 2010 - 5:38pmWishing you the best,
Pat
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