I was injured in the mid back and developed sringomylia ( syrinx) and an attached arachnoid cyst. Both were removed by a surgeon who has studied this all his life. Was head of Siringomylia foundation at one time. Dr. Urlik Batsdorf. Have any of you had a midback post tramatic cyst and syrinx. Thanks

Hi, Sorry, I can't really help you there. My Arachnoid Cyst was in the brain/back of head and not caused by any injury. I don't really know anything about syrinx and associated cysts in the mid back.

~Jaime~

Hello everyone.
When I was 23 years old and in College having lunch I had this very memorable attack. Both my arms & my whole face went numb. I remember not being able to taste the chicken I was eating. I thought I had a stroke.
I went to emerg who then took ct scans. They found a left temporal sub-arachnoid cyst. They told me I was born with it. anyway, after that first sesure episode I started having horrible episodes every day. I would get this strange feeling before it started. I cannot even explain what I went through with each episode. IT was visual, inability to focus, sort of dream like.
I was so exausted after each episode. I was never quite the same after this started. I seen a nuro surgeon. He did further scans and decided to operate. I had a shunt put in the first time. Before surgery I was put on both 400 mg/day dilantin & 800mg/dy tegretol. I still had sensory seisures once a week or so. The shunt did not work out. It kept blocking up with dried cerebral spinal fluid. They tried 3 more procedures with different sorts of shunts. One of them had a plunger just below the skin at my stomach area. When the shunt got blocked, Id push on this plunger under the skin, sending air up the tube to hopefully clear the tube. All it ever did for me was give me headaches. Finally, they broke the tissue around the cyst down which caused it to scar. The spinal fluid would not penetrate the scarred tissue & therefore not fill the cyst up. So far it has worked. It has been 15 years since that 4th surgery. The damage to my temporal lobe has been done. IT got pressed inward from the lifetime of pressure against it. I still have sensory seisures. I also have memory issues, I have to write stuff down, deep depression, anxiety, inability to focus properly, Inability to remember directions, even though Ive driven there 30 times. Inability to recall time frames. If someone asked me when I was last at the doctor & it was just 2 weeks ago, I would not know if it was 2 weeks or 2 months ago. I have trouble with faces & names. I also have trouble fully following a conversation. I have also been left with a chronic light headedness. It never goes away. Sometimes it gets worse but never leaves. Life sucks!

Rick

To all of you on this forum:

I feel blessed to have just found this forum yesterday, as I have been basically going through so much emotionally. As it all started with horendous migraines about four (4) years ago, my doctors always shook it off as stress headaches, would give me pain medicine and sent me home. Then last year I got to the point that I was having so many physical problems, that mostly had to do with nausea, anemia, and ofcourse those awful migraines more like every few days. I had finally quit my job as I did not think it fair to my employer to have me constantly call in, or to have to go home only in a couple hours after starting my shift. I finally went to the local clinic which an MRI was done, he sent me to a neurosurgeon, and sent me home stating that there would be more danger to do anything as to the location (behind my right eye), as well as that it was too small to cause much damage. My general doctor explained that it measured at 3.7 or about the size of the end of a thumb. I am mostly curious as to if any of you know how fast one grows, and have any of you had one around the same area? Also I concerned about progressive nervous ticks, and do you experience other pain in other areas of the body your doctor cannot explain? So any advice you can give me would be greatly appreciated. May God Bless You all and give you his peace and comfort. MERRY CHRISTMAS and HAPPY NEW YEAR

Hello Lydia,

I'm not sure how fast they can grow but a scan should be able to tell you and your doctor if it is growing from the intracranial pressure, which I think they can see in the vessel (?) as well as the tests they do when they look in your eyes, etc. Have you discussed your symptoms with a neurosurgeon? I think around here (Ontario), they do tend to opt out of surgery when unnecessary. A neurosurgeon should talk with you and weigh the risk and benefits of surgery.

Mine is not causing any problems other than chronic headaches which are currently more or less controlled my topamax. My doctors are saying the headaches have nothing to do with my 9.5 x 7.5 cm cyst sitting in the back of my head. While I want to believe that, I find it hard to believe because of the literature I've read.

Does anyone else out there have a large cyst and if so, do you have symptoms? Has anyone else out there taken headache medication? Did it provide permanent relief? Without the medication these headaches are crippling and I can't imagine that I can take them forever. I also sometimes wonder if the cyst is a ticking time bomb.... If it grows, there is not much room in my head for much else. I wonder how my brain manages to be in there too. (lol)

Viki

Hi ~ I didn't have that cyst (thank God) but I did have a tumor - a grade II oligodendroglioma - deep in my left temporal lobe, leaning against my hippocampus and causing seizures.
It was removed by surgery Feb. 2006, but seizures continued so I had more surgery May of this year.

My point is .... (I talk too much) is your best hope for great care is a university hospital. I can't tell (type -lol) how many tests and how hard these people worked trying to do what was best for me and even easiest for me.

IMHO - A university hospital is a great place packed with great doctors.

Hi, I have just joined this site and read your message. As you also live in Victoria, I was hoping for the name of your surgeon or hospital that can help. My close friends have a son that has the same arachnoid cyst as yours, and are desperate to find more help. They are currently in Queensland and although they have tried many and indifferent ways to combat his headaches and pain etc., unfortunately to no avail. They are hoping to find a surgeon that has more knowledge in this area. I hope you can help us. Regards
LizJ

Hi Liz,
My Neurosurgeon is still operating at the same hospital he was at 11 years ago, when he operated on me. He is A/Prof Michael Murphy, and he is now Director of Neurosurgery, at St Vincent's Hospital, in Melbourne.

~Jaime~

Wow...I just skimmed this whole thread, and I am shaking my head. I have known for years that neuros were clueless about matters of brain structure differences and foreign growths, but this is horribly frightening. Anyone who has any malformation or foreign growth in the brain--no matter how slight!--MUST see a neurosurgeon. All a neurologist can do is treat symptoms--i.e. give you drugs for pain. He cannot treat the source of the symptoms, and he'd rather let you die than admit it. I learned this lesson the hard way 20 years ago in college. (Oh...they don't know anything about any side effects or possible reactions of the meds, either. You need the pharmacist for that.)

Please--all of you--get to a neurosurgeon right away. Neurologists are a waste of your time and could even kill you with their idiocy, ignorance, and arrogance.

Good luck...

LIZARD

i am a 47 year old female,6months ago had a ct because i developed the shingles in my right eye. i have had them 3times over a 9month spand. the pain was so bad i thought i was dying.they said the cyst was 4.2x4.0cm,more or less learn to live with it.i had an mri this week and now it is 5.1x3.8x3.9. i have soo much pressure in the back of my head at times and behind my right eye at times. i have had so many health problems over the years,have not worked in 3years.doctor says none of these problems have anything to do with the arachnoid,recheck in 1year. they say my problem is fibromyalgia. i beg to differ.