Hi ! I am a concerned mother who's 18 year old daughter has just now been diagnosed with a very large Primary Sacral Arachnoid Cyst. She has been in pain for several years now. We went from one doctor to the next trying to find out why she was having severe leg pains and lower back pains. Then here came another problem... she started having severe pain when her bowels would move. Finally we were sent to a Chief Neurologist and he did a MRI and found it. We were relieved to finally find out what was wrong with her but here we go starting a new journey. We were referred to a Neurosurgeon and he stated that her's was very rare and he really did not want to attempt the surgery or he was not sure what the best surgical option would be for her. Needless to say this has changed my 18 year old daughter's life. Now we are searching for the best Neurosurgeon that specializes in these cyst so she can get it removed. Cleveland Clinic looks like our best option at this time but if anyone should have any advice or feedback it would be appreciated.
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You and your daughter do sound like you both have been on quite a journey already, and although a diagnosis can be a relief, it adds another dimension of "what now?" as far as finding the right doctors, treatment options and learning about recovery and healing expectations.
I found a resource at EmpowHER from one of our Medical Experts discussing (via video) the first steps: Surgeons: How can patients locate the best ones?.
After viewing this video and reading the transcript, my question to you: What criteria are you using to assess finding the best surgeon for your daughter? Did the video offer any additional insight or questions to ask the doctor?
Have you spoken with the surgeon personally, and have you researched him/her online? We are happy to help in anyway we can, just let us know what you need.
How is your daughter feeling about all of this? She is welcome to talk with EmpowHER about being a patient with a new diagnosis, if she needs any additional support from others who have gone through this same diagnosis. we can help her find other patients or information that she needs.
Lastly, I found a case report online regarding this condition, published in a European medical journal:
May 22, 2011 - 12:09pmhttp://www.springerlink.com/content/8c5rjb2p3nwjr8f5/
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Hi! Thank you so much for replying to my question. We need as much help as we can receive right now. The neurosurgeon that is currently taking care of my daughter is taking his sweet time in getting a referral to a Neurosurgeon at Cleveland Clinic. We have waited on him for over a month now to just do something. We have contacted him many times and his nurse just tells us he is working on it. The medical record dept. is taking their sweet time in getting all her medical records to us. For the life of me I do not understand why it is taking him so long to get a consultation set up with the doctor at Cleveland clinic. Mean while my daughter is suffering in pain. While summer is here and she is on summer break from school we would like to get the ball rolling. We are very confused with the doctor's actions because he was so determined to get right on the matter. In our area is one of the best Neurosurgeons available. I guess when I receive her medical records I must try to find the best surgeon I possibly can. That is why I need your help and your connections to get the best possibly surgeon I can for my daughter's care. I can not thank you enough for being so kind and helpful. I am so full of appreciation and gratitude that you are out there for people like us that really need help. I look forward to hearing from you. Again many thanks!
Sincerely,
June 17, 2011 - 4:59amTeresa Bratcher
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