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Arachnoid cyst

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david60752
david60752

Hello, I am new to this discussion. I have been on the PMR group s. My 34 year old daughter had an MRI and it was discovered she has a thoracic arachnoid cyct spread between 3 vertebrae. She presently does not have any physical issues because of this, but has been advised it should be removed. She is very scared to have this done. She doesn't know if she should just have it monitored to see if it changes, or whether she should have the operation. Does anyone have any advice and has any one had this type of operation? Thank you. I Know being on the PMR discussion group has been very helpful .

1 like, 9 replies

9 Replies

  • lindagkelly
    lindagkelly david60752

    Posted

    Hi David,

    I don't know much about this at all, except if that cyst continues to grow and invade her spinal column, it can cause serious pain and neuropathy. If you are concerned about whether or not she really needs surgery, you should see perhaps a neurologist. Sounds like this is very rare. I think you need to listen to the experts.

    Good luck to you both.

    Linda

    • david60752
      david60752 lindagkelly

      Posted

      Thank you for getting back to me. We had a chance to act on this and have surgery scheduled for Thursday. We have a neurosurgeon that has a very good reputation, but my daughter is very scared. She is a stay at home Mom for our seven year old grand daughter and we want to keep everything as normal for her as possible over the next several weeks. Still would like to hear from someone that has had a similar type surgery. Thank you all!
    • lindagkelly
      lindagkelly david60752

      Posted

      I think you are definitely moving in the right direction. Having a neurosurgeon that you are confident in makes all of the difference in the world.  To ease your daughter's fears, I think you need to talk to the neurosurgeon or his assistance and find out exactly what to expect.  How long will the surgery take? How long will she be in the hospital afterwards? What are the risks? And how likely are these risks to occur? How will the pain be controlled afterwards? Will there be physical therapy afterwards?  Just ask all of the questions you can think of.

      Good luck to both of you.

      Linda

    • lindagkelly
      lindagkelly david60752

      Posted

      Hi,

      I was thinking of you and your daughter this morning. what did the doctor say about the surgery yesterday? I'm sure it's rough on your daughter today.

       

  • david60752
    david60752

    Posted

    Hi, the surgery was canceled one hour before it was supposed to begin. We were in the hospital ready to go and one specialist"s plane got canceled so the Dr. conferred with 3 other surgeons and it was decided to monitor the cyst over time with MRIs and only do the surgery if the cyst gets worse or my daughter started showing symptoms. At this time we are ok with this decision and will watch it closely. Thank you for your support and concern. We still would like to hear from someone that has gone thru this so we know what to expect. David
    • lindagkelly
      lindagkelly david60752

      Posted

      Wow, I sure wish you both luck.  Sounds strange that they were prepared to do the surgery and the only reason they cancelled was because of transportation issues. So now they have decided to just monitor the cyst and decide later on if she needs surgery or not? I thought they already decided to do the surgery. Just sounds a little strange - like maybe it's too much hassle to get those 4 doctors together again?  Good luck to you both and I hope you can find someone wh o has gone through this kind of surgery to talk to you.

      Linda

  • lindagkelly
    lindagkelly david60752

    Posted

    Hi David, I was just reading about something that may be helpful to your daughter in the future. This article specifically mentions the type of cyst your daughter has. If your daughter develops nerve pain or neuropathy before or after surgery, this may be something that can help her.  I have nerve pain in my leg and neuropathy in my foot, so I am going to ask about this treatment.  The name of the article is Botulinum Toxin Type A for the Treatment of Neuropathic Pain in Neuro-Rehabilitation
  • david60752
    david60752

    Posted

    Hi again, thanks for keeping up with us. I will check the article. Right now everything seems ok, evidently just before we were to go to surgery, we actually were at the operating room, the new Drs. that were consulted felt we should wait and monitor. They felt at this time the operation had more of a chance to cause more problems than it might solve, so they came to the conclusion to just monitor it. 
    • lindagkelly
      lindagkelly david60752

      Posted

      That's very possible.  I know from first hand experience that surgeries can cause more pain than it solves.  I wish both of you the very very best of luck in the future and will keep you in my prayers.

      Linda

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