Hello, Spring of 2019 got diagnosed with Chiari 1 Malformation, I had never heard of it. Then my neurologist referred me too Neurosurgeon, who ran extensive amount of test on me. July, 2019 I meet with my neurosurgeon who informed me that I had Tethered Cord Syndrome. Ok, I didn’t know what Chiari was and now I never heard of TCS.
I do now, Nov 19th, I had my TCS untethered I was released on November 23rd. From Nov 30-Dec 16th I experienced the worst pain in my right quad, on Dec 13th they decided to do a MRI, and on the morning of Dec 14th, I received a call from my surgeon, informing me I was leaking CSF Fluid. (what is that) I know now. On Dec 16th I was readmitted to the hospital and Dec 17th, I had surgery #2 to repair leaks and to address a arachnoid cyst that was discovered on the Dura. I was fitted with a shunt to drain spinal fluid for 5 days, I was discharged Dec 23rd, I went home and once again, I begin experiencing headaches worst then ever, and severe dizziness. On Jan 27th my wife noticed my incision was protruding out. I had a scheduled appointment with my neurologist on Jan 28th. As soon as he felt the incision he said your leaking again and immediately sent a note to my surgeon and ordered a MRI. Jan 29th had a new MRI and Appt with Surgeon was scheduled Jan 30th. I meet with Surgeon once again he admitted me to hospital and scheduled surgery #3 for CSF Leaks. This surgery two more leaks were found in the lumbar area and they did a Brain MRI showing Chiari sitting at 8mm.
So here it is Feb 17th, my body is physically exhausted and I am mentally wore out.
Would love to hear from you,
Bob
Hello Bob and welcome to the group! My goodness you have been through a lot in a relatively short time ( although I know to you it seems like forever). Thank God you were able to find a surgeon to help address your problems as quickly as you did. And thank God for your wife who was vigilant enough to recognize that you needed more help. I can only imagine how you feel. I am not a Chiari patient however my daughter was diagnosed in August 2019. We are still struggling to find the right doctors for her. We have seen many specialists and a couple of neurologists and neurosurgeons. Unfortunately, there is not enough education for the medical community in our area (we live in SC). Currently, we are waiting for a second opinion from Boston’s Children’s Hospital. I completely understand how physically, mentally and emotionally exhausting this condition can be. Please take some comfort in knowing that you are not alone. This community has been, and continues to be, a great blessing to me. I have learned so much from the members here and oftentimes, it is just a relief to know we are not alone in this battle. Thank you for sharing your experience and I encourage you to continue to share and ask questions. There are so many wonderful people here that have been through or are going through exactly what you have. Again, welcome and God bless you. I pray you will continue to heal quickly both physically and emotionally.
Best wishes and kindest regards,
Angel
Thanks for replying, and sorry your daughter at such a young age has to go through this. I am 56, but when I was 4 or 5 I wore orthopedic shoes, apparently I was having difficulty walking, and then my mom passed when I was 7 of Lupus, so after that my health care was very sketchy. I played sports, growing up, but my cousins always teased me for being clumsy which now may have been related to my tethered cord which the surgeon said could have attributed to my balance and clumsy issues growing up.
Fainting? Has anyone with Chiari experienced fainting? I went down yesterday in my bathroom after brushing my teeth and hit the right side of my head pretty good. It happened very fast, without any warning and this is the third time this has happened to me since I had the surgery for TCS.
Bob
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So sorry to hear about your fainting episode but thankful that you were not injured too badly. Hope ( my daughter) hasn’t completely fainted—yet—but she recently has been experiencing episodes that I believe are on the verge of truly fainting. For the past week she has had multiple episodes daily where, in her words “everything goes completely black and sparkly!” She looses all her vision and only sees black with sparkling lights…which to me sounds very much like a fainting episode. It takes only a few minutes to pass and then she can see again but it seems like so much longer. It was terrifying for both of us the first few times. We saw her optic oncologist this week and he assured us that those episodes are likely being caused by a processing issue with her brain due to the compression of her spinal cord. She is also loosing most of her vision. It used to just be blurred or double during her worst headache now, it is constant. She has a very small area in the center of field of vision that is clear. This too he attributes to her brain and not her eyes. Thankfully, his referrals and notes may be exactly what we need for our pending second opinion with Boston’s Children’s Hospital. Finally there is definite evidence ( besides the MRIs) of an issue with her brain. Thus far most of her doctors we have seen want to focus on migraine as the cause for all her symptoms. Hope you are doing well today and that this helps answer your question. Sending prayers for you and all who are here!
Angel