Below post is NOT from me. Saw it on a FB support group. Wondering if anyone else has heard of this and if so know of any doctors in US familiar with it.
Please read!
This is a long post but I am sharing in hopes to inform, educate and give options to anyone suffering from CHIARI. One of my triplet daughters was diagnosed last year with Chiari malformation type 1 at the age of 22. Her neurosurgeon recommended brain decompression surgery and we followed his advice. This was very painful and it did not come without complications. Caroline did recover and enjoyed about 5 months of symptom relief. Her symptoms came back, new ones appeared and the previous ones got worse. We got new MRI’s and her neurosurgeon said everything looked great on his end and wished her luck in finding answers. I feel like I read so many stories in this group where this exact thing is happening. I didn’t want to put her through another decompression surgery again. That is when I came across Michelle Gibson’s story. She found a less invasive approach at the Chiairi Institute in Barcelona, Spain. I did my research, contacted as many people as I could who had had this surgery and sent my daughters MRI scans to see if she was a candidate. They will read them for free. The Institute was extremely responsive and very thorough. Their research shows a completely different approach. There is a ligament at the base of your spine called the filum. If it is thick, fatty or inelastic it can cause traction or pulling on the spine which causes all sorts of neurological issues and the decent of the cerebral tonsils. They go in and make a one inch incision at the base of the spine and clip the ligament. This is not the same thing as tethered chord. It is an extradural procedure, not intradural. In Caroline’s case, hers was like a tight rubber band, once clipped, she got tension release. Her surgery was about 12 days ago. Her symptoms were, neck and back pain, tension in her neck, nausea and vomiting, muscle weakness, headaches and migraines, excessive sweating, urinary frequency, and numbness and tingling in her hands and feet. Upon wakening from the 45 minute surgery she had immediate relief. No more neck pain, no more tension and no more nausea and vomiting. As of right now she says her quality of life went from a 3 to about an 8/9. The day after surgery we were walking and touring Barcelona. Her muscle weakness has greatly improved as well. The story doesn’t end here. Her triplet sibling, Anna, had symptoms as well. The radiologist and neurosurgeon in the US reviewed her MRI and said no CHIARI. We sent her scans to Barcelona and they discovered a mild herniation and both girls had pre syringomyelia. This was all missed by the doctors in States. Anna decided to have the surgery as well and got immediate symptom relief. Her symptoms were migraines and headaches, swallowing issues, dizziness, balance issues, back pain, excessive sweating, and temperature control issues. She also has POTS. After the 45 minute surgery, which was performed on the same day as her sister, she had immediate symptom relief. Her symptom relief were no headache or migraines, dizziness gone, balance was much better, her vision didn’t go dark upon standing and no more back pain. Her swallowing issues were also resolved. Surprisingly, her POTS symptoms are much improved. Her heart rate hasn’t risen above 95 upon standing since the surgery. We are thrilled with the results thus far. The Institute has been researching CHIARI for about 40 years. The staff were amazing, attentive and caring. I am sharing this post to give people another option to consider and most importantly HOPE! This option may not be for everyone but I urge you to explore. Knowledge is power. I know that many of you are wondering how long you get symptom relief as we are just two weeks from surgery. In my research, I spoke to someone who had the filum terminale sectioning surgery in Barcelona 11 years ago and is doing great! Our situation is a bit unique. They both had the filum sectioning surgery, one was decompressed and one wasn’t. They both had positive outcomes. Everyone’s outcomes are different but my girls have their life back. I will share the link to the Institute. The surgery was not covered by insurance. It costs about $21,000 US dollars. With the help of fundraising, our family and our Church we were able to raise the funds to make this happen. I am happy to talk to anyone who may have questions. Again, I am sharing our story so that there is another option for everyone.