I just had my surgery a little over 2 weeks ago. I found out about having Chiari 11/14/19 after life long headaches. But in 2018 I started to have double vision and then began to lose my balance. Walking became incredibly difficult and I had to hold on to things, couldn’t look up or around, and think about each step I took. I did take a few falls. I went to many eye doctors, eye specialist, and an ophthalmologist. I was told I needed a prism in my glasses. It never helped and they kept adjusting it, until my glasses were so thick, they touched my face. I was miserable and frustrated that I was getting worse and nothing was helping. I asked multiple times to be referred for an MRI and was told it was my eye muscles. I ended up going to an eye therapist in Ft Worth to see if he has any suggestions. He instantly noticed my eyes and told me I needed an MRI. I found out I had Chiari that day, 11/14. I was relieved I wasn’t crazy and I wasn’t going blind. I met with a neurologist who told me that my eyes had nothing to do with Chiari and I should take medicine to manage my headaches. Then I went to a second opinion who told me I needed surgery. After researching I found an amazing neurosurgeon in Dallas who specializes in Chiari and spines. After getting my diagnosis, I had surgery on 1/13/20. Less than two months. During my pre-op and an EKG I found out I have PVCs with VT. I had to find a medicine that could control my heartbeat long enough for my surgery. Working with my cardiologist, I did. I still had my surgery and was cleared on the Friday before (my surgery was on Monday). It was so stressful waiting to find out if I could still have it. I had a partial craniotomy (where they removed part of my skull), they sliced the outside of my brain to make more room and sewed a piece of a cow heart patch on it ( a duraplasty), then removed the inside part of my c1-c3 vertebrae ( spinal laminectomy), and lastly, electrocautery to remove the cerebellar tonsils. The extension of my cerebellar tonsils were 4cm, yes cm and not mm. My surgeon had said it was the biggest one he has seen and consulted colleagues and it is also the biggest they have seen. I was in ICU for two days and the regular hospital for two more. I had to take a walker home for balance. I am beyond lucky that my mother and husband have been around to help me through the process. I went to my follow up yesterday and my stitches were finally removed! I can wash my hair inn Saturday! After 19 days. I cannot wait!! I am a Special Education teacher and it was so hard for me to read things that weren’t in giant print with both eyes. I would close one to help with double vision. It was also so hard to drive, shop, walk, and pretty much do anything day to day. I will need an ablation on my heart in the next few weeks to fix my heartbeat. I was wondering if anyone has had heart issues related to their Chiari. Also, with double vision and balance, how long did it take to notice a difference(if there was one). Any recovery tips?
You have been through a lot! I have never heard of anyone with a 4 cm herniation (and I thought my 17 mm was bad). I had double vision problems also but oddly not until after about three years post op. It lasted for a few months and then subsided. Double vision makes it very hard to function but I got through mine by wearing an eye patch over one eye and trying to be thankful for the compromised vision I still did have. My major symptoms before decompression surgery were numbness from head to toe, severe neck pain, shoulder and back pain, overall muscle weakness, vertigo. Some of those symptoms greatly improved for me almost immediately and some gradually over the first and second year post op. I hope your recovery is quick and you start feeling better soon. Remember to be patient because the healing process takes a lot of time with this disease. Don’t over do it. Let others help you and don’t feel guilty about it. Best Wishes!
I forgot to mention, during the double vision spell the neuro-opthamologist put me on a steroid after all tests came back negative (ie no brain tumor causing double vision) and that seemed to help clear it up. I was also experiencing nystagmus during that time and it cleared up as well.
Visual processing problems were big for me before and after surgery. Surgery did not help my visual processing. I saw a lot of specialist who were not helpful. By the way, vision problems are totally related to Chiari and how it affects brain processing! But, it does not really matter, as visual processing problems are visual processing problems regardless of whether they are from a concussion or a brain surgery!
I did a lot of vision therapy exercises and am now happy with how my eyes function - no prisms and no eye surgery. It was a lot of work everyday though.
In regards to balance, I developed daily balance and dizziness issues immediately after surgery. I again saw lots of doctors and got no help - just shrugs of “I guess that is how it is going to be for you”. I finally got some primitive reflex exercises through physical therapy nine months later. I was dizzy free in 2 days I kid you not. I put up a posting on this site about that.
You are early in your recovery so take it easy and do not put expectations on yourself. Remember that it is a major surgery.
Thank you both for the information and the support! It is definitely helpful and it feels “good” to know I’m not alone in this. I got to wash my hair for the first time since surgery yesterday, that alone made me feel like a new person. I will definitely be patient, I go back to work on the 24th and I just worry about it being hard. But sometimes life is hard and you just have to get through it! I have a heart procedure on Wednesday (an ablation) which is relatively easy compared to what I just went through. I I’m just going to take it a day at a time. Thank you again.
@Ktbelcher God bless you! I’m so happy to hear you were able to get through the surgery and post-op are doing so well! What an incredible testimony you have to share. My 11 yo daughter was diagnosed with Chiari in August this year. She suffers from daily headaches and neck/ back and over-all joint pain. She also has severe problems with her vision, sometimes double sometimes just blurry. Most recently, she has lost most of her peripheral vision. She also has vertigo and dizziness. We are still navigating through lots of hospitals and specialists— most of whom want to point to migraines and absolutely nothing to do with the Chiari. Although her herniation is mild in comparison to many here (6 mm), I know that the Chiari is playing a huge role in her daily struggles. She has also been clinically diagnosed with EDS although the neurologists we are seeing now want her genetically tested to confirm. Please know that reading testimonies like yours give me hope that one day in the near future we will find a specialist that will help her too! Take it easy, enjoy the little things ( like your nice clean hair ) and thank you for sharing! May God continue to bless you! Kindest Regards, Angel
I researched specifically for a neurosurgeon who specialized in Chiari. See if you can find one in your area! I had to reach out to someone in Dallas. He is fantastic. I will be thinking about you and your daughter. I can’t imagine going through this so young. But kids are so resilient and medical professionals are so brilliant! I would look for someone who knows what it is and has treated it multiple times. Which I am sure you have! I am praying you will find someone great and she will be able to get rid of these symptoms soon enough. I have already noticed a big difference in my balance and have started to notice a slight change with my vision. My headaches have been gone, minus the pain from the surgery. There is so much hope for her! Keep in touch. I will be praying for her.
@Ktbelcher Thank you so much for your encouragement! I have searched everywhere here and there is one excellent expert on both Chiari and EDS, alas he only works with adults. Most recently I’ve had a family from church that went to the Mayo Clinic in Minnesota. Although her son did not have Chiari, he did need Neuro-opthomology and eventually brain surgery. They had a similar experience with the “best” hospital in our area. We live in SC. She asked around and even shared some of Hope’s history with the neurologists there and they seemed positive that they could help. So… tomorrow begins the phone calls and financial aid paperwork! I’m hopeful and frightened all at the same time. You said it exactly right— being a child makes it so much harder, in my humble opinion because she doesn’t fully understand what or why this is happened. I’ve prayed uselessly for God to take it from her and give it to me! My faith, and more importantly, her faith is strong…I hope we may be on the right track with Mayo. Prayers to you and definitely keep me updated on your recovery! God bless you and give you all the strength you need in the coming days! Angel
@Ktbelcher just thinking of you and saying a prayer that your first day back to work goes well! Please let us know how you are progressing. God bless you and continue your healing
Best wishes, Angel
Hi, I was reading your post about finding a great doctor in the Dallas area for Chiari. Would you mind sharing his or her name? I cannot seem to find anyone decent who takes my insurance.
Life back to work changed a lot in the last few months! Thanks Covid 19! The day I was supposed to go back to teaching, they switched us to online learning!!! So I still haven’t been with my students(in person) since before my surgery in January. But my symptoms have almost completely improved! No more headaches, my vision is almost back to normal, my syrinx is GONE, my balance is back…things are amazing! Life is good and I feel so blessed. My 3 month scan (I took it last month) was looking great. Thank you!
How is your daughter @myangelface ?!
Hi dear, we’ve been in the middle of a move so I apologize that I haven’t been on in a bit. She is ok. Like everyone, good days and bad. She started with CBT last week at the neurologist request but the therapist isn’t familiar with Chiari or EDS and I’m not sure how it is supposed to be helpful but we’re trying. She is really adverse to going bc she thinks that it only justifies the drs who have said it is all in her head so, that is a little frustrating. Being out of school has helped some— less stress I suppose. She is still really struggling with sleep, vision and chronic pain. She doesn’t talk about it as much anymore bc I think she has pretty much lost hope that any one can help. Thank you for checking in, I really appreciate it. BTW, I am going to create another post. My step daughter (her sister who is 27) has recently started having some pretty severe issues and had xrays done… there are some strange images. Also just found out that she has what sounds to me like tethered cord!
Wonderful news💜 so glad you have found some relief!