Chiari Malformation type 1

I have been diagnosed about 6 yrs ago. I had 2 decompression surgeries with no relief. Has anyone else experience these same issues

Hi, i have a 5 mm herniation and have had decompression surgery. My dr only scheduled it after an interview that he discovered i could be expierencing nerve damage to my eyes. I do recommend surgery if you're having issues. Vertigo, cordination, breathing, swallowing, vision issues. I may not be comfortable flying or able to drive on the interstate but i have mostly normal days now. I only take a muscle relaxer on thw bad days. Before surgery though, i was on valium and oxycodone for the pain. I couldnt work and now i work fulltime. I know that every cass is different but i feel like my life would be less than what it is if i had avoided surgery. If that makes sense.

Am new here but not new to the world of Chiari. Was diagnosed in 88' and had surgery in 89 with a shunt for my syrnix. Had a revision of the shunt in 91 and had 10 good years before "the bottom fell out again" for me. Returned to my nsg who diagnosed me with scoliosis, which often goes with Chiari and had two fusions to secure my neck. Lasted a few years then had a diagnosis of EDS along with another failed fusion. This time, am fused from the skull to T3 and although I have restrictions with movement ( Must turn body to turn neck), I have had NO Pain in my neck or upper thoracic region for 5 years. Manage to function well and have had no Occipital headaches since a C2 Occipital nerve root decompression, two years ago. Now, most neurosurgeons operate to decompress Chiari only if symptoms are severe and a syrnix is present, in my case a syrnix covered 80% of my spine and I had complete loss of feeling sensation on my entire left side, progressing to my right.
Never regret any surgeries I have had, and feel fortunate to have the quality of life I do have.

@kjh2017, @giglgirlnm, and @shane656, welcome to Connect. We are glad to have three new members to this rare discussion and thank you all for sharing a bit about your story with the rest of the members of this group.

I hope @luckygirl will join my welcome and share her experience with decompression surgery with you. @giglgirlnm, would you mind sharing a bit about your experience with decompression surgery with @shane656? @kjh2017, it looks like you also may be able to share your experience with decompression surgery. Did it give your relief?

Your "pre-decompression" experiences sound exactly like mine: no occipital headaches, mine were diagnosed as sinus headaches but did have your other symptoms. Was actually diagnosed because I blacked out and fell, hurting myself, while I was bending down, and an MRI was o

@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred by my nl to one neurosurgeon, because of my diagnosis and symptoms and I was not comfortable with his history of relatively few decompression. We then sought a second opinion from a different facility/group of physicians and a nl and nsg there concurred I may never NEED surgery. Confused by the conflicting opinions, I decided to wait and when my symptoms progressed, returned to my original nl for a referral to the chief of neurosurgery @ a neurological institute/hospital. He recommended I should have surgery sometime SOON as I had a large syrnix in addition to a complex Chiari. I had surgery 6 days later and have residual nerve damage to my left side but timing was not a factor here, nerve damage occurred from cord compression years before my surgery.
I recovered quickly from surgery, but was told by my nsg, it may take a full year to "be yourself again"! And, he was right, patience and pacing your activities is the key to bouncing back and attitude, attitude, attitude!

Thanks @kjh2017 for sharing more of your experience. It can be so confusing and frustrating to navigate the waters of differing opinions and recommendations. In case you're interested, we have several active discussion groups about EDS and scoliosis. You may want to check these out.

- EDS https://connect.mayoclinic.org/discussion/eds/
- Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/
- Scoliosis - Introduce yourself and meet others https://connect.mayoclinic.org/discussion/scoliosis-introduce-yourself/

Hi, I am sorry to hear that you are having so many symptoms of this horrible condition. I had very successful decompression surgery twelve years ago here in the U.K. I would strongly recommend that you get yourself a really good surgeon, one with experience in this type of work. The only symptom I had was terrible spasms in my chest. It would get so tight that I was rooted to the spot whenever I had one. I was in and out of my doctors surgery for nine years and it was only when I got pain in my thoracic area that my doctor suggested I saw a consultant. This was because by then I had developed Syringomyelia with six syrinx in my spinal cord. This unfortunately has left me with permanent damage and for this pain I take 120x2 pregablin every day. Please get a referral to a consultant who has a lot of experience in this type of surgery before you are left with permenant damage. Straining is very bad for you. You need an urgent MRI scan as this is the only way to see exactly what's going on in your brain. Best of luck.

With an MRI scan.

Yes, I have absolutely no doubt at all that had I been operated on sooner that perhaps I would not have been left with nerve damage in my back. The pain only started in my thoracic area about 12 months before I had decompression surgery. The longer it's left untreated the worse it gets. Hope this helps but DO find a surgeon who if familiar with decompression surgery.