Chiari Online Support Group


I am being referred to a neurosurgeon. I have had a horrible time getting a neurologist, and now a neurosurgeon. Seeing a neurosurgeon before I finally see a neurologist. This whole thing has been a mess. I woke up in January with the worst pain around my trunk. I thought I was going to die in all honesty. My doctor thinking my symptoms were part of lingering issues with pneumonia decided to wait for more tests. Well, about two months ago my aunt was diagnosed with MS, and my symptoms were mimicking MS. I had an MRI, and I was diagnosed with Type 1 Chirai. I have been fighting ever since to see a neurologist. I finally set up an appointment, but I also knew the pain around my trunk was becoming intolerable. I finally convinced him last week to give me an MRI. My PCM finally did just that. This afternoon he called me with the news, and is trying to find a neurosurgeon ASAP. Well, freaking out I decided to go down the dark rabbit hole that is Google! I have now convinced myself I will die in 10 years, I will be paralyzed before my death, and that I will feel pain every single day for those 10 years, and there is no one out there that can help. Has anyone lived past this so called magic number with syringomyelia? I am usually sickeningly cheerful, but even the most cheerful have bad days!

You said it! The dark rabbit hole that is Dr Google. To paraphrase something said by one of my very knowledgeable colleagues: Dr Google is useless for anything more than to help you formulate questions for discussion with your own doctors, face to face, those same doctors who have studied for many years and earned the right to diagnose, treat and dispense advice.

So two things. Please take a look at the information and resource links that we have in our Chiari Info for Members section. Secondly, there is also a link in there for the Ben's Friend's Doctors List which you may like to look at to see if there is a neurosurgeon there that is recommended by our members. The AANS (which is linked in the Additional Resources page) website is another place to look.

My understanding is that the presence of a syrinx (syringomyelia) is one of the main indicators for surgery because it is unrelieved pressure on the nerves that can result in permanent damage. Also, again, take a look at what the AANS page on Chairi says.

Hope you get an appointment come through quickly. Kindest, JulesG

Well, every case is different as you know. I too have syringomyelia with 2 syrinxes. My neuro has said there is only a small cervical one since decompression. It truly is depressing at times and other days not so bad. I don’t know about the 10 year thing as I have read too. My neuro is great, although incredibly evasive with bad news. (can’t say I blame him because I don’t handle it well) for me death would be better than sitting in a chair the rest of my life. I can tell you though, medical technology is incredible and keeping weight off with help very much as well.
With my current weight, I am no means thin, but I am at a healthy weight. When ever I start packing on the pounds, the Chiari and Syringo exacerbate incredibly. So, that is some of the best advice I could give you. I was going to join a Chiari group here in Michigan, but then seen it leaned politically in one direction. So, decided not too. Like you, I have been made aware of my condition and even to this day wake up freaking out sometimes.
For me, the part that gets me is there is no way out. Most things in life have a redo or a way out. This I have to bear with no way out. Then, it is hard because my family gets tone deaf after while. To answer your question, I’m not sure that 10 years is a correct parameter. I can tell you though, to alter your lifestyle (no lifting, jogging, limit stress and a host of others). But do keep your chin up… :bouquet: go get your nails done, hair done, get out of the house sometimes and I guess just let it create better bonds with your family and the people around you. That is what I try and do. Hope this helps you :slight_smile:.