I had my decompression surgery Mar 20, and so - I am no longer a Chiarian. Thank you for the cheers. I am back to normal, whatever normal is at 65 yrs!. Still a little shaky on feet now and again, but otherwise, life is back to normal. Incision was only 4” long. No staples needed. Glued inside. Outside incision stitches now all gone. Life is good again, except I’ve been threatened with incarceration if I resume heavy lifting – which caused my cerebellar tonsils to herniate.
I didn’t present with most ‘chairi symptoms’ except for a few days last Thanksgiving. At 65 I was too old to become symptomatic. Turned out that 4 years of heavy-duty landscaping (lifting and moving large loads of gravel) pushed my C. Tonsils down through my foreman magnum (big hole at base of skull). We live and learn. I was my surgeons oldest Chiari patient.
What I'm fuming about is having read just a few new postings, the issue is clear. THIS SITE SHOULD NOT BE THE PLACE WHERE SUFFERING CHARIANS HAVE TO COME TO LOOK FOR ANSWERS! Chiari specialists should have answered these questions for their patients.
So, the REAL problem revealed is that patients haven’t found experienced specialists. Yet, the NS’ they’ve been seeing, IMHO, are not upholding their Hippocratic Oath – DO NO HARM. They are doing harm because they KNOW they aren’t C. specialists, yet are accepting Chiari patients.
My story: After experiencing what seemed to be seizures for 5 days last TG, I saw my family doc who ordered up an MRI. I was SO fortunate that the radiologist who read my MRI recognized a Chiari. (I have called him and expressed my sincere thanks).
Family doc sent me to a NS at a local, large hospital, which has AWARDS for this and that plastered all over the walls. I’d already done much research on the subject. So I saw ‘Dr. Gregory Howes’, which he pronounced as ‘House’, and all he did was look at my MRI, mumbled nonsense, and told me “we should wait 3 months and then take another look”. I knew he was misrepresenting himself because HE SHOULD HAVE ORDERED A CINE MRI. A CINE MRI reveals the CSF flow in the brain, and reveals any blockages – which is a serious problem. This is what a Chiari does – blocks the vital flow of CSF (Cerebrospinal fluid) in the brain, and even more dangerously, can block the CSF flow into the spine, potentially causing irreversible paralysis.
I returned home, resumed my research and came across an article announcing the recent opening of a Chiari Department at the Mayfield Clinic – hallelujah – just 30 minutes from my home!! Immediately called for an appointment, was kept on the phone for 45 minutes by a young man who, very kindly, questioned me about symptoms. Then he made an appointment for me the following week. Immediately called Dr. Howes, told him I’d found a REAL Chiari specialist who is Dr. Tew (mentioned by many on this forum) of the Mayfield clinic, and cancelled my Mar 19 appointment. I had my surgery Mar 20 the day after my now-cancelled follow-up appointment with charlatan Dr. Howes. Pre-surgery, I put together a file on what a Chiari is and the potential symptoms, and took it to my family doctor, with contact info on Dr. Tew. My family doctor is young and always open to new medical information. He accepted it well, and actually thanked me. Now he will NEVER send CM1 patients to anyone but Dr. Tew, and the radiologist who recognized my Chiari will ALWAYS check MRI’s for Chiari.
So, we are still back to square one, which is, how do Chiarians find Chiari Specialists.
Unfortunately, there are no exams to take to become a C. specialists. Doctors such as Dr. Tew are very few and far between, and his waiting room includes many, many people who travelled from far and wide to see him.
When NS Dr. Tew noted the significant number of patients who presented with CM1, he raised funds to create the new Chiari Department. FYI: (513) ■■■■■■■■.
You could call the Mayfield and ask if they know of any qualified Chiari NS’s in your area. If you do call, say you came across the article online. If my name is mentioned, I will be receiving a call from Dr. Tew’s office to stop referring the Mayfield to folks across the country. (^J^)
This is a link to several C. specialists around the country. Do your research. Ask if a C. specialist is listed your area. Ask advice on finding a specialist.
Clinical trials. These people may be able to make a referral. I found one through Duke in NC, for a friend who lives in Raleigh.
I know two things we all need to do: Never pass the opertunity to educate our family docs on Chairi symptoms - give them a list: Make it mandatory that ALL radiologists automatically check every MRI for Chairies.
Good luck everyone. Thinking of you.
BTW: Yes, I'm bragging, I have to get back to tending my gardens. Have roses to plant, weeds to pull and manure to spread. (^J^)