Hi, is there any one in this forum from the UK? I am from the South Wales Rhymney Valley, I'd like to know what Neurosurgeon that they have seen,
Hi I am in Scotland, when diagnosed my gp was alarmed and told me to make sure I got a surgeon experienced in Chiari and that I might need to go to a specialist he knew in Liverpool. I found the Anne Conway trust sight and found a member ms brown in Glasgow. So I knew she had special interest in chiari. Asked my neurologist to refer to her, he felt it wad unnecessary and any neurosurgeon could do it but made a referral to her. She is a ver busy cons and asking for her prob delayed my surgery, and she wasn’t at ward rounds post surgery. There were 5 Chiari patients and 4 different neuro surgeons on ward rounds, all really good and knew about Chiari. Its less rare than it used to be, and I think my neurologist was right that any of the team of neuro surgeons could do it. Ask your surgeon how often and how many ops done for Chiari. Ms brown. Said she averaged 30 to 40 ops a year, 3-4 a month, but like buses, sometimes none then a bunch together!
Hope your surgeon is as kind and approachable as mine.
Alison x
Hi Alison, thank you for sharing your story with me, finally I get to speak to a British person! When reading Americans stories, I can't relate to the medication etc, also I am lucky to be funded by the NHS, I don't know if you have read my story, but I am waiting to see a Neurosurgeon from The University of Wales Hospital, Really I've only had that one episode, I do suffer with head and neck pain, insomnia, and tingling of the arm's. The Neurologist I saw wasn't experienced enough to decide whether or not I needed to be operated on, he said the herniation of 13mm with a kink? He said that he only see about 2 a year, so be glad to see someone who hopefully is experienced! I'm hoping that I don't need an operation, I don't know which neurosurgeon I will see, just that I'll see one with in the neurosurgey unit. Could you tell me some of the symptoms you were having, and It's lovely to hear your surgery went well, and that your doing well, maureen x
I had chiari and a long syrinx in my spine. Affected shoulders and arms with weakness and pain, spine pain, pins and needles over shoulders. Neck pain head felt too heavy to hold up, constantly wanting to lean head on a headrest or my hand. Headache, sensitive scalp and facial pain with eye pressure, vertigo, blurred vision, tinnitus, earache, shortness of breath and fatigue. Surgery cured it for about a year, then has gradually come back this year and very bad. Had MRI 6 wks ago and get results when see surgeon on Monday. Felt quite good yesterday, was active. Today in bed, moving head up from pillow is too uncomfortable to bear.
Surgeon decision on whether to operate is about quality of life and risk. Will consider what you can,t do that you want to do. If surgery would enable you to do it and it is worthwhile for you to do it, then surgery is worthwhile.
For me surgery would enable me to return to work,look after and interact outdoors with my five year old. Drive, housework and socialize. Its worth the risk, question on Monday will be why is it worse and what can be done, might need a shunt ( terrified). But current option of spending several days a week in bed is not acceptable to me. For other people they might be content to be this way rather than risk surgery. I hope I get intervention soon.