Hi everyone,
I have been reading for a while but haven’t started a topic yet. I live in New Zealand and am a rarity as our population is so small . Just over 5 million.
I had a successful decompression surgery (herniated 8mm, syrinx to middle back with residual unknown damage). I take Nortriptyline to help with nerve damage done by the syrnx.
Recently I have started having issues swallowing and am getting food stuck in the back of my throat. I am seeing a specialist at the beginning of March and would like to know if anyone else has developed this issue?
Thanks,
Emma
Hi my neurosurgeon had said that she she has seen many Chiairi patients who have issues with their gag reflex. So you might be in the same issue!
I think I have read on some of your prior posts that you still run (jog). With Syringomyelia ( your syrinx) you are supposed to limit physical things like that. Possibly, your doctor has not discussed this with you. Everything even down to bowel movements put a strain on spine and syrinx area. How do you benefit from not doing lifting, jogging etc??
It’s like this, you might even be able to physically lift something right now, or possibly _you can _ physically still jog.
What you gain from not doing this is prolonged health, and prevention of being in a wheelchair.
With syringomyelia, it’s like flipping an hourglass upside down. Each case is different and neither one of us know to what extent or how much time we have left. I don’t mean to be gloom and doomy on you, but probably start to monitor what you are lifting, doing, physical activity, etc. It removes years, and quality of life if we don’t. Hope this helps you.
So sorry…just got mentally side tracked with writing other post and forgot to reply to swalling issue. This is also normal with syringomyelia, but could also be affect of one of the medications you are taking.
I have this issue sometimes now, and had it really bad when I was on Gabapentin.
I have had the swallowing issues for years that they thought was my thyroid. I will be having my decompression surgery on the 24th
Thanks for the replies. I don’t run but do work with a personal trainer. He is great and knows my needs. I will be seeing a specialist on 6th March.
I had this issue. When I was eating it was like food went to the back of my throat and I had to concentrate in order to swallow. I had decompression surgery in December and have not had the trouble since. My surgeon says it is much more common with pediatric chiari patients. The portion of your brain affected by chiari controls breathing and swallowing so it make sense.
Hi, I’ve had this problem since before my decompression surgery which was almost 2 years ago. The swallowing problem is one thing that has not improved at all. I choke on water the worst. It will come out of nowhere. But I do choke on food too. I was told that it was from the pressure of my brain up against my brainstem against the nerve that controls swallowing. But, I am not sure why I am still having problems. Part of it now is probably due to esophageal reflux and part of it is probably due to out of control thyroid issues I am having.
Thanks, it is good to hear from others. I am seeing an ear, nose throat specialist on 6th March. It will be interesting to hear what she says. She knows my case as she has been dealing with my sinus issues.
I have the same problem. 3 years postoperative and still have it from time to time. I try not to panic and concentrate on that particular task.
Hi, I have not had surgery. I tend to drool a lot. As a child had speech problems, an open bite. At 40 I got braces to close the open bite, the dentist said I had tongue thrust. I was sent to an ENT she said I had the highest palate she had ever seen and I had a spinal cord injury that caused the tongue thrust. I know now it’s from the Chiari, compression of my spinal cord. I snore terribly, wake up gasping for air and my chest feels tight and esophagus hurts. I find myself choking on my own saliva at times, clearing my throat after eating or drinking. The speech problems, hoarse throat and gagging come and go. I wonder if I also a a malformation of my face and jaw too. I do have a crooked jaw and upper teeth. On one of my MRIs it mentions periodontal disease as the cause of degenerate disc changes in my Cervial spine and moderately uptake is seen focally in the maxilla and mandible. I wear a collar a lot and it helps the pain.
Not sure if you been checked for your gag reflex, but my Dr says that many with Chiairi has issues with it. I just had swallow test done and the tech also says I have mild issue with my esophagus as well, but more so with solid food. This might be related ascwell.
I am being checked over by a rather frightening throat specialist on Monday.
I have always wondered about swallowing tests. If something abnormal appears, which some people have indicated has happened to them, is there something to do about it? Retraining swallowing techniques? Strengthen cervical musculature to better align the throat to maximize swallowing abilities, positions to avoid, posture to adopt? Just wondering if anyone could weigh in on that issue.
What exactly does it mean ‘swallowing issues’? Silly question, but I have experienced a delayed swallowing issue. I don’t choke, I just can’t swallow on command or sometimes in public. It’s so bizarre. I just thought it was one of my personal quirks but now I wonder if it has anything to do with Chiari. I can’t have anyone look at me when swallowing and when I’m alone I can’t swallow on command, I usually have to pitch my fingers or pinch until it hurts a little to take the attention off swallowing. Weird, I know. Just quirkiness or maybe a swallowing problem? Lol…
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It does sound Chiari related. I am a slow eater as it takes me so much longer to swallow and I can’t do big mouthfuls.
That is exactly what happens to me. So glad I’m not the only one, but sorry you go through this too. Did you have the surgery?
Dizzymermaid - same thing with me, I can’t swallow on command and I can’t swallow in front of people (okay, I can, but it’s very difficult). Also I have a hard time with it if someone if looking at me. I do much better alone, which makes it all sound like it is from anxiety or some other psychological cause but I am sure it’s not. I had a swallow study done and it showed no esophageal problems but there was a delay in something along the line of the swallowing relfex kicking it and one other problem (don’t remember what that was). Both of these issued pointed towards a neuro-muscular problem. Despite that I can’t get any doctor to take this issue seriously. It is affecting the quality of my life in a terrible way!!! Not officially diagnosed with Chiari, just shown as in incidental on my MRI, again, I can’t get a doctor to take this seriously or at least look into it.