tomygirl said:
I have this problem seriously. This was my first symptom eight years ago. I failed swallow study tests as it shows food is going into my lungs. Please go to an ENT and get checked out. This is VERY serious. I am on a pured diet and am hopimg after surgery, my swallowing will come back with PT assistance.
Vicki McGowan said:
tomygirl said:I have this problem seriously. This was my first symptom eight years ago. I failed swallow study tests as it shows food is going into my lungs. Please go to an ENT and get checked out. This is VERY serious. I am on a pured diet and am hopimg after surgery, my swallowing will come back with PT assistance.
Hi tomygirl, my swallowing improved quite a lot after my decompression and duroplasty, that and much less severe headaches were what improved the most.Hope you have a good outcome after your surgery.
Thank you. I had a occipital nerve block completed yesterday. Six days and counting....I'll keep in touch.
hello there..I also know the annoying thing you speak of lol...I have had this dysphagia for quite some time..it never ceases to emabarass me at the wrong times....for me I do use cough drops but I found that I really like the little starlight mints or little peppermints better...the problem is I suck on them constantly I know it cant be good for me but it actually stops my little coughing episodes...hope this helps and you are not the only one...soft foods help with the swallowing thing too...
I get it sometimes but it could also be a side affect of one of your medications. I only wish I could remember one I was put on for head pain. I got it really bad with that one. I have syringo and chiari so at times I do experience it badly.
Sorry for delay in responding. My neuro doc doesn't think it's related to anything neuro. It may be a gastric problem. I have to see a specialist for that. Thanks for all the input. God bless!
Chiari malformation type I
Headaches, often severe, are the classic symptom of Chiari malformation. They generally occur after sudden coughing, sneezing or straining. People with Chiari malformation type I can also experience:
Neck pain
Unsteady gait (problems with balance)
Poor hand coordination (fine motor skills)
Numbness and tingling of the hands and feet
Dizziness
Difficulty swallowing, sometimes accompanied by gagging, choking and vomiting
Vision problems (blurred or double vision)
Speech problems, such as hoarseness
I have Swallowing Problems all The Time ! .I have had to have Food Surgically Removed from my Throat . This is One Reason I now Wear a Life line button… I Highly Suggest one…Ots Too Difficult to Talk on the .And Even more difficult to Talk on the Phone While Choking !
I too have had aspiration pneumonia and was given a feeding tube to use so that the pneumonia could clear up enough to have surgery which I did on 1/19/17. My swallowing got better for a couple of weeks but it is bad again. Did they open your dura during your decompression surgery? Are they telling you that the nerves are damaged and just won’t heal. I just want to know why I can’t eat and whether or not it can be fixed.
I too posted a query on what to do about swallowing difficulties a while back with no response. There had seemed to be a rash of folks getting swallowing tests done and having results indicating swallowing difficulties but then no follow up with what to do. Surgery is not a cure-all, so what to do?
I poked around where I am at and it appears that there is swallowing therapy available. Of course, I am sure it depends on where you are as to what is available. Stroke, concussion, cancer patients, and others have difficulties and may have therapy. Speech and language therapists have a niche but others provide the service as well. Typically the problem lies in doctors not knowing it is available or thinking that only feeding tube patients and obvious stroke patients qualify. Sometimes that is the case, as waiting lists can be prohibitive and may only be available in larger centers. Of course, with Chiari symptoms it not like they magically go away on there own.
I would be interested in if the swallowing reflexes that I know about for neck and movement problems would assist in that area. Perhaps, I will have the opportunity to find out professionally.
I might suggest to start asking around. I have a sneaking suspicion that true knowledge and skill may be difficult to find. Good luck in finding the service that you need.
You and others who seek and find answers will have to share their results as other people have this same problems and experience potentially unnecessary complications because of swallowing difficulties.
Hi Christina, Sorry I’m doing it this way but I broke my tablet and now have a laptop and everything is so different for someone who’s not very much into technology. I stopped having Aspirational pneumonia after I started sleeping in a recliner chair and have stayed in it to sleep just to be safe ,lungs aren’t so good after 9 bouts of it all up. I wasn’t told very much at all about Chiari or what to really expect ,they did tell me there were no guarantees for any symptoms as they don’t know how long nerves had been compressed. I am having heaps of problems again now but they don’t really want to operate again ,I did have the full surgery, took 8+hrs ,have a piece of thigh muscle covering my brain. My eyes are really bad ,left eye has started moving which is a 1st ,double vision is worse than before and I lose focus and my brain shuts down when it feels like it if I concentrate too long. Still have swallowing issues but not as bad as it got before surgery in 2013 . My biggest problem now is sleep apnoea is back, obstructive is only causing 9 stoppages an hour but central is much worse at 30 times an hour ,I’m just waiting now for results with sleep machine but they can’t make your brain tell you to breathe again so unless it made a big difference I won’t bother getting one, it already feels like a band is drawn tightly around my head so don’t really want things strapped around it, of course if they decide to operate I’ll have to get one as anaesthetics Drs require you have your own machine for your hospital stay or they won’t put you to sleep for the surgery. Good luck and I hope things improve for you .They did tell me it can take up to 6 months to know how successful the operation is. I have found most of my information on the CSFinfo.org site, some of the videos are really interesting. One of the best I think is Dr David Linbrick’s 2016 video called Chiari Malf and Syringo Diagnosis and Treatment. All the best, Vicki.