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It's been awhile, and a lot has happened since March. For my terrible pain from peripheral neuropathy, I did a trial spinal cord stimulator implant and was approved for the permanent implant, which was done in May. My feet still burn and hurt, but it's much, much better. I had cataract surgeries on both eyes, which has greatly improved my vision. I've had an endoscopy, a colonoscopy, an x-ray swallowing test, and a scope to watch the back of my tongue during swallowing. I am seeing a speech therapist, who's giving me exercises to strengthen my tongue so it performs its job effectively. The ENT doctor found that the back of my tongue isn't strong enough to create sufficient pressure in my esophagus to propel the bolus through, and also found that it has choreiform movement. That means that it doesn't assemble the bolus the way it should, so food stays in my mouth longer than normal. She suggested that it could be a symptom of Huntington's Disease (genetic testing has shown that to be unlikely). So, without adequate pressure in my esophagus, I have to swallow more than once to achieve the pressure. Of course, then the bolus comes to the area of esophageal dysmotility, and starts and stops until it eventually gets to the door to my stomach. Usually it opens, but occasionally it opens at the wrong time, and a little gastric content sneaks up into my esophagus, which is called silent reflux. Yesterday, eating lunch took 50 minutes. First, chew and chew and chew, then gather it together to form a bolus, then comes the slow process of moving the bolus through the esophagus into the stomach. What a pain!
Now, having said all that, I wonder if you've seen any progress in your swallowing issues. Brie, I've learned a lot of medical things over the years, and, like you, I push for explanations if I don't understand completely. I also know enough by now that I understand more of what they say, and most of my doctors have figured out that I don't want them to dumb down what they say. I just return their dumbed down comments with intelligent responses using technical terms. If a doctor doesn't work with me, I move on to a better one. I guess I'm old enough that I can move on if I want to. I've assembled a pretty good team of doctors who care for me. The neurologist has been a challenge because his nature is not very outgoing, and I have to draw things out of him. My wife isn't impressed, but I see the potential. He did do one thing that was in his favor, suggesting that I get another opinion, which led me to a good pain specialist.
I was skeptical about seeing a speech therapist, but I've been impressed with her, and she's explained a lot and moved me along to appropriate tests. She does way more than help kids with speech issues.
Anyway, things are moving forward, maybe at a slower pace than I'd like, but I have hope that I'll not develop worsening symptoms.
I'm glad that you don't have psych problems, Brie. They really can exacerbate physical problems.
Jim
Replies to "@danybegood1, @brie87144 It's been awhile, and a lot has happened since March. For my terrible pain..."
The generator/battery pack is on the left side of my lower back, above the belt line. They want to implant it as close to the spinal cord as possible, to avoid energy loss to the wires that are connected to the nerves. I am a bit of a problem because I'm so thin. I don't have any extra fat to cushion the unit, so I do feel it when I lie on my back or lean against the back of a chair. It can get sore, but I think that's pretty unusual.
Jim
So much has happened since march ugh. I don't even know where to start. After this post I met with the neurospeach Dr which came back normal as well as the video barium swallow test. I also had and endoscopy which reveled a schatzi ring (sorry if I miss spelled that) and weak lower sphincter. He believes the mis to lower esophagus isn't functioning properly or the nerves aren't responding as they should so it's spastic. I also TRIED to have the esophageal manometry test. I failed miserably. I couldn't complete it because they couldn't get the scope thing down with out me throwing up. That was the worst hour of my life. That test is awful. The GI dr said I do have some moderate midesophageal dysphagia.
With all that said, they all refuse to do anything to help me because of my Ehlers-Danlos. So all they have me doing at this point is taking 40 mg of Prilosec 2x daily with 450 mg of ranitidine. That does seem so do anything either. I've resorted to sleeping in a recliner almost sitting straight up. I've restricted myself to almost a liquid diet because solid are just a sure way to be in pain. Not sure what or if they ever do anything.
Just as the refused to do anything, my septum collapse and created s bone spur in my left side of my nose and I can't breath out either side of my nose. Sounds great right? Stupid Ehlers danlos syndrome seems to have the upper hand here. We were trying to let my nose heal some, (I also have a large ulcer in my nose), but that didn't work and now I have exposed cartilage. So next week we are headed to mayo for surgery to get my septum rebuilt, a skin graft, and something for my valve support. Not really sure. Lol sorry
As far as Drs. I really like my GI dr. And my ENT. I have yet to find a neurologist within mayo or out of mayo that I like. They all act like they know everything even when u can show them they are wrong they don't wanna hear it. I gave up on neurology. Which sucks for me because of my neurology issues. I am like you that I prefer they don't dumb down anything because 90% of the time I understand just fine, expect with GI and the Ent. Man they speak foreign languages. It took me over 2 hours to understand my report from the ENT about my nose. The only thing I understood out of all of it was "her nose is severely screwed up". Maybe not so much in those terms but pretty much haha
So that's my chaotic life right now. Hopefully surgery goes smooth so I can get back on track with GI and nothing else gets screwed up along the way.
Man that all sound like a pain! I totally feel for you. My stomach valve stays 1/3-1/4 open pretty much all the time due to the weak valve and the hernia. I wish they would just fix one of the 2. Hopefully things don't start getting worse for either of us. It is awful enough.
Brie
I had similar problems. Ended up with a PEG Tube. Solved digestive and nutritional issues. But it is a big life style change since I can never be able to eat food again.
@fig827
My sister went the peg route. It was a really rough go for her. As I talk with doctors, my anxiety level spikes, thinking of all she went through when she could no longer take anything by mouth.
Jim
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@font-face{font-family:Calibri;panose-1:2 15 5 2 2 2 4 3 2 4;}@jim. Thank you so much for remembering me. If I may ask, where did they implant the stimulator. I'm not ready for this yet, but my daughter might be. I'm glad it has helped you. Any port in a storm I say.
Thanks, Dany