Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (24)

Sep 26, 2017 · Small Fiber Neuropathy in Neuropathy

Sorry my life had been up in shambles lately. I haven’t really found any options for my neuropathy. The neurologist at mayo in Az told me it’s not a condition he will treat until they know the cause. Which knowing the cause is kinda impossible since I have so much else going on. I need to go back to the neurologist but won’t be doing that till I recover from my recent surgery.

Have you found anything useful or come across any ways to deal better?

Sep 26, 2017 · Septoplasty question in Ear, Nose & Throat (ENT)

Hey everyone. I just had a Septoplasty. Bilateral inferior turbinate submucosal reduction and outfracture. Nasal valve surgery and bone spur removal 13 days ago and everything has been going great. Except I accidentally sneezed really hard tonight before I could catch it and now there’s a tear on the inside of my nasal wall. It’s not very big at all and it’s so late I know my dr isn’t available right now. But this shouldn’t be much to worry about right? It burns a little cause it’s open but nothing unmanageable. Anyone had a tear before after septoplasty? Did they have to restitch it? I’m only asking cause I live 6&½ hours from my surgeon. I’d hate to go back but would if I needed too. Couldn’t find much on how common it is

Thanks in advance. Briana

Aug 24, 2017 · Esophagus issues in Digestive Health

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.


Mar 29, 2017 · Esophagus issues in Digestive Health

@danybegood1 wow you have had a rough road. Your doctors sound just as bad as he ones here in Albuquerque. I was divorced by 2 doctors who didn’t have time for a patient like me here at home. The first 6 months with mayo they kept telling me maybe iall my issues are psychological. I’m probably the most annoying dreaded patient out there lol. I won’t take no for an answer and won’t let them push me off to Psych when I had a perfectly normal psych exam. I’ve definitely learned to speak up and not let them push me off. Especially cause I am traveling there every month and it’s been expensive, that’s not even including my copay and deductibles noticed that when I annoy my consultative medicine doctor, he gives me whatever test or referral I’m badgering him for lol. He also doesn’t like that I am well versed on so many things medically because he can’t just ramble off something I don’t understand and be okay with it. If I don’t understand I make him explain it. Whatever works. I hope you find answers

Mar 29, 2017 · Esophagus issues in Digestive Health

@squaredancer Sorry I missed this earlier, going back to mayo. I have appointments the 24-28th of April. They have to squish them altogether since I live out of state.

Mar 28, 2017 · Small Fiber Neuropathy in Neuropathy

@lisadog33 I have a lot of the same issues. I was diagnosed in July. But like you said they said my other issues weren’t apart of my SFN. Then I was diagnosed with chronic fatigue and bladder issues with it releasing it self to not being able to go at all. And diagnosed with IBS. I have a whole bunch of other things going on too but after being with mayo for 16 months, they still had no answers. And they weren’t treating anything. My insurance found me another opinion and I was finally diagnosed with AAD-EDS (articilo-autonomic disorder/ Ehlers- Danlos spectrum disorder) which explains everything I have going on. From what I was told is that small fiber is caused by something. But trying to pinpoint it is the hard part and sometimes they never do. I was blessed when my insurance did an evaluation over my medical record when I asked and got me to the right doctor to be diagnosed. Have they looked for POTs? I have POTs and they said it’s lile your body is stuck in fight or flight and it makes everything work incorrectly. Like my bladder, heart, bowels and hearing, etc

Not sure this will be much help but please if you need to reach out.

Mar 19, 2017 · Esophagus issues in Digestive Health

@squaredancer thank you! I found it on google with the full name. That’s another thing what I’m having done when I go back. Didn’t know what it was called though.

Mar 19, 2017 · Esophagus issues in Digestive Health

@squaredancer Tim, thank you so much for sharing your story. You really helped me make sense of why they sent me to a speech therapist. I’m having the MBS video esophagram next month when I go. What is FEES?