Seeking Specialist Help for Hernia and Vocal Disorder

So, I've had a hernia since September but it's grown and gets hard/soft for days at a time. My ENT nurse and surgeon are referring me to a hernia specialist. I've also just been diagnosed with a rare, incurable vocal disorder (I haven't been able to talk for 9 months) so needless to say I'm pretty overwhelmed right now.

Hello Becrhomat.
Sorry to hear about your problems but I hope that you get your hernia fixed soon.

As for the muscle tension dysphonia, I was looking forward to hearing from you as to how the treament went. I understand that some people are able to get some relief from the condition with injections but that might be just the rhetoric that the medical profession put out to passify sufferers.

Please let us know how things go.

Best wishes

Bill

They thought it was muscle tension but I have abductor spasmodic dysphonia.

Abductor Spasmodic Dysphonia

"Muscle movements or spasms cause the vocal folds to open and not vibrate. The open position of the vocal folds also allows for air to escape from the lungs during speech. As a result, the voices of these individuals sound weak, quiet, and breathy or whispery. The spasms are often absent during activities such as laughing or singing."

No known cause or cure

Hi becrhomat,

So now what? If there is no known cause or cure, what do the doctors suggest, or do they suggest anything at all? Can they do anything? Is there a study about it that someone is working on to try and understand what you are dealing with?

Do you have any plans on what your next step might be?

I have never heard about this situation before. I wonder if there is any other information on the internet?

There are research teams. Not many people have heard of this. An estimated 500,000 people in North America have this...I don't know for the world....I live in Canada where less than 500 have it. Botox every 3-4 months is the only known treatment.

I just was reading some information I found while researching the internet: https://www.nidcd.nih.gov/health/spasmodic-dysphonia

I have an abductor which is harder to treat. I'm not here to defend myself... I posted because of a hernia... less than a year old colostomy and my recent vocal diagnosis is overwhelming me. I have hardly left my house.

Hello Becrhomat.

Of course you do not need to defend yourself in any way on this site. When we hear of something unusual like this, some of us trawl around to try to understand the conditions better so that we can try to be helpful. This may or may not be inappropriate in cases of incurable conditions but it shows that we care enough to try to do something.

In one of the articles, that they were using synthetic speech to help people with this condition to comunicate effectively.  I presume that this is the same sort of thing that Steven Hawkin uses to good effect.

As for the Hernia, I can certainly empathise with your plight on this one. Mine has been gradually getting worse over time and I've had to contemplate what to do about it when it becomes unbearable or, in my case, unresponsive to my own efforts to cope with it. I am reluctant to go down the surgical route because that can cause more problems than it solves so I'm stuck between the proverbial rock and a hard place.

I do hope that you can find a solution to both your conditions but if not, I hope that you will be better able to cope living with them.

Best wishes

Bill 

I hope so. I'm hoping Botox works

I don't want another surgery, but my ET nurse and doctor kept bringing it up. When it gets hard, I leak every day. My ET nurse gave me tips, but it seems stubborn when it's hard and nothing I try seems to prevent leaking. I can sometimes whisper, so luckily, I was having a good voice day and was able to whisper some questions. Apparently, this hernia specialist is in high demand and it'll be a wait to see him. I have no idea when. I'm sorry about my voice. I felt not believed, and this has all been so hard I didn't want to explain myself. That's all I feel I do is explain cause no one's heard of it. I did find a support group on Facebook...a couple thousand worldwide are on it. They don't want to hear about my colostomy though. I have a dentist appointment tomorrow, and I'm so anxious. I hate going anywhere and not being able to talk. I have a tablet with text to speak; I'll take it with me.

Hi, I just read your post. I am so sorry that you are having so many challenges. I hope that you are able to find some relief and the suggestions from nurses and this site prove very helpful. Take care and know that prayers are being sent your way. No one understands this life like another ostomate. Sincerely, LadyHope

Thanks... feeling better today. Going to try and get out today.

Hi B, my name is Marsha, and I understand how you feel... By no means do I want to "play" I can top this, but I can empathize with you about the juggling of both old and new medical issues that challenge your day-to-day life.

I had my ileostomy (from Ulcerative colitis) back when I was a kid, of 15. That's 50+ years ago. Medication I was on caused osteoporosis and degenerative disc disease, so I was in a back brace for a year... That was difficult to manage with my ostomy. Fast forward a few years, I'm in my 20's married, managing to work, but kept falling.... Pain in my feet was awful... Add arthritis, then orthotics.... Ok, I could handle anything. Fast forward again.... My kids were in school, as was I, but I kept losing my voice (not good for a would-be teacher). I have a paralyzed vocal cord and had to learn how to speak in a much lower pitch. But I did graduate and get a job...

Soon after, a blood test revealed that I had high liver enzymes.... (Hep C hadn't been identified yet, so they called what I had non-A, non-B.....and life goes on.

First one of my sons comes down with UC (at 12), and that was awful. I was in school and my marriage was falling apart. I went for a liver biopsy and found that I had "fatty liver". Ok.... Liver disease..... Then 2 sinus surgeries and diagnosed with diabetes (insulin dependent). All those years on steroids blew my pancreas. And then in 2008, I wasn't able to walk steps.... Necessary for my job... Spent a year trolling specialists.... Not... PASD, not compartment syndrome, not vascular..... Finally had to retire and went on disability. I hobbled for 3 years, and then begged the doctor to put me on medication for PAD.... It helped some, but because I have good pulses in my feet, can't be the disease. Next.... Came kidney stones, not the uric acid ones that I'd had off and on for years, but bacterial ones that needed surgery to remove... (Did that 2x with many complications) Sigh.... I'm 68 now, I see more than 10 doctors (I call them invitations)..... And life has become more difficult. The last three years have been one thing after another, but I went through treatment with Harvoni and kicked the Hep C virus.... I hope. Then a bout of high blood pressure, followed by 6 weeks of vertigo..... Went through Vestibular treatment (inner ear) and now hope those little wandering crystals stay put. My purpose in writing to you... Is to let you know that there are others who are also going through a difficult time. You have a choice..... Live the life you're in..... And find as much good in it as you can. Throwing in the towel (giving up) or waiting until things are better hasn't worked for me. I just get sad and depressed and think of all the time I'm wasting. Be kind to yourself, pamper yourself..... Look for things you enjoy doing, and do them!!! When you're enjoying life, people will notice, and you will make friends. Will you find the man of your dreams? Perhaps not, but he's not going to appear on your doorstep either. I currently see more than 10 doctors, and it is a challenge to manage all the appointments, tests, and conditions..... I am also alone, but do have friends (not family) I can reach out to, and do. You have to like yourself..... Despite the newly found "flaws". Personally, it's a miracle that I'm alive, that I had children, and that I managed to do most of the things I wanted to do (travel). But that's a story for another time. Best of luck to you. Marsha

I realize everyone has their own story, but no one's story is made less to them because someone else has it worse. This is all new to me, and right now I'm having a hard time adjusting, but I do know that this is temporary. Right now... I'm trying to gather what information I can, and just today I'm getting out of the house. As much as it's easier to stay home in my house, I know it's not the best for me.

Big hugs to you both - you've both had a hard time of it. It can be especially hard for having to go the round of doctors who are supposed to "fix" you ... and they haven't got a clue what you have or what to do for you! Total frustration, I'm sure, and I feel for you.

No topper stories, just sympathy and virtual hugs!

Thank you

Hello, I am Keith.

I have had 2 hernia operations. I have a colostomy and a ileal conduit. Wee aroma. I had a major compression of my spine and was left for nearly 6 days before they looked at my MRI scan. Then I was rushed in the middle of the night to another hospital. They operated straight away, but I suffer major nerve damage. I could not feel to poo or wee. This happened after the operation. I tried to carry on, but I had 2 major falls that hospitalized me for 3 months. My operation was in August 08. I lost my complete feeling for my bladder control. I had a pubic catheter in Jan 09, but in Jan 12, I lost the ability to poo. I had an urgent colostomy operation. Then in July 12, I had a ileal conduit. Wee aroma, as my bladder was infected. Then I had a major hernia operation, it was bad. Just after that, I had a septic bladder, so they removed that. They made a video of that operation. Then I thought I felt a little lump among my scar tissue. They were incisional hernias, so another operation in July 14. Then I had to have a colostomy revision, as the aroma had gone warts non-stop bleeding sore. I have a very long scar up the middle. I have more lumps now, but it's my back. They said the operation on my back never put support in, so the back has so many degenerative changes they can't cope. I have to have a neuromodulation unit put in my back, it's a disc and battery. It breaks up the pain signals to the brain. I am not happy because it doesn't stop the back from having degenerative changes. I am disabled as well. I sued for damages and had a big out-of-court settlement, as I was sent home twice and when they did admit me, they just neglected me. I would love my life back. I had a very active life. I was 50 when I got cauda equina syndrome.

But you are so brave. If you want, I will be your support partner. You have gone through so much. Yours, Keith

Hi Keithy,

Welcome to MAO. You sure have gone through a lot. Glad you're here to help the rest of us.