Tracheostomy…did anyone have one?

Hello Nancy,

I had a trach for about six weeks. I have been lead to believe that once the vent – through the mouth (sorry, I dont remember all the medical termanology) has been in for a certain number of days, the throat muscles or nerves can be damaged beyond repair if it is kept in for any longer, so they then will insert a trach.

[COLOR=red]I was on the vent too long and have vocal cord damage 😡 The trach wasn’t too bad didn’t feel it much. I have a neat scar now though.[/COLOR]

Hi,

I’m just wondering if any of you who had GBS had a tracheostomy while in ICU? [COLOR=”Red”]Yes, I had a trach for about 3 months[/COLOR]

If you did do you still have one? [COLOR=”red”]No[/COLOR]

when/why does the doctors put one in and is there pain?[COLOR=”red”]At about 14 days the vent tube going down your throat thru your [U]vocal cords[/U] starts to do damage to the muscles and nerves. This damage can be permanent. Thus they do a tracheostomy. You are sedated during the process of having a trach inserted for the first time and there really isn’t any pain.[/COLOR]

Also, the doctors have said my friend has the worst case of GBS that they have seen? Is this a typical response? ie maybe they haven’t seen very many cases?[COLOR=”red”]Each person, doctor, etc…has there own opinion of mild, severe, or worse. Their classification is just from “their own experience”[/COLOR]

And were any of your nerve axons attacked? What were the results from the nerve axons being attacked?[COLOR=”red”]I have axonal damage in my legs from my second attack of GBS. It has taken longer to get the pain under control and I have to be careful how much I do standing up.[/COLOR]

Thank you and God bless you for your replies,
Nancy
Castle Rock, CO

Hi Nancy,

This is the worst time for loved ones, on an intellectual level. The doctors are flooding the scean with info, and if you were to spread the info over time, place it where you need to hear it, you’ll find they are trying to stuff a year at least, worth of info, into everybodies brain in 2 weeks. Throw in the emotional trama, and it’s overwhelming in a hurry. Why you are here, no doubt. ‘Worst case’, said by about every doctor who gets a GBS case, is very, very common. That’s a doctor’s way of saying “I don’t have a clue either”. (is this your friend, or your son? the other post made it sond like your son) It’s importent that knowone, especially the patient, to not take ownership of anything being said right now. All speculation. A lot has to play out first, before a lot of the things you have heard, like nerve axons, can really be determined as to what or how the patient will be impacted. The main reason he’s in ICU, is to watch the breathing, and be prepared to take action if the disease progress’. These questions, with the exception of a possable trach and breathing shutting down, are way too far ahead of the game. Whoever is in charge of decisions for this patient, needs to understand that first, there will be no quick, fast turn-arounds. Most patients, from very mild to sever, take at least a year to come around to a do everything condition. That’s an average across the board. There are exceptions to the rule. This includes therapy time too. So, planning and preperation from all the outside people helping him, need to look at situations in the home, job and total picture, because if everything outside the hospital falls into ruins, while just waiting with no action, for something to happen, that will impact his future healing. I’ve said many times, all us GBSers would be 10 times better off getting through this, if life didn’t get in the way. A delicate balancing act.
Another side note on the trach. When a patient has tubes assisting, that are run threw the nose, a doctor changes to a trach in the neck, and most all are done, as far as timing is concerned, based on the patient no longer tollerating it. Surgery is the last thing to do, to provide comfort to a patient. The 14 days Angela mentioned, is about as far out as most will go tollerating those tubes in the nose. Not a damage issue. It’s a comfort issue that will make a doctor take action. Mine was done on day 6, because apparently, I was pretty agitated about it. They needed to settle me down. My trach did more damage to my vocal cords then any tube ever thought of doing. Not because I had a trach, because of the care ever since I got one maintaining it. That’s a healthcare issue, and too soon to even get into that issue. The more direct line a tube makes into the body from the outside in, the easier it is for infections to travel into the body. The trach also provides a not so fast road into the body, like the tubes have. Like comparing a freeway to a back road somewhere. Still can get threw, just not as fast an easy. So, it can be a good thing too.

I was on the vent for two months and I thought it was the greatest thing. I hated the tube down my throat and was much more comfortable with the trach. I don’t have my trach anymore and my scar is healing great. I think some doctors haven’t witnessed very many cases of GBS and maybe that’s why it’s the worst case they’ve seen. My doctors told me that my case was the worst they’ve ever seen too, but I’m not sure how many cases of GBS they had seen before mine. I was in the hospital for 3 months, on the vent for 2 months, had 2 collapsed lungs, a heart attack, was paralyzed from the waist down, and was put on the heart transplant list. Thank God I didn’t have to have the transplant in the end, but what I’m getting at is there are a lot more people out there that has had it worse than me. There’s been some to not make it, mostly because they were elderly though. Each doctor is different and has seen different things and each case is different. The good thing about GBS is the same thing doesn’t happen to every patient. Some patients never go on the vent, some only have paralysis on one side or in one leg etc. Each case is different. About the nerves…..the GBS eats away the covering around your nerves called the myelin sheath and after you begin your recovery so does your myelin sheath. It takes time though. I was diagnosed with GBS in may 2004 and my feet still hurt. I still get tired and sick easy. My neurontin (for nerve pain) makes me feel drunk/dizzy, but the pain is worse without it. GBS is something that takes time. Nothing about it can be rushed…the recovery, the therapy, it all takes time. It’s the greatest thing that has happened to me though. It’s brought my family closer together, taught us patience, and we’re very appreciative of life.