Tracheostomy ????

I would like more information on making a decision to have a tracheostomy when you have Progressive Bulbar Palsy ALS. How long can a person with bulbar ALS live on tracheostomy? What will be the quality of life for that person? Use of long-term mechanical ventilation with tracheostomy is briefly discussed. Is it wise for a person with bulbar to get the tracheostomy?
--- Joyce ---

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Hi Joyce,
My name is Janine and I spend a lot of time lurking on this site but submit very few comments. I did want to reply to yours. My father has ALS. It seems to me that every PALS needs to make the decision somewhere along the line " to vent or not to vent"

Every year ( I think) our chapter ( Philly , PA) has a ventilator conference. We were unable to attend, however the clinic had a video of the conference. We found it to be extremely informative annd very helpful in the decision making process. It covers not only quality of life of the patient but also the type of care required to maintain the ventilator.

I would suggest contacting your local clinic to see if they have a video of it. If they don't perhaps they can contact the Philadelphia chapter. Then the patient and anyone who may do caregiving should watch it together.

There is another type of non-invasive ventilation out there called a Volume Ventilator. It does not require a trach and the maintainence is not quite as intense. If you Google Dr John Bach you should find info on it. He also wrote a book that is available on Amazon.

Good Luck to you. Sincerely ,Janine

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Janine, Thank You for your comment. My daughter has Bulbar ALS and she is on a BiPAP now. The BiPAP is an invasive ventilation. We have all the books and also the Living With ALS Video Series. They talk very little about Tracheostomy. I undersatand that Hospice will not come in and help if she is on Long-term Tracheostomy. I have read that only 4% of patients undergo a tracheostomy for mechanical ventilation. This is very few. So, you see I just wanted to talk to someone who could give us information necessary to make a decision that is right for her and the family. I know that each person is different. But why only 4%...... There has to be a reason. This is critical and I feel that we need to be informed. We need to understand..... what this means. Thanks, Joyce

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Dear Joyce,

To trach or not to trach is a personal choice as you know. You may be able to use
a bipap machine. It really depends whether it is O2 or Co2 you have trouble...
However, trach is useful if you are planning to use a vent not just for
oxygen intake but also carbon-di-oxide exhalation. My father (75) was diagnosed with bulbar
ALS in May 2006. He came home twice fromt the hosptial but passed out due to Co2 retention.
So, in june 2006 he got a trach. The trach helps him as he uses the vent at night
to help taking out the Co2. His speech is going but he is still mobile... and is weaker by the day.
It is really hard to know how long a person will live with a trach. Probably, for a very long time
if there are no other complications such as aspiring.

I hope this helps.

- Padma

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Thank You Padma,
At our last visit to the MDA\ALS clinic, a respiratory therapist came in and talked to us. She was very good and gave us the facts that was needed. There are many choices and it is important to get as much information as possible. I know one thing the BiPap plays a very important part in the increase of survival and the quality of a persons life. Again, Thanks -- Joyce --

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Hi Joyce,
My mom also had Progressive Bulbar Palsy ALS and she decided not to have the tracheostomy. she choose quality vs. quanity. I am not here to influence your decision, but wanted to point out a few things her doctor shared with me: 1. If you chose a tracheostomy and later decide to remove, it actually can become a major process, including legal issues to have removed. 2. How much money do you have? ( not interested in you sharing this), just a true fact that the cost of care will sadly play an influence on somes decision. Additionally, you will have probably have to have nurses help you instead of Aides, which is certainly more expensive. 3. My mom used the bi-pap and was unable to speak without a device, during most of her illness. Als hit hard and kept on hitting, from her first major symptom, she lived 25 months and we were blessed that she was able to use her communication device to the last day. I am told, it can get to the point where the ycan no longer communicate at all, perhaps not even able to blink.

Not sure I help, but wanted to at least let you know the few things I knew.

I wish you strength, and please show your love to your daughter for there is never enough time. You will be stressed and frustrated, but when God id ready, he waits for no one.

I am here if you shall need.

Stacy

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Hi Janice.

Yes, it depends what part of the body the bulbar ALS has affected. One has to decide about the trach depending on the case. My father passed out and after many tests, they also did a blood gas test and noticed carbon-di-oxide retention.

My father speaks okay but can still walketc...

My father has trouble exhaling carbon-di-oxide, the neurologists at the university of pittsburgh suggested a trach. There is plenty of information out there. My father uses a vent mostly at night... and his right diaphragm is damaged. In my father's case I don't think a bipap would have helped.

On 9/11, I took my parents to India because it was my father's dream to go his birth place and spend some time with his siblings and my grandmother... My parents are still there. I made all the arrangements for nurses, doctors, home care help for my mom from here and read the IVUN website and learned a lot about flying etc... I battled with airlines, doctors for referrals etc
and finally we made it. It was a bittersweet experience. I hate for my parents not be here with us but I know they are happy to live in their house and some one always drops in... So, I visit India every other month.

Now, I'm just a rocket scientist involved with the ALS families here. I volunteer for both ALSA org in LA and extra hands ALS in OC/LA county. Extra hands was tremendous help, in that they had high school student volunteers visit once a week the patient/family and would help with chores such as washing the car, or vacuum etc just day to day stuff that are no longer on our priority list...

Good luck to you Janice and I'm sure you'll choose what is right for you. Talk to pulmonologists, neurologists and check out IVUN website as well..

I have collected a lot of information and if you need to contact me - padmavaranasi@earthlink.net

- Padma

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Joyce,

I would like to give you my opinion. First I was diagnosed with Bulbar ALS on February 21,1993 by the VA Hospital in La Jolla, California. Then confirmed by Dr. Richard Smith of The Center for Neurological Study about two weeks later. I went through all the typical symptoms of Bulbar ALS. Excessive secretions, emotional instability, loss of control of tongue. When I began having difficulty breathing my wife and I began discussing life. I was not ready to go. The year was 1999 and I was 39. On May 31, 1999 I was admitted into Scripps La Jolla. I was released from the hospital July 13. The time in the hospital was not enjoyable. However, the last seven years have been wonderful. I have seen all my children turn into adults. I enjoy life, going to the movies, sporting events, family occasions and visits from friends.

Steven Hawking has lived on a ventilator for over 25 years! With the science of today I fully expect to walk among the Crowds, down the beach and into church. It is going to be difficult at times but also rewarding.

Sincerely, Frank O'Gara

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Stacy,

The blinking of eyes is not controled by motor nerons. Unless there is another problem ALS will not effect the ability to blink. I believe all Facial muscles are not effected by ALS. I know mine have not. I have E Z Keys and type with a switch that is by my cheek.

Frank

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Frank,
By no means am I a doctor, this was what was shared with us by a Speak Therapist at Helen Hayes Hospital in NY who handlesmany ALS patients.


I can attest to only how my mother lived and I hope everyone with horrific disease makes the best decision for themselves.

All my best,
Stacy

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To Trach or not to Trach. I understand that each person is different. It is also a personal choice. My daughter and her husband will make that choice and I will stand by their wishes. I just wanted them to know all the facts, before they made their decision.
This is Thanksgiving Day, so I want to Thank ALL of You.
Thank YOU for reminding me I am not alone.
Thank YOU for helping me to have courage to face whatever will be.
Thank YOU for a warm heart and understanding.
And Thank YOU Frank, for giving me encouragement.
God Bless YOU ALL --- Joyce ---

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You know sometimes I wonder at the way things evolve. After I read the posts here this morning I received an email from a PALS with the URL http://www.bluepete.co.uk/. For some reason I did not wait, I went right over to see this site. It answers so many of your questions in a positive and informative way. Please give it a read, especially his pages on A Right to Choice. I think you will agree that this is a Thanksgiving Day gift. Oh, and I must thank my friend Bobby for sending me the email.

Ole Chuckles

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Frank,

Did you grow up in Gardena, California during the 1970s? If so, please contact me.

Sincerely,

Scott Sather

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