Diagnosed with Tuberculosis in the neck

[sai aravindh]

For background, please see this thread.

https://www.alsforums.com/forum/gen...-als-mnd/27266-swelling-near-collar-bone.html

To summarize, my MIL who was diagnosed with MND in 2009 has now been diagnosed with TB today. It started with swelling in the neck a couple of weeks back. Her MND is at an advanced stage - she is barely mobile, has lost her voice and weighs less than 75 pounds. The TB tumors are growing internally as well and pushing at the wind pipe causing her trouble in breathing as well sometimes.

Would be grateful for any advice/suggestions to deal with it.

P.s: Created a new thread since I thought I had a better chance at getting responses with a more relevant thread title. (Hope admins dont think I am spamming..)

 

[gooseberry]

Honestly dont know what to tell you. Hopefully your mil doctors are giving her appropriate antibiotics. We arent physicians here so cant really offer much advice on a medical condition like this. Als we live with everyday, TB not so much.

 

[lgelb]

I am sorry you have this additional burden. As with anyone else, the appropriate drug(s) to treat the TB hopefully would reduce swelling. I can't imagine what else would. To support her breathing you would probably want a volume ventilator (if a BiPAP, the AVAPS or S9 ST-A) since the tumors probably mean that the pressure she needs to maintain alveolar ventilation varies. The settings should be monitored carefully to ensure her trachea is not getting more inspiratory pressure than it can handle, and that the trigger/cycle synchrony minimizes laryngospasm.

 

[sai aravindh]

I am sorry you have this additional burden. As with anyone else, the appropriate drug(s) to treat the TB hopefully would reduce swelling. I can't imagine what else would. To support her breathing you would probably want a volume ventilator (if a BiPAP, the AVAPS or S9 ST-A) since the tumors probably mean that the pressure she needs to maintain alveolar ventilation varies. The settings should be monitored carefully to ensure her trachea is not getting more inspiratory pressure than it can handle, and that the trigger/cycle synchrony minimizes laryngospasm.

Thanks a lot for the reply. As I mentioned in the other thread, I am from India and here there is very little awareness even among the medical community on providing care for ALS patients. So can you please help me understand what you mean by a volume ventilator.

Actually, the suffocation in recent days has gotten really bad - it is very scary. The doctors have told us that there is no immediate cure for the internal swelling which is causing the suffocation and that it will only subside over a period of months as the medication takes effect.

Also, would it be a good idea for her to have the surgery for PEG/RIG? Unfortunately, I was not aware of this earlier - I guess she would have been much healthier if it had been done earlier. I now realize there is a lot to be gained by researching on ALS care - just not getting enough time as we are running around for various tests and meeting the docs.

 

[sai aravindh]

Ignore my question about volume ventilator. I found out the answer on the net. But is that something we can buy off the shelf or do we need assistance from a doctor?

Generally, what are the things/equipments that can be done/used with minimal assistance from doctors to help an ALS patient at an advanced stage like my MIL. Sorry if I am irritating members by asking such basic questions which I can figure out by searching this forum or the net. Just that we are all somewhat dazed by the recent turn of events to do focused research.

 

[dalvin]

Her doctor can prescribe one and have it supplied through a medical equipment vendor. That way the settings can be adjusted to match her needs by a respiratory therapist.
I guess it's possible to buy a used one, maybe look in the 'used equipment ' subforum, but I really don't recommend it as you'll need support from resp. therapist.