Total laryngectomy

Hi there Scamp, and I hope you're feeling better than you did.

I'm unsure what the specialist has told you, but I do know that electrolyte levels can be disrupted, but not usually as a direct result of your TL surgery. This can occur if your thyroid was removed, a disruption to the parathyroid glands or if you had a reconstructive flap. It usually boils down to dodgy hormone levels and they can cause seizures.

Before my fella had his TL, he was severely malnourished as he hadn't been able to take solid food or water for months and had to rely on nutritional supplements and IV drips. His cortisol level was awry but he was prescribed Lanzoprosole for acid reflux, which he never suffered from, and the med caused a series of pretty frightening seizures after sending the cortisol into overdrive.

I spoke with his oncologist and he endorsed my decision to taper him off the Lanzoprosole as the seizures had ceased.

BUT, your situation is probably entirely different so you must carry on doing as your doctors advise. I've only told you about my OH's predicament as it could be worth your while, and your wife's if you're unable to speak, to bring up the subject of hormone levels as they're very important for keeping your body stable. Things can always be done to get these pesky blighters back on track and do their job properly, if they were involved with your seizure.

Sending you the best of luck with your recovery and hugs to you both xxx

Thanks Gill H for your reply hope all going well at your end I was.on pantopzole they took me off .I now have to go see endocrinology to sort it out also got ectopic heart problems so great all come at once 

Ah Scamp, I sympathise as yes, a host of other symptoms tend to crop up to keep the TL company.

A few months ago my OH also had to see the endocrinologist, to check hormone levels and also for any sign of diabetes. It took a while, and a phonecall from myself, but we eventually got a letter telling us that there was nothing immediate to be concerned about, apart from borderline raised bilirubin, a pigment that gives bile its yellow colour. He recently spent five days in hospital for a bladder blockage that caused a total loss of his body strength (that's improving now) and when his prostate was mentioned I insisted on a PSA test. This took three hospital letters and several phone calls from myself before the GP capitulated and arranged the test. He's useless.

To top all this and other issues, his ENT team found a lump in his neck. After a scan, and an anxious wait, we were told the lump is an oedema, a result of his regular lymphoedema flare ups. Apart from the above, everything is fine and dandy at our end.

I'm certainly not trying to depress you further Scamp, just trying to inject some frivolity into  situations that some doctors might try to dismiss if we didn't give them a proverbial kick up the a*** from time to time.

I'm really sorry to hear about your heart problem and sincerely hope it can be sorted out soon. But never be fobbed off if you've got concerns and if you ever want a chat about anything pertaining to your TL, there are others here and myself, always ready to help.

Sending strength and more hugs as I understand what you're both dealing with. All the best my friend xxx

Hi Gill. Your husband is so lucky to have you as his advocate. Beside himself you are the person that knows his condition and issues the most and can best articulate these on his behalf as it must be quite difficult for him to do it with his TL. I am glad to hear that he is doing quite well now. It sounds as though he has had a tough ride. It can be equally as hard for the partner but you sound like you are a tower of strength for him. 

Sending him and you my very best wishes for his ongoing recovery.

Best wishes to you too Scamp and I hope things get sorted out satisfactorily soon for you. 

Lyn

Aw thank you Lyn, for your kind words. But I'm one of those annoying sods who refuses to take things at face value, particularly from our GP, and always do the research. It's paid off quite a few times, thankfully.

It is difficult, with hubby being unable to speak for himself, but my gob's big enough for the both of us and I'm not afraid to use it. 

He's doing ok right now thanks, and I hope you are too my lovely, as I know about the many challenges you've faced. I hope Scamp takes heart from all the success stories on the forum. Big hugs xxx

Thanks Gill. I am doing fine. Have got used to my new normal now and living life to the max. Had a lovely holiday to Canberra our capital city with my husband recently. Holidaying is always a bit of a challenge because of my eating issue but it is good for my problem solving skills. I go with self catering and that works well.

Sending hugs back to you

Lyn

x

I’ve had a tl for five years things I’ve learned is never take any notice of your gp only your ent consultant has any experience in what you are going through I found diet is very important more so if you’re had stomach pull-up  good luck ps buy tissues in bulk 

Hi MarneyMoo and many thanks for your advice.

I don't take a blind bit of notice where our GP's concerned as on the very few occasions we've seen him, it became abundantly clear he's totally out of his depth with a lary. We've got a very good relationship with hubby's ENT team thankfully. He's doing really well with his eating now, back to his normal weight and can eat anything with all taste buds back to factory settings. We're well aware of the tissue situation and always have a good supply in stock, never leaving home without them and spare HMEs. The days of throwing on a coat and heading wherever are long gone.

Thank you for your good wishes and the same back to you my friend. Take care xxx

Hi Lyn.

Aw I'm so glad you had a lovely holiday, and thoroughly deserved too. It's good that self catering works for you, plus you can eat when you want and not be tied to set times. When we used to get away self catering was a must, but only because I'm such a fussy devil and tend to pick and pike.

It's really cold here now but luckily something that shouldn't touch you. Take good care my lovely xxx