Possible Carcinoid tumor?

Hi. I have a dual chamber Medtronic pacemaker now for 3yrs due to Bradycardia and arrhythmia. Symptoms of bulging neck veins and a feeling of chocking especially when leaning forward, or training my upperbody...and upperbody arm movements. I go red in my face and feels asif i am standing on my head.. They are suspecting s Carcinoid tumor and causing carcinoid heart disease. Anyone have similar symptoms?? Zm awaiting results!! 
would love to hear from anyone!! 
Thanks, Natasha


7 Comments

Carcinoid Tumour

by Selwyn - 2020-03-25 08:41:19

Wishing you well. You certainly need further investigations.  Medics have fertile imaginations! Carcinoid is a rare illness.

I expect superior vena cava syndrome is a possibility given your symptom description above. 

Let's hope they don't keep you waiting long. The waiting is the worst as the imagination can work overtime when the reality is much more down to earth when it is known.   Carcinoid syndrome should be a simple blood/urine test.  Do let us know how you are doing.

Best wishes for some good health. 

Possible Carcinoid tumor.

by Pacing1 - 2020-04-05 16:20:45

@Selwyn

Thank you for your reply. I appreciate. My blood tests and urine test results were thankfully normal which I am so grateful for! However there was talk that I might need to go for a MRI of heart, however the challenge is my Pacemaker. Can I havevit done with my Pacemaker? Or will it interfere? I haven't yet spoken to my Cardiologist as we are on lockdown here in SA. So it is anyway  pointless now as i doubt we can't do it now. 
I can feel that I am needing to get it sorted out asap as I have alot of "what feels like palpitations..which probably is the pm kicking in" or I don't know. As i do have the Arrythmia still. 
Also as i mentioned before that my throat feels chocked up..bulging neck veins. So yes it is rather getting worse now. Also if I am laying down. 
So let's hope I can get it sorted out soon! 
Thank you again. 
Kind regards, Natasha
 

Possible Carcinoid tumor.

by lauren618 - 2020-04-06 09:03:06

I have a medtronic dual chamber pacemaker as well and i'm not sure when exactly you had yours implanted but I had mine implanted June 2018 and I can have MRI's done with the one I have. not sure if yours is a different model or if that would make any difference but i'm guessing you should be fine to get the MRI! they do however need to know about it, because i do think they have some sort of extra steps for pacemakers. I haven't had an MRI since I had the pacemaker implanted but it was a discussion for a bit and my cardiologist said I would be able to get one with mine. Not sure if this helps but i hope for all the best :-) 

Possible Carcinoid tumor

by Pacing1 - 2020-04-06 09:15:48

@lauren618

Hi thanks for your feedback! I appreciate it so much! Yes I too have the Medtronic dual chamber leads aswell. Had it put in Oct 2016. 
Will hear what my Cardiologist says etc. 
Look after yourself! Appreciated! 
 

Kind regards, Natasha
 

Re:dilated neck veins and feel like being choked.

by vines - 2020-05-27 22:46:55

Hi there, how are you now? Any updates from your doctor regarding your complains? Hope you are doing ok. 

Re:dilated neck veins and feel like being choked.

by Pacing1 - 2020-05-29 04:16:02

@vines

Thanks so much for asking. I spent ALOT of money on dr visits and scans with no answers! Then went to have a live blood analysis done and yes my my body had alot of inflammation aswell as my red blood cells were not looking healthy, which explains why my breathing got worse, and my White blood cells were not good too. Anyway am eating a very strict food plan, adjusting it as I improve, which has helped alot!! So those changes have seriously helped me alot!! 😊

Take good care!!

Re: dilated neck veins

by vines - 2020-06-10 03:16:35

Hi there @pacing.Actually i have same exact symptoms like you until now. I was admitted for 3 days, numerous blood works done, and venous scan both upper and lower extremities. The doctor said i have upper extremeties venous thrombosis. They put me on xarelto this time. But i still have those symptoms. But im hoping it will be ok sooner with this anticoagulant therapy.

Im glad your doing ok. Keep me posted. 

Glad i found this club who understand what we are feeling. 

Best regards:

Vines

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I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.