Please send good thoughts for my son’s surgery FINAL UPDATE
Jul 20, 2022 14:15:45 GMT
elaine, Zee, and 39 more like this
Post by Lexica on Jul 20, 2022 14:15:45 GMT
My son is having surgery at Mayo in Minnesota this morning. He went to Mayo to have the surgery by a specific surgeon, a man well-known for this particular type of procedure. His doctor in Idaho did his residency at Mayo and said due to the extra complications from my son’s scar tissue from previous cancer surgeries in the same area, this surgeon is the only one he would trust to do it.
His fiancé is sending updates so I will know what is going on as she is being updated by staff there.
Update:
I am going to put updates here for anyone interested.
10:00 - The surgery has begun. They anticipate it taking about 4 hours. The reason for the length of the procedure is because they have to do multiple blood tests throughout the surgery to test for his calcium levels.
1:30 and they are closing him up!
2:30. Final update. He is out of recovery and at the pharmacy picking up meds and will spend tonight at the hotel and head home in the morning. He said he already feels sharper mentally. Even with just coming off anesthesia! I asked him how long he thought the overactive parathyroid had been going on. He said the surgeon came into recovery to talk to him and mentioned that his parathyroid was the size of an egg! Just during the surgery his PTH level dropped from 300 down to 40 within 20 minutes of the parathyroid being out of his body. So this must have been happening for years and years. He is so excited to get his mind back. He said it feels like a fog has lifted.
You know, I mentioned to my mom several times over the years that my son was a different person after his cancer. She thought that it was just because he was entering puberty and that he was becoming more of a typical teenager. I’m now wondering if the changes that I saw were due to this overactive parathyroid. Because his personality definitely changed. He became so forgetful that it was frustrating! I so hope that part goes away now.
Some details on the procedure, again, if anyone is interested.
The surgery is a parathyroidectomy. It is a minimally invasive procedure but very technical due to the location of the parathyroid glands in the body. My son’s is going to be more difficult due to the number of surgeries he has had throughout his entire neck region and the previous cancer creating a great deal of scar tissue.
People typically have 4 parathyroid glands. They produce parathyroid hormone, PTH, which controls the calcium and phosphorus levels in our blood which is critical for nerve and muscle function as well as bone and teeth health.
In my son’s case, we don’t know whether or not they accidentally removed or injured any of the parathyroid glands during his multiple surgeries. The parathyroid gland is the size of a piece of rice and is fed by a single artery and vein the size of a human hair so injury to one is possible when removing things in the vicinity. We know he has at least one parathyroid gland because it is producing way too much PTH creating a host of symptoms in my son. That is the one they will be removing today.
But, your quality of life would be extremely affected if you had no parathyroid glands at all and had to rely on replacement medication. The parathyroid gland works constantly monitoring your blood levels and releasing the hormone as necessary throughout the day. Without even a piece of one and having to rely on taking medication, you can experience a whole list of issues such as muscle pain and spasms in your hands and feet, face, and large muscles throughout your body caused by heightened neuromuscular activity from hypocalcemia, paresthesia which is that pins and needle feeling, brain fog, fatigue, etc.
And this is with taking medication. The parathyroid is very tiny but performs such a big job in the body!
My son’s thyroid gland was removed in one of his surgeries years ago and he takes a replacement for that. Thyroid replacement therapy is quite common and very successfully achieved by taking a pill every day. Many people do this. I myself take a thyroid medication because my levels were low.
Even though the names are similar and they live in the same neighborhood, the neck region, the thyroid gland and the parathyroid glands are completely different animals providing completely different things to the body. Thyroid replacement medication works very well. Parathyroid replacement medication is very complicated and a person deals with a lot of side effects.
Because we don’t know whether my son has any of his other parathyroid glands intact and operational, the surgeon has decided to work as if we know for sure the one he is removing is his only one. The plan is to remove it all and then take a very small piece of the parathyroid tissue and place that into his chest wall where it can remain for life and hopefully do it’s job from there. You can live quite normally with just a small piece of a single parathyroid gland monitoring your blood and regulating it accurately.
After the surgery is completed, my son will require close monitoring to check his blood levels. If he still has any living parathyroid glands in his neck, which is the hope, the removal of this overactive one should reactivate them into functioning normally again. If that happens, we will know that he has at least one more functioning gland and they will go back in and remove the piece they placed in his chest.
(I’m not really clear on this part. This was said over the group texting instead of a phone call so I wasn’t able to ask a lot of questions about the timing and necessity of removing the little piece.)
When my son was telling me what the surgical plan was and that the quality of life would be very poor if he was to have no functioning parathyroid gland in his body at all, it made me feel frustrated and helpless. I wondered whether they can transplant one from another person as they do with large organs.
I did a quick search and Dr. Google says a family member can successfully provide a healthy parathyroid gland to a relative. Just knowing that this is an option should a) he have no functioning parathyroid gland that will now reactivate once the overproducing gland is removed or b) the small piece placed into his chest doesn’t do all it is supposed to do, I could hopefully give him one of my parathyroid glands. Just knowing this is a possible option helps me tremendously.
I also learned that the hyperparathyroidism that brought him to need today’s surgery was most likely caused by the radiation he received as a child. They are now seeing more patients that had cancer and received radiation in the neck area developing hyperparathyroidism which requires removal of the overactive gland.
If you read all of this, you receive an “A” for today’s class. Seriously, I am an information junkie and researching this helps me to relax. It is the unknown that terrifies me.
His fiancé is sending updates so I will know what is going on as she is being updated by staff there.
Update:
I am going to put updates here for anyone interested.
10:00 - The surgery has begun. They anticipate it taking about 4 hours. The reason for the length of the procedure is because they have to do multiple blood tests throughout the surgery to test for his calcium levels.
1:30 and they are closing him up!
2:30. Final update. He is out of recovery and at the pharmacy picking up meds and will spend tonight at the hotel and head home in the morning. He said he already feels sharper mentally. Even with just coming off anesthesia! I asked him how long he thought the overactive parathyroid had been going on. He said the surgeon came into recovery to talk to him and mentioned that his parathyroid was the size of an egg! Just during the surgery his PTH level dropped from 300 down to 40 within 20 minutes of the parathyroid being out of his body. So this must have been happening for years and years. He is so excited to get his mind back. He said it feels like a fog has lifted.
You know, I mentioned to my mom several times over the years that my son was a different person after his cancer. She thought that it was just because he was entering puberty and that he was becoming more of a typical teenager. I’m now wondering if the changes that I saw were due to this overactive parathyroid. Because his personality definitely changed. He became so forgetful that it was frustrating! I so hope that part goes away now.
Some details on the procedure, again, if anyone is interested.
The surgery is a parathyroidectomy. It is a minimally invasive procedure but very technical due to the location of the parathyroid glands in the body. My son’s is going to be more difficult due to the number of surgeries he has had throughout his entire neck region and the previous cancer creating a great deal of scar tissue.
People typically have 4 parathyroid glands. They produce parathyroid hormone, PTH, which controls the calcium and phosphorus levels in our blood which is critical for nerve and muscle function as well as bone and teeth health.
In my son’s case, we don’t know whether or not they accidentally removed or injured any of the parathyroid glands during his multiple surgeries. The parathyroid gland is the size of a piece of rice and is fed by a single artery and vein the size of a human hair so injury to one is possible when removing things in the vicinity. We know he has at least one parathyroid gland because it is producing way too much PTH creating a host of symptoms in my son. That is the one they will be removing today.
But, your quality of life would be extremely affected if you had no parathyroid glands at all and had to rely on replacement medication. The parathyroid gland works constantly monitoring your blood levels and releasing the hormone as necessary throughout the day. Without even a piece of one and having to rely on taking medication, you can experience a whole list of issues such as muscle pain and spasms in your hands and feet, face, and large muscles throughout your body caused by heightened neuromuscular activity from hypocalcemia, paresthesia which is that pins and needle feeling, brain fog, fatigue, etc.
And this is with taking medication. The parathyroid is very tiny but performs such a big job in the body!
My son’s thyroid gland was removed in one of his surgeries years ago and he takes a replacement for that. Thyroid replacement therapy is quite common and very successfully achieved by taking a pill every day. Many people do this. I myself take a thyroid medication because my levels were low.
Even though the names are similar and they live in the same neighborhood, the neck region, the thyroid gland and the parathyroid glands are completely different animals providing completely different things to the body. Thyroid replacement medication works very well. Parathyroid replacement medication is very complicated and a person deals with a lot of side effects.
Because we don’t know whether my son has any of his other parathyroid glands intact and operational, the surgeon has decided to work as if we know for sure the one he is removing is his only one. The plan is to remove it all and then take a very small piece of the parathyroid tissue and place that into his chest wall where it can remain for life and hopefully do it’s job from there. You can live quite normally with just a small piece of a single parathyroid gland monitoring your blood and regulating it accurately.
After the surgery is completed, my son will require close monitoring to check his blood levels. If he still has any living parathyroid glands in his neck, which is the hope, the removal of this overactive one should reactivate them into functioning normally again. If that happens, we will know that he has at least one more functioning gland and they will go back in and remove the piece they placed in his chest.
(I’m not really clear on this part. This was said over the group texting instead of a phone call so I wasn’t able to ask a lot of questions about the timing and necessity of removing the little piece.)
When my son was telling me what the surgical plan was and that the quality of life would be very poor if he was to have no functioning parathyroid gland in his body at all, it made me feel frustrated and helpless. I wondered whether they can transplant one from another person as they do with large organs.
I did a quick search and Dr. Google says a family member can successfully provide a healthy parathyroid gland to a relative. Just knowing that this is an option should a) he have no functioning parathyroid gland that will now reactivate once the overproducing gland is removed or b) the small piece placed into his chest doesn’t do all it is supposed to do, I could hopefully give him one of my parathyroid glands. Just knowing this is a possible option helps me tremendously.
I also learned that the hyperparathyroidism that brought him to need today’s surgery was most likely caused by the radiation he received as a child. They are now seeing more patients that had cancer and received radiation in the neck area developing hyperparathyroidism which requires removal of the overactive gland.
If you read all of this, you receive an “A” for today’s class. Seriously, I am an information junkie and researching this helps me to relax. It is the unknown that terrifies me.
