Posted , 5 users are following.
I have always been told my disease is mild and nothing need be done but since I saw another endocrinologist I am being directed down the surgery route .Parathyroid level 11 and calcium high end of range. I also have osteoporosis having had vertebral crush fracture 3 years ago. Can anyone advise me about having surgery at my age 75 ? I have had all scans and have right side adenoma.
0 likes, 12 replies
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robyn55925 patricia11863
Posted
Hi. I am 64 and in fairly good health in terms of going under general anesthesia. I am glad I had the surgery. My blood calcium was causing kidney problems and osteoporosis, so it really was a no-brainer for me. The only thing that "hurt" during the surgery was getting the IV setup and the anesthesia going into my arm. But that was just a few seconds. Two adenomas were removed, my blood calcium went down. The next round of tests is in November. I had a sore throat for a few days after. If you are well enough for the anesthesia, I'd say go for it! The osteo can be treated with calcium/D supplements. getting the blood calcium down is best for your kidneys and heart.
patricia11863 robyn55925
Posted
Thank you for your prompt reply. Glad your surgery went well but have read so much about surgeons not doing enough of these ops to become skilled and also not inspecting al four glands so that people need revision surgery at a later date. My surgeon is a General Surgeon specialising in breast surgery. As I live alone with no one to ask for help, I feel I can't travel down to London or Oxford to see the surgeons specialising in this type of surgery
robyn55925 patricia11863
Posted
rosemary25383 patricia11863
Posted
Hi Patricia
Until recently the NHS in the UK recommended surgery only for people under 50 !! When you consider that the majority of people who get this disease are postmenopausal women and therefore a lot of them are older than 50 (as was I), this was a bit of a nonsense! The lady called Sallie Powell who is on the Facebook site that Elaine talks about on here, she campaigned to get the NICE guidelines changed and now they say if you are under 70 you should have surgery! Obviously your new Endo thought you should have surgery which is good. I don't know where you are located in the world but if you look at my reply to Judi a short while ago, you will see I mention a specialist centre in Tampa that does only parathyroid surgery, about 3,600 surgeries a year (real experts). If you have primary hyperparathyroidism, you need to have the adenoma removed otherwise the calcium will just keep being leached from your bones and it always eventually leads to osteoporosis.
Unlike most other places in the world, the centre in Tampa does the operation under a local anaesthetic (and you are completely asleep, I can vouch for that). It is normally done in less than 20 minutes so you have a lot less risk from the anaesthesia or voice nerve damage.
The oldest patient the Tampa surgeons have operated on was 105 - yes 105 ! proving that you are never too old to have surgery! (as long as it's done by an expert surgeon).
Contrary to what most doctors say, there is no such thing as 'mild primary hyperparathyroidism' - as long as the adenoma(s) is there, it will keep on causing damage throughout the body. The Tampa surgeons say the damage is measured by the clock, how long your calcium has been high, and not how high the calcium goes - some people never have very high calcium levels but the calcium continues to be leached from your bones and the ONLY cure is surgery.
There is nothing you can do to improve your bones while you still have an adenoma.
Be careful about the scan - the Tampa surgeons say the scans are wrong more often than they are right, they can be very difficult to interpret. If I were in your shoes I would contact Tampa and arrange to send them your results and see what they say. Have a look at their website (if you can), we are not allowed to post websites on the forum but there is only one centre in Tampa and it is situated in a whole wing on the 6th floor of Tampa General Hospital.
I wish you well and keep us posted how you get on but don't waste any more time, your bones will not improve unless the adenoma is removed - and remember, you are never too old! (not in Tampa anyway)!
Let us know how you get on. BTW how long has your calcium been high?
Kindest regards.
Rosemary
patricia11863 rosemary25383
Posted
Calcium high for many years but not above top of normal range. Had osteoporosis for 25 years treated with biphosphonates. Live in Yorkshire England so Tampa is out of the question though I've read about it.
TR000 patricia11863
Posted
Hi Patricia,
If you can travel to the US to get this surgery done, it will be the best money and time you've ever spent. I traveled to Tampa from California to the Norman Parathyroid Center. It was a wonderful experience. They made a tiny incision in my neck and it was over in 15 minutes. They have done over 20,000 surgeries (8 to 10 a day). They're by far the best and most experienced in this area. People travel all over the world to get their surgery done at this facility. It was a stretch for us, but so worth it.
rosemary25383 TR000
Posted
Hi TR000 - I so agree with you,
The NPC is the best place in the world for this specialised surgery. It was a 9-10 hour flight for me from the UK but it was really worth it. My adenoma (the size of an olive) did not show on the scans and I was told the surgeon here would not operate if it did not show on the scan. It turned out to be ectopic and buried in my thymus gland deep under my collar bone (20% are ectopic). I was so ill by the time I had my tumour out - bottom line is you cannot get better until it's removed, you will just get worse. A general surgeon is not an expert in this type of operation. The tumour will eventually kill you if it's not removed and by then you will feel a lot worse.
The whole process at NPC is so professional and much less stressful than anywhere else and with just a local anaesthetic so no after effects from that. And what a view of Tampa Bay when you wake up!
You will continue to feel better over time, as I did. Good luck to you.
Kind regards.
Rosemary
TR000 patricia11863
Posted
Have the surgery! It wil lengthen your life and you'll feel amazing afterwards. I just had my surgery two weeks ago at the Norman Parathyroid Center in Tampa, FL. (I live in California). It was well worth the trip. I'm 61 and was almost dead from being so sick. I felt better almost immediately. I can't believe how much better I'm doing! You mentioned that you had the scan, but they don't always give you the whole picture, as sometimes you have
more than one adenoma and it doesn't show up. At the Norman Center,
they do the Sestamibiscan right before surgery, and they biopsy all glands
during surgery. They are the only place in the US that checks all four glands in the operating room. If you have more than one tumor, and it's not caught, you won't be cured. They do 8 to 10 of these a day and that's why I chose that center. Good luck. During the consultation they went over my medical history to determine if I was a good candidate. The surgery is only 12 to 15 minutes long at the Norman Center and you're not under a general, only light sedation. It was a great experience! Good luck.
judi81959 patricia11863
Posted
i am almost 64, just had the surgery 11 days ago. getting my stitches out this coming thursday. i would never do it again. i am in pretty good health so i was surprised when i couldn't wake up in the recovery room- i was there 12 hours, i had high calcium 9 years but now people tell me 5-6 weeks recovery. i hope thats true and that i do recover. right now i am getting headaches and have no energy. i had pretty good energy before and never got headaches- dr. told me i would be in twilight like getting a colonospopy but it wasn't- it was general anesthesia
robyn55925 judi81959
Posted
Wow, it sounds like you had a bad reaction to the anesthesia. I was told during the first consult with the surgeon that it would be general anesthesia. But I took the risk because I'd already lost 1/2 my kidney tissue to an illness years ago and I didn't want to lose any more. I was only in recovery room for a couple hours but felt pretty good and was released. I experienced fluctuating fatigue for a few weeks but generally felt better, sleeping better, improved memory. I was told that full recovery (the settling of my blood work) could take up to 6 months. I've always had insomnia, so fatigure that I might have now is different than what it was before surgery. Now I can "catch up" with my sleep whereas before I couldn't. I am taking vitamins plus on a calcium/D supplement regimen. I'm supposed to walk every day but I can't seem to make the time - I'm too busy. I hope you get this sorted out.
patricia11863 judi81959
Posted
judi81959 patricia11863
Posted
Cooper Hospital in South Jersey- the nurses were great, very friendly and helpful- they took good care of me- i don't know what happened with the anesthesia. Took me 2 days after to fully wake up. I am seeing my surgeon on thursday, can't wait to talk to her-