I Hate Dialysis Message Board
Off-Topic => Other Severe Medical Conditions => Topic started by: brenda on April 14, 2007, 08:01:15 AM
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So I went to the surgeon yesterday to find out about having my 5th parathyroid removed. I had four of them removed in nov but the 5th was hiding somewhere. I had a nuclear imaging and an MRI done a month ago. First of all , my nep was so excited because they had located it, which apparently doesn't happen very often, but that is was just located behind and on the left of my collar bone. No big deal, right? easy to remove. Well not the case, his eye could not tell how deep it was. It is apparently very deep. So not so simple. The only way to get at it is open my entire breast bone. This to me, being my gut feeling or whatever, is not an option. The recovery time is very long and it entails exposing the heart. My gut feeling tells me I wouldn't fair very well in the end. Had I followed my gut feeling in the first place I would have never had the original surgery and would be living with a PTH of 1600 instead of 3200. The one remaining parathyroid has gone crazy. I though I was in pain at the time of surgery, if I could only go back to that level of pain, I'd be good to go. The new level of pain now is someday's just about more than I can bear.
So my only option now is the Sensipar which I started taking a few weeks ago. (not a long term solution) And to cut off the blood supply to the remaining parathyroid. (also not a long term solution, generally works for about 1 year until it finds a new blood supply). But I am willing to try that out.
But what do I do now, basically I know I am not going to get better. Do I just stop life? How do I keep working? It's such a challenge for me everyday. Thinking I was going to get better sooner or later is what has kept me going. The thought of having to deal with this pain long term, wow, I can't even. I can't see my self out fishing or camping or running around with Lauralie in a wheelchair. What happens to my quality of life now? What happens to my quantity of life now?
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That is what is so great about this website. You can ask peoples opinions straight from the hip. If you were to ask a healthy person the same questions your answers would not be from the heart and experiences. I for one can not answer the question because I have not lived through this and I have not experienced what you are going through, however I would stand behind you and support you no matter your choice. May God bless you and give you strength to make the proper choices.
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:cuddle; Brenda,
I am sending you warm hugs and prayers and I hope you hang in there.
This is very tough. Pain is so hard to handle long term.
I know you have probably explored all the options, but there's always hope.
I was reading about minimal invasive surgery http://parathyroid.com/mini-surgery.htm - but is it because of the location that this won't help?
One day at a time baby. Don't give up.
:cuddle;
K
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What a frustrating position you are in, Brenda! Can't say I know how you feel, but do know that we are all here for you and want to see you get pain relief. You have decisions to make and they won't be easy, but consider all outcomes. Do you want to see Lauralie go to school, sing in her first program, make you a Valentine card, bake cookies with you... Sometimes pain can make us shortsighted. More power to you for enduring! Take care and know I'm thinking of you! :cuddle;
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Brenda, Come on girlfriend, we have all been dealt a bad hand and all we can do is play it, you cant just quit and give up, i am sure you mean so much to so many people, i know you mean alot to me, afterall, if it werent for you, Xena wouldnt have the beautiful name that she has ;) No matter what you decide girlfriene, rest assured that we are here with you and for you. Take care my friend, my thoughts and prayers are with you always... :grouphug;
Susie
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:grouphug; Hang in there Brenda. One small step at a time. :grouphug;
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Hang in there girl, you can do it!
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:grouphug;
Is there anything they can do for the pain, even short term? Can you go see a pain treatment specialist? I know from first hand experience how hard it is to focus on anything when you have chronic pain. Even if it is only a short term solution, if they could ease the pain for a while, it might help you focus and make a decision that is best for you.
Hang in there, girl!
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Thankyou so much for all you kind words and thoughts, It really does mean a lot to me. For now I just need to get home tomorrow and be able to let my emotions go for a while. I can't do that up here around all my kids. I am the mom and that means I have to protect them as much as I can. I think I need a day or two off to really absorb all this, Thanks again. Brenda.
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Please remember that we are there for you. Our caring thoughts and prayers are with you as you face this challenge. As the others have said, don't give up!
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Aww Brenda.. :cuddle; Know that we are all hear for you. I can imagine how difficult things are but you will get through this hurdle. :cuddle;
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Brenda
Give the Sensapar a chance to work. I'm on it and doing well. I will not go for the parathyroid surgery. Why do you say that Sensapar is "a temporary solution"?
:cuddle;
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:grouphug; :grouphug; :grouphug;
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I'm so sorry you're in such a spot! Hang in there, because you have good things to look forward to, and we're all pulling for you! :grouphug;
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Hi Brenda,
I can sympathize with you over the Parathyroid issue. I have actually had 4 (yes, 4!) parathyroid surgeries. In each case the doctors removed 3 entire nodes and left only a partial of the 4th. The dang things kept growing back. In my last surgery in Nov 2003, an MRI showed that I had grown back all 4 glands again. Unbelievable! Anyway, this time the surgeon auto-transplanted the remaining “mini-gland” into my left forearm. Now if I have any trouble, it will only take a procedure under local anesthetic to remove or reduce the gland. That’s the good news. The bad news is that that particular surgery in Nov 03 caused the demise of my transplant (after almost 16 years). I was devastated. My transplant has been through a lot. It survived over 10 angioplasties, 3 parathyroid surgeries and even a triple bypass heart operation. I have my own opinion on why this surgery caused the failure but I’m sure the surgeon would have a differing opinion, of course.
What I’m here to tell you is that yes, having your breast bone cracked open isn’t fun but it isn’t the end of the world either. A good surgeon, nephrologist, cardiologist and of course strong family and friend support will make all the difference in the world. As far as the pain is concerned, everyone involved in my case were quick to ensure me that medication is always available for pain. You heal much faster with pain medication than without it since your body can concentrate on getting better as opposed to fighting pain all the time. I was exercising in a supervised cardiac rehabilitation program within 14 days of surgery and was back in driving in 6 weeks. Not too bad.
I’m currently taking both Sensipar and Hectorol in order to control my PTH levels and haven’t experienced any side effects from either drug.
Hang in there. We all go through trying times such as these but hopefully you’ll find a solution that works best for you.
Good luck.
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Let us know what you choose Brenda, and best of luck with it.
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So for now I'm going to stick with the sensipar, they have upped the dosage to 60mg a day instead of just 30. I'm not really feeling any better after almost 2 months of the 30mg. I will go for an MRI as soon as it's booked. From there, who knows, I just wish the sensipar would kick in even a little bit. This is a trail that I am on from the drug company and am the only one on it in this health region. I'll feel bad if this doesn't go well because I have heard so many of you being helped from sensipar. If this doesn't work for me I don't know if AHC will never approve it because they are tracking my progress as well. I wish the would try it on other's too, I am the extreme case. As far as why it's not a long term solution, I was told, my body will eventually build up a resistance to it. Like these superbugs we have floating around, and how they get resistant to treatment and become superbugs. But whatever, I'm going to take that chance. I can't see myself going back for surgery, not at this point anyway. And what the heck, summer is close, the weather is warm and that always makes me feel better.
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Hang in there my friend! :cuddle;
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Oh Brenda. I sure wish I could give you something to think about but I can't. All I can do is offer my
support and (virtual) shoulder. I hope you got to do your crying so you can now sit down and
start thinking about what to do. Grit your teeth, and hang on, whatever you decide, we are here
for you! :grouphug;
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Finally some good news! Last month my Pth was 204. Have just been hoping to see under 200, that was my goal. That's still not a great number but it's way better than over 300. Well today I got my blood work back, my Pth is 164!! Yahoo!! Yippeeee! Now if I could only see under 100. Keeping my fingers crossed. Started taking Sensipar in March, now on 120mg a day.
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:yahoo; That's what I want to hear! Yippee!! :yahoo;
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:clap; :clap; Great news Brenda. :bandance; :bandance;
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That is wonderful news!!!! :yahoo; :yahoo;
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Well allright Brenda, :bandance; Hope you reach all the goals you are striving for my friend :clap;
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:bandance; :yahoo;
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Sensipar dosage changed to 150mg today. PTH went way up again :banghead; They claim that doing lots of dialysis has nothing to do with your PTH levels. So how come mine went down so far after 4 weeks of nocturnal training (for 3 1/2) and a few days trying it at home. It's got me suspicious a little. Before I go loose it on the doctor :boxing; (who I can't get in to for 2 months) I am going to try a little experiment.
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What kind of experiment?
I hope you figure this out Brenda. :cuddle;
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Sensipar dosage changed to 150mg today. PTH went way up again :banghead; They claim that doing lots of dialysis has nothing to do with your PTH levels. So how come mine went down so far after 4 weeks of nocturnal training (for 3 1/2) and a few days trying it at home. It's got me suspicious a little. Before I go loose it on the doctor :boxing; (who I can't get in to for 2 months) I am going to try a little experiment.
brenda thats BS i have increased from 6.5 hours to 7 to help lower my pth and its working you are right i have been told longer dialysis does help :ausflag;
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Well that's my theory Charee, that will be my little experiment while I'm waiting to get into the Dr. With the help of my home-hemo trainer I will try dialyzing 4-5 nights a week for a few weeks and see what happens to my PTH. Not nocturnal cause I just can't deal with that but I figure I may as well do something, and what a better time than when it's -30c outside and snowing. I'll try it in January. :snowman;
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its worth trying keep us posted on how it goes :2thumbsup;