Osteoporosis, Me, and the Others

Through all the testing it seemed like an eternity but it was really only 2 Months. I have gotten to the bottom of this finally. Just yesterday I got the call from the doctor- I have a very deficient amount of HGH in my body and the extensive blood test over 3 hours was done last friday to determine this. So in beginning the end of my diagnosis and the start of my treatment We have found that the tumor on my pituitary gland has caused quite the disarray of my hormone systems along with all of these effects:
The tumor caused low testosterone and low HGH which in turn caused Full Blown Osteoporosis and all of my feel good, let's get up and conquer the world each day, hormones became depleted. So not only is it a complete struggle just to place my feet on the floor and get going each day, but I also deal with the fact that the bone degradation and the arthritis that is riddling my body make me feel like my bones are breaking with every step. L4 & L5 in my spine are crushed and in dire need of repair but they cannot repair it due to concerns that the steel will not stay in place because my bone density is so low. You want to talk about being stuck!! I have to take pain medicine on a daily basis along with wearing a pain patch or else I cannot walk and have a semi-normal day, let alone work and be productive. I also have all the classic signs from the tumor. My eyes have been crossing lately and I have been sick to my stomach for 5 days now with a splitting headache that the pain meds don't seem to touch. It is bad enough I can see my heartbeat in my vision(everytime my heart beats I see the pulse in my vision). This sucks but I cannot give up. I just wish someone would say "Were gonna do this to try and help." but instead I get " We have to watch this and see what's going to happen." I have had major issues now for two years, with my quality of life being pretty crappy. I mean were talking ER visits to the tune of about 60 times in two years, blood pressures of 203/132 then 208/136 consecutive on one occasion. 3 times I had to call the squad to pick me up cause I just didn't think I could handle the car ride and stay conscious. I am frustrated because I can do nothing here except be at the mercy of the DR's and I am miserable. Again it is the unknown enemies that hurt us the most.
Keep the Faith-
Krajr427

By nornd
Posted August 5, 2009 at 4:03 pm
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Hi Krajir427, I am sorry to hear of your distress. Have you sorted out a good bone plan? This is a good site for learning the 'ins and outs' of bone health and what is the best course of action. Do some research. Read up all you can. Sometimes a complete change of diet and lifestyle is needed, and will also help to address your arthritis problems too. There are many people on this site who will help and advise, including professionals. Good luck and let me know how you are. Cheers.

By theorchardhouse
Posted August 8, 2009 at 4:45 pm
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There are few things in life worse than dealing with constant pain. It is amazing how easily we succumb to accepting and dealing with sometimes almost unbearable pain as "normal and routine." I am so very sorry for what you and your family must be going through! I hope and pray that now that your physicians have gotten to the "bottom of things," you can begin to heal and begin a steady uphill path to reclaiming your health. Thank God for the internet! Take control and research your specific health issues. Armed with information, YOU tell your physician what treatment modes you are most comfortable with. Never give up! Good luck to you!

By Hawkeye7766
Posted August 21, 2009 at 1:35 pm
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I am sorry to hear about your problems, but I wonder if you have been told exactly what kind of tumor it is, and are they treating the tumor specifically? The reason I ask is that I have had a pituitary tumor, a very small one. My endocrinologist told me that it was a prolactinoma, caused by high levels of prolactin. I too had low testosterone and low thyroid function as well. My endocrinologist prescribed Dostinex (Cabergoline) for the prolactinoma and Levoxyl for the low thyroid levels. My prolactin levels have now fallen way down to normal levels and the prolactinoma is just about dissolved. Thyroid function is good too (these things are all connected). I hope this bit of information is helpful to you and I wish you good health.
All the best,
Hawkeye

By Krajr427
Posted August 22, 2009 at 10:18 am
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Hello All,
I have been reading all your posts and I thank all of you for your support and kindness and I hope all are blessed with good news and good feelings. Now for an update- I got some second opinions over the past two weeks and they were not good. First I saw another Endocronologist and was informed that the swing in the z-score that I and my bone doctor require for the next and most important pain relieving surgery to fix my back and relieve me of these pain meds so I can start to live without all that poison going into my system to keep the numbness going. I was told that the swing I need just hasn't been seen in all his years. Bummer:( The tumor is an inactive type not producing any of its own hormones telling us why we do not have excessive levels of some hormones in my system and thus the "inactive" label. All signs point to non-cancerous which is good but the brain surgeon said he was afraid of it and deemed it an inoperable tumor due to it's location(between the lobes of the pitituary). And also my carotod arteries are too close for some reason to the gland and tumor and the was a "high" risk of clipping one of those main arteries and then it would not be good. So my HGH levels are non-existant and I just as two days ago started Humatrope therapy- daily injections at home kinda suck, especially if you hate needles as I do. So more MRI's will come, because if it grows it will have to come out or risk the consequences(blindness) and such. I hope I did not leave anything out. God bless all of us and keep the faith:)
Krajr427

By betterbones
Posted August 26, 2009 at 4:23 pm
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Hi Krajir,
I am sending you positive energy - I believe you will beat this as we all will beat our health issues. This is temporary - you are still the person you were before; a physical therapist saw me after I'd heard from countless doctors that I'll never be the same... and he said "you are a tea cup with a chip and we're repairing the teacup - you're still the teacup." Take it from me - having recovered from a 75mph head on auto collision - having been bed ridden which helped form osteo, in my bones -- I am reversing the condition naturally (just my choice, yours might be different). But pain (I had miserable pain from multiple injuries including terrible headaches from concussion) is something I have found a way to relieve w/o meds. I recommend reading
EAT TO LIVE by Joel Fuhrman - even though it focuses on weight loss- it mentions treating many conditions like pain) with diet alone. Also - BETTER BONES BETTER BODY by Susan Brown - this is what I follow and I am feeling strong these days. Anyway - you can just google 'treating pain with diet' and read various studies. I wish you well -

By Krajr427
Posted September 13, 2009 at 6:46 pm
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Well- My neck fusion from 12-08 is a total bust and I have to have emergency surgery on the 23 of Sept. 09 to keep a low risk of paralysis. They called it a total failure of the previous fusion. Crapola!! I can only hope this helps some of my pain and discomfort as I am getting pretty weary and have some real pain issues attributed to the C7 failure which is why I am having surgery-AGAIN. Sorry for the shortness of this and my recent quietness but I have been on the worst end of things for quite some time now(three weeks).
Take care and I'll let you all know how things go on the 23rd.

Krajr427

By bestinsuranceagent
Posted September 22, 2009 at 8:17 am
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This has been interesting. My older sister is very obese and has always had massive spinal problems, even before she became so heavy. I still can't help but wonder if she weren't so heavy, would it not improve. Her whole life has centered around her health for 20+ years and she is only 64. I know her problems are real as she has had two back surgeries, one for spinal fusion which broke. Now her knees are starting to go and her husband is quite ill. She has osteoarthritis and many other issues. Things do not look good for the household. I plan to get the book someone mentioned Eat To Live, but she just does not have any incentive. I just know the weight is such a contributing factor as it is for so many people in our country, but if you have little else in your life, I guess food becomes your friend.

My vent.

By sdivas
Posted September 22, 2009 at 4:39 pm
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bestinsuranceagent, unless a person is ready to receive the message, the book will not be helpful. Is it possible that your sister is depressed? It would stand to reason with all of the stress.

By bestinsuranceagent
Posted September 22, 2009 at 5:47 pm
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Hey guys, I practice yoga and go to class twice a week. It has really strengthened my back and improved my situation, but have osteopenia, but it has progressed somewhat. Yoga is a wonderful exercise, and I sometimes fall asleep in the relaxation. My schedule is hectic.

By italiancowgirl
Posted September 23, 2009 at 2:49 am
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I have a daughter who was 19 and diagnosed with a pituitary tumor. Went to head of dept. at Mt. Sinai Hosp. in New York, Dr. Kalman Post. The most wonderfully incredible doctor I have ever worked with. He removed the tumor. She is in her 30's and perfectly fine. She was having terrible headaches, no loss of side vision, but white spots seemed to erase whatever she was looking at, randomly placed in her vision. The tumor was pressing on her optic chasim. Dr. did not know if she would lose sight or not. She did not! Two kinds of surgery, one with an ENT and Pituitary Surgeon, takes TOO long. Dr. Post did it himself, transphenudally (sp). Inside mouth above the top front teeth. No stitches show, no scar shows. That is the one to have. After surgery she had MRIs every 3 months, and then they got to once a year. Now I believe a few years in between. Then a speck showed up that was not on the origina MRI, it had to be zapped. A doctor of physics, and two other drs.slid her into a MRI like cylinder and she had pin point radiation. Hopefully, if this is done all of your problems will disappear. Her's did. I bless Dr. Post daily. Always available to sit and talk to you. Wishing you the best of luck.

By DBM
Posted September 24, 2009 at 3:51 pm
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Krajr427 - I shudder at the problems you describe. In my opinion, one gets nowhere dealing with all these symptoms. One must get to the root cause first. From your picture, you look young. the world is full of mediocre doctors who will lead you on a chase after one thing or another. If I see any case justified for drastic measures, you are one. I strongly urge you to go to a top medical center near your home. Consider one of the Mayo clinics, Cleveland Clinic, Univ of Penn, Johns Hopkins, U Mass and the like. this Mount Saini Dr. sounds just right too. If you are in the West there is Mayo in Arizona and may be others.
When you are fighting alligators, it is difficult to make time to drain the swamp.

By lilrayosun
Posted October 12, 2009 at 2:55 pm
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Millie123, I was just thinking the same thing. I stumbled across this post last night and noticed it was Krajr's last post.

I hope you are okay, Krajr! If you can't type, maybe have someone else let us know how you are.

Thinking of you and wishing you well,
lilray

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