vdub
11-27-2010, 07:40 PM
This is how it started with me about 18 months ago.
May 2008 – Absolutely dead tired all spring and summer. Sleeping whenever possible – maybe as much as 16 hrs/day. Totally wiped out.....
Aug 2008 -- Grudgingly saw doctor and thyroid readings lower than should be. Referred to ENT. ENT does an ultra sound and my left thyroid is 3 times larger than normal, so they do a full body MRI looking for anything that might smack of cancer. They find 3 suspicious lymph nodes. Thyroid is to deep to biopsy so they just leave it alone.
Oct 2008 – Surgery #1 -- Lymph nodes removed and were tested as benign, but no other testing done (I wonder if they had granuloma lesions?). The surgeon however, said they looked “really weird”.
Generally felt pretty good during the winter of 08/09.
Spring 2009 – Psoriasis developed on my hands. Should have been another red flag I suppose, but instead I get my first introduction to Prednisone and discover what has to be the best legal drug you can get your hands on.
Aug 2009 – Surgery #2 -- Tired again and no energy. By just an off chance, they test my testosterone level (apparently not done often). Way low, so they start me on testosterone injections. Seems to help a little bit. Also, at the same time, I’m snoring more, so they do a sleep lab. The conclusion is that I have a deviated septum, so they do a rhinoplasty (hurt like hell). This surgery was suppossed to help my sinus issue. I think the ENT just likes to do surgeries. They also put me on a CPAP.
Nov 2009 – We are out RV’ing and on the east coast in FL. I come up with a slight cough and constantly running nose. I chaulk it up to hayfever. We fly home from Atlanta to the Pacific Northwest for xmas and I still have the “hayfever”. Just before flying back to Atlanta, I call my local doc and he gives me 10 days of antibiotics, thinking it was a sinus infection.
Feb 2010 – We’re at Memphis NAS, so I go to see the Navy docs. Same thing – sinus infection, handful of antibiotics.
Mar 2010 – We’re at New Braunfels, TX for a month. At the beginning of the month I see yet another doc – sinus infection, handful of a different antibiotic. At the end of the month, I go back to him. Still had the running nose, but also now had a severe headache whenever I coughed. He gave me a steroid shot in the butt. Ah, the steroid shot – felt great, so headed to Whitesands Missile Range in NM.
Mar 2010 – Steroid shot I had received in TX wore off after about a week and the headaches came back only worse. I put up with them for a while and then they just became unbearable, so I went to the Army docs at Whitesands. The Army docs looked at me for about a half hour, then put me in an ambulance and sent me over the hill to the LasCruces hospital. At this point, I was going in and out of consciousness. I only remember that the ambulance ride was one the roughest damn rides I’ve ever been on. I also remember being at the hospital for about 10 minutes – wife claims it was closer to 12 hrs. I also remember that morphine is really good **** – maybe as good as prednisone. Soooo, they did a CT scan at Las Cruces, told me I had a polyp in my sinus, gave me a handful of prednisone and tell me to make an appointment with my ENT and head home. I was flying pretty high on the prednisone, so got back home in record time.
Apr 2010 – Surgery #3 -- My local ENT sees me and says there is no polyp and, besides, a polyp wouldn’t cause headaches. I’m still on the prednisone, so no problems. Once I run out of the prednisone, however, the headaches come back, so I make an appointment with my local doc. He’s very good and a little more than curious, so orders an MRI on Monday, 19Apr10. Ah Ha! The MRI shows it’s not a polyp, but it’s a stink’n brain tumor or maybe a pituitary tumor (they can’t tell).
Wednesday, 21Apr10 at 1600, surgery to remove the "tumor". Four hour surgery. Stayed in ICU for 8 days and another 2 days in the regular ward. My life changed dramatically once the pit was destroyed!
Apr 2010 - The neurosurgeon sends the “tumor” to the mayo clinic and they come back and say it is a granuloma and Wegener's Granulomatosis should be considered as the type disease I have.
May 2010 - They put together a team of docs with a neurosurgeon, neurologist, rheumatologist, ENT, endocrinologist, and my local doc. I start giving up gallons of blood for testing. It's also difficult to make appointments with docs because they are interfering with other appointments with docs. After a bunch of tests, they conclude its Wegener’s Granulomatosis with Pituitary Involvement and start treating me accordingly.
Jun 2010 -- Mt Sinai Research Hospital in Toronto, Canada requests DNA samples for study.
Nov 2010 -- Surgery #4 -- Sinuses are overflowing. ENT decides to do an endoscopy, basically scrape out the sinuses (3/8" Craftsman drill?). Yeah, this is the same guy that just likes the knife. Not sure if the issue is rhinitis or the WG. Given other symptoms, it's probably WG, which means the surgery will probably do very little in relieving the situation.
End of Nov 2010 -- Earlier suspecions that surgery #4 was a waste of money has come to pass. The nose is still running and the headaches are still there even when on pain meds. Another MRI is scheduled for just a couple days from now. I'm hoping they won't find anything. On the otherhand, I'm hoping they do find something so that there's is a chance of correcting it. Most likely another brain surgery is in my future. I'm certain glad we have good looking nurses around here as I seem to be destined to spending a lot time with them.
I am PanHypoPit, which is fancy doc talk for the pituitary has totally checked out. Since the pituitary controls most all of the endocrine system, all sorts of stuff is messed up. So far, my testacies, adrenal, thyroid, hypothalmus, and pituitary glands have all checked out and gone south. I’m on about 5 or 6 different hormone drugs, plus several “treatment” drugs.
The drugs I'm on have so many side effects that I feel "not normal" most all the time. Some drugs are taken to counter the adverse side effects of others. Lots and lots of drugs. The worst part? I’m just always bloody tired and have no energy…. Oh well…. Could be worse... In fact, there are many, many people worse off than me.... I count my blessings for having things as well as I do............
Sooooo, does this pretty much describe "as good as it gets"? Will I ever feel normal or should I stop whining, accepted things as they are make the most of it?
May 2008 – Absolutely dead tired all spring and summer. Sleeping whenever possible – maybe as much as 16 hrs/day. Totally wiped out.....
Aug 2008 -- Grudgingly saw doctor and thyroid readings lower than should be. Referred to ENT. ENT does an ultra sound and my left thyroid is 3 times larger than normal, so they do a full body MRI looking for anything that might smack of cancer. They find 3 suspicious lymph nodes. Thyroid is to deep to biopsy so they just leave it alone.
Oct 2008 – Surgery #1 -- Lymph nodes removed and were tested as benign, but no other testing done (I wonder if they had granuloma lesions?). The surgeon however, said they looked “really weird”.
Generally felt pretty good during the winter of 08/09.
Spring 2009 – Psoriasis developed on my hands. Should have been another red flag I suppose, but instead I get my first introduction to Prednisone and discover what has to be the best legal drug you can get your hands on.
Aug 2009 – Surgery #2 -- Tired again and no energy. By just an off chance, they test my testosterone level (apparently not done often). Way low, so they start me on testosterone injections. Seems to help a little bit. Also, at the same time, I’m snoring more, so they do a sleep lab. The conclusion is that I have a deviated septum, so they do a rhinoplasty (hurt like hell). This surgery was suppossed to help my sinus issue. I think the ENT just likes to do surgeries. They also put me on a CPAP.
Nov 2009 – We are out RV’ing and on the east coast in FL. I come up with a slight cough and constantly running nose. I chaulk it up to hayfever. We fly home from Atlanta to the Pacific Northwest for xmas and I still have the “hayfever”. Just before flying back to Atlanta, I call my local doc and he gives me 10 days of antibiotics, thinking it was a sinus infection.
Feb 2010 – We’re at Memphis NAS, so I go to see the Navy docs. Same thing – sinus infection, handful of antibiotics.
Mar 2010 – We’re at New Braunfels, TX for a month. At the beginning of the month I see yet another doc – sinus infection, handful of a different antibiotic. At the end of the month, I go back to him. Still had the running nose, but also now had a severe headache whenever I coughed. He gave me a steroid shot in the butt. Ah, the steroid shot – felt great, so headed to Whitesands Missile Range in NM.
Mar 2010 – Steroid shot I had received in TX wore off after about a week and the headaches came back only worse. I put up with them for a while and then they just became unbearable, so I went to the Army docs at Whitesands. The Army docs looked at me for about a half hour, then put me in an ambulance and sent me over the hill to the LasCruces hospital. At this point, I was going in and out of consciousness. I only remember that the ambulance ride was one the roughest damn rides I’ve ever been on. I also remember being at the hospital for about 10 minutes – wife claims it was closer to 12 hrs. I also remember that morphine is really good **** – maybe as good as prednisone. Soooo, they did a CT scan at Las Cruces, told me I had a polyp in my sinus, gave me a handful of prednisone and tell me to make an appointment with my ENT and head home. I was flying pretty high on the prednisone, so got back home in record time.
Apr 2010 – Surgery #3 -- My local ENT sees me and says there is no polyp and, besides, a polyp wouldn’t cause headaches. I’m still on the prednisone, so no problems. Once I run out of the prednisone, however, the headaches come back, so I make an appointment with my local doc. He’s very good and a little more than curious, so orders an MRI on Monday, 19Apr10. Ah Ha! The MRI shows it’s not a polyp, but it’s a stink’n brain tumor or maybe a pituitary tumor (they can’t tell).
Wednesday, 21Apr10 at 1600, surgery to remove the "tumor". Four hour surgery. Stayed in ICU for 8 days and another 2 days in the regular ward. My life changed dramatically once the pit was destroyed!
Apr 2010 - The neurosurgeon sends the “tumor” to the mayo clinic and they come back and say it is a granuloma and Wegener's Granulomatosis should be considered as the type disease I have.
May 2010 - They put together a team of docs with a neurosurgeon, neurologist, rheumatologist, ENT, endocrinologist, and my local doc. I start giving up gallons of blood for testing. It's also difficult to make appointments with docs because they are interfering with other appointments with docs. After a bunch of tests, they conclude its Wegener’s Granulomatosis with Pituitary Involvement and start treating me accordingly.
Jun 2010 -- Mt Sinai Research Hospital in Toronto, Canada requests DNA samples for study.
Nov 2010 -- Surgery #4 -- Sinuses are overflowing. ENT decides to do an endoscopy, basically scrape out the sinuses (3/8" Craftsman drill?). Yeah, this is the same guy that just likes the knife. Not sure if the issue is rhinitis or the WG. Given other symptoms, it's probably WG, which means the surgery will probably do very little in relieving the situation.
End of Nov 2010 -- Earlier suspecions that surgery #4 was a waste of money has come to pass. The nose is still running and the headaches are still there even when on pain meds. Another MRI is scheduled for just a couple days from now. I'm hoping they won't find anything. On the otherhand, I'm hoping they do find something so that there's is a chance of correcting it. Most likely another brain surgery is in my future. I'm certain glad we have good looking nurses around here as I seem to be destined to spending a lot time with them.
I am PanHypoPit, which is fancy doc talk for the pituitary has totally checked out. Since the pituitary controls most all of the endocrine system, all sorts of stuff is messed up. So far, my testacies, adrenal, thyroid, hypothalmus, and pituitary glands have all checked out and gone south. I’m on about 5 or 6 different hormone drugs, plus several “treatment” drugs.
The drugs I'm on have so many side effects that I feel "not normal" most all the time. Some drugs are taken to counter the adverse side effects of others. Lots and lots of drugs. The worst part? I’m just always bloody tired and have no energy…. Oh well…. Could be worse... In fact, there are many, many people worse off than me.... I count my blessings for having things as well as I do............
Sooooo, does this pretty much describe "as good as it gets"? Will I ever feel normal or should I stop whining, accepted things as they are make the most of it?