Pete81241

wow susie youve been member for ten years...do you get engraved watch next month?

i was just a regular guy when i was 17 yrs old but my bones started growing quite wide. by age 19 i developed carpel tunnel syndrome in both hands. it was terrible at night with pain shooting up and down arms. i was on the college golf team and you can imagine how my scores skyrocketed.
80 lbs later and 23 yrs of age was diagnosed with pituitary tumor. in he next 8 yrs went throght 2 brain surgeries and a proton beam treatment but the growth hormone continued to be too high.
i managed to live my life fairly well as i was married and adopted two girls. i worked managing a graphics firm.
my back was a mess but i kept active and fought off my pain. i liked skiing , rollerblading and swimming.
the last 13 yrs have been rough because of constant pain, the worst of it was in my hips, arms, shoulders, head, neck, legs, pelvis, chest, upper back and lower back.
both hips replaced and 6 lumbar surgeries plus 4 level neck fusion later here i am in a power wheelchair and able to walk only 30 feet with aid of crutches....pal pete

hi rose[manyissues] looks like we found plenty of people like us in pain. i wish there were avitars however because i need to see your smiling face in the morning....guess we need skype.....pal pete

hi snowbunny...are you a skier or snowboarder or do you sit next to the fire like i do in the lodge....thank you for the welcome SB,

they harvested my hip bones for my surgeries. ...
i had a big neck surgery. for an acromegalic like me my neck grew to 22 in. in cercumferance. at first i didnt think the surgery worked for my pain but this year i was given a rhyzotomy and my pain has improved. exercise recently has really helped my neck improve...
but lumbar trouble and severe leg pain has not been helped. nor has any med broken the pain....my last hope is a pain pump...
there are a lot more meds around now for the pituitary gland. in 1964 when i was diagnosed there was only surgery or radiation.
my growth hormone would still be high now except for the good results i've received from the drug somavert.
so SB do you need any replacement hormones. since my pituitary was destroyed i need levothyroxin, prednisone and testosterone for me to function.
i see you have trouble with a bad knee. do you think the pituitary caused it?
rose and i became friends at another site. she is very supportive...pal pete

Post Edited (pete81241) : 1/24/2013 7:25:46 PM (GMT-7)

thanks neverthesame...

leah its you...i didnt click right away on your name...rose must have given you the name of the site. how was pain today...i think i know the answer. i had a tooth pulled today and it only tok 20 seconds. sure beats the 45 minute tooth 3 weeks ago....pal pete

Welcome back Pete.

Laura

Hi Pete...you asked a few questions so I will answer briefly as this is your thread:)

I love to ski but haven't been in a long time due to my surgeries:(

They used bone from my hip in my first fusion...but cadaver bone for the other two...So you don't have any titanium in your back/neck at all?

The medication that I took for a short period of time for the PT was Bromocriptine (I think that is the name.LOL..it's been a lot of years since then! They did this for about 3 months and then because I was losing my health insurance they wanted to do a brief round of radiation to try and blast it. I have not needed any hormone replacement meds...I think there are quite a few different version of PTs....And my knee issues are separate and due to lots of "fun" in my life from playing soccer, being in the Fire Dept., rock climbing...so they just have wear and tear (literaly...lol) Because I walk every day and do yoga/stretching...they have only tweaked a few times the last years.

And now it looks like there are 3 of you from the other site! We are glad that you all have found us!

I think I remember you, so very sorry about what they did to you pituatary, I got a dx of a pituatary tumor in 2005 mine is due to prolactin and my doctor put me on cabergoline and he will keep me on this medication, it has help but it's still there just not as big. It was 10 ( mm) and holding at 5 now.
Anyway I wanted to say hello.
If I might ask what caused your hip replacements? What lower back problems? I have moderate canal stenosis and disc buldges, and recently dx with RA. Keep us posted on your pain pump and when you get that.

It looks like Pete only had a few posts back in 2010 so it would be amazing if any of us actually remembered him, (no offense to how memorable you are as a person Pete..LOL)

Not to be confused with our other long time Floridian fisherman Pete whom we haven't seen in quite awhile...

It seems like Pete, Rose (manyissues), and Leah (crowinpain) all came from another board so that they all know each other...My first thought was thinking they were a Polygamy family of pain patients that have broken free and allowed to use the internet...(Pete and his ladies...LOL)....

Ok...in a squirrely mood today:)

We are definitely our own big "family" here who supports and cares for everyone who posts. No matter what health issues cause someone's pain, we can all empathize what it's like to live with it daily.

Ahh...Shell...glad you brought up chat...I forget that we have that here!!! I haven't been on there in ages!

is that a problem mrsm? have you discussed this with leah?

thanks so much for the greetings shell. mrsm. snowbunny, tmjpain, chartreax, laura and straydog.

isnt it amazing that 3 of us have pituitary trouble?
chartreax my hips took a beating most likely from the osteoarthritis that acromegaly caused. plus my bones and muscles became quite heavy so my skiing plus the extra weight really stressed my hips. i was however able to ski until age 60. i'm 71 now...
the extra bone growth created havoc in my spine. i developed ligamentum flavum, facet hypertrophy, spinal stenosis and neuroforaminal narrowing. one chiro looked at an xray and called it the worst back he ever saw..
the discorageing thig for me is that it keeps getting worse. i've been attacked in almost all my nerve roots. just about every square inch of my legs are in pain. even with crutches i cant stand more than a few minutes.
i had a scs implanted and it did nothing to help...i have had bad luck with two pump trials. the first one was cancelled because they neglected to tell me not to eat. the second was a problem because i had a few skin infections.
my bones are so thick the pm doc for my scs trial tried for two hours to get a lead in and couldnt get by the bones. when it got implanted they needed to do a hemi laminectomy. i got stimulation all through the legs but no pain relief.
my pain is very much affected by position so in order to survive i am constantly changing my position. my best position is to kneel. i kneel on a large power chair that reclines.
i spend a lot of time on another site as a helper and i came here because rose did and we like to chat a lot.
today was an especially bad one for me and it took me about 4 hours to get off the floor and prepare to go outside for some very fresh air.....thank you for listening.....pal pete

Post Edited (pete81241) : 1/25/2013 7:10:39 PM (GMT-7)

Hi Pete,
Yes, it is a bit of a problem, one that has been addressed with Leah in her time here previously. It is not allowed to have more than one member name here on this forum, at least to my knowledge, but I'm sure that will /can be addressed by the moderators and administration of this forum.
I do welcome you and Rose. I have read your other postings on another forum and know that you have struggled greatly with pain and I'm sure that others here and myself will gain alot from your perspective.
I'm sorry for all that you have gone through. I wish you both nothing but the best.
Sandi

Hi Pete,
Yeah, we all have been through our own struggles here. Mine is just a little different in that mine was caused by my first back surgery, which only worsened things. For now, I only hope that I make another day still standing on my own two feet..
My legs for the most part are like rubber, and they tend to get very weak if I try to stand too long or walk too far. In the morning, it takes a bit of time before they get moving, but I think the worst part for me anyway is having to wait to see how my legs are going to hold up. I think that you know how that feels, you go to take a step and aren't quite sure that you are going to be standing when you put pressure on your legs. I tend to stay near counters or things that I can grab onto easily, that way if my legs do give, I have something to grab onto. I have rods and screws at L4-5, but since my second surgery, the levels above and below are effected due to the bone growth protein they used...it apparently adhered my spinal covering to the back of the vertebre above and below as well as at L4-5 . Right now, the problems are from L2-S1.....
I take each day as it comes, it's all I can do and be thankful that I had another day on my feet.
My back pops all of the time but I am not sure if it is because of the spondylolysthesis of L3-4 ( 60% + slippage last time they did a CT scan) or if it just the result of the diameter of the spinal canal making it feel that way. The diameter is only 3.4 mm wide if I recall the dimension correctly. My hips play a part in it as well. My gait is called ataxic or something similar which basically means that I walk really funny. I also have a bilateral total drop foot so all of that plays a huge part in everything.
Sandi