Posted By: EzJim My latest Drs opinion - 08-17-2010 08:19 PM
Well, the ENT wants me to go to either the Cleveland Clinic or UPMC in Pittsburgh for them to check out my jaw on both sides where the bone is dead and it is spreading. He thinks they, with new procedures, might be able to take just the dead bone out and rebuild that part of my jaw on both sides. He noticed my weight loss and mentioned a feeding tube but as usual with 1/3 of my stomache being wrapped around my Esophagus, I would need to have my stomache opened up and redo things in there for the tube. Damn, life is so much fun at times. LOL I will let him make the appointment with Cleveland or UPMC about going for just the dead bone replacement, but might hesitate on the tube surgery. I guess we learn to walk one step at a time before we can run. I also had a message about the Anneurysm catScan and talked to the Drs nurse and she is setting up the Scan so the Dr knows just what is going on there. I often wonder what it would be like to have the everyday type of surgery. LOL If there is such a thing.
Posted By: Nancy T Re: My latest Drs opinion - 08-17-2010 08:28 PM
Hey Jim! Haven't been on here in awhile so am catching up. I don't think there's such a thing as "everyday type" of surgery anymore. However, I think it's wonderful that they are coming out with newer and better procedures so I'm hopeful that the one your ENT is thinking of works out great for you. As always, I love the sense of humor you always maintain - it's contagious!!! One of your angels must be a comedian. Hang in there and take care.

Nancy T
Posted By: Nancy T Re: My latest Drs opinion - 08-17-2010 08:28 PM
Hey Jim! Haven't been on here in awhile so am catching up. I don't think there's such a thing as "everyday type" of surgery anymore. However, I think it's wonderful that they are coming out with newer and better procedures so I'm hopeful that the one your ENT is thinking of works out great for you. As always, I love the sense of humor you always maintain - it's contagious!!! One of your angels must be a comedian. Hang in there and take care.

Nancy T
Posted By: EzJim Re: My latest Drs opinion - 08-17-2010 10:51 PM
Nancy, I see a Birthday Cake by your name and must say Happy Birthday to you. I won't ask how many for fear of you injuring me. LOL Thanks for the boost and I agree that at least one of my angels has a happy Halo to guide me.
Posted By: SusanW Re: My latest Drs opinion - 08-18-2010 02:13 AM
Jim, I have a feeling wherever you choose to go for your next step(and one step at a time sounds good...) your doctors and nurses will absolutely be charmed by you. Your posts really do get a smile out of me,no matter my mood. Keep us posted on what you will be doing next and when...
Posted By: ChristineB Re: My latest Drs opinion - 08-18-2010 02:50 AM
Jim, this is a difficult operation to go thru. Unfortunately if you have the jaw surgery, you will have to have the feeding tube and maybe a trach too. You would not be able to eat for some time with this type of operation. Hope the docs are able to pull off some kind of miracle to avoid all this surgery. Wishing you all the best!!!!
Posted By: EricS Re: My latest Drs opinion - 08-18-2010 03:04 AM
Jesus Jim...you are the toughest guy I know my friend. You keep getting dealt a shitty hand and your attitude never misses a beat.

Hang in there buddy!

Eric
Posted By: AnitaFrances Re: My latest Drs opinion - 08-18-2010 03:19 AM
Hi, Jim,

Your news is encouraging...that the ENT believes there is a solution for you is great! I sure hope that this gives you the relief you want. I wish you the best as you move forward.

Anita
Posted By: Charm2017 Re: My latest Drs opinion - 08-18-2010 01:32 PM
Jim

If anyone can pull this off, it will be you. I can understand your concern about stomach surgery over and above regular PEG placement. Is getting a combination J tube and G tube (as I believe Christine has) an alternative possibility. I just have the plain old "G" tube which goes directly into my stomach - it just not a PEG because it's not inserted with an endoscope (the E in PEG). A J tube though goes to the small intestine . They are both feeding tubes. Christine would know the ins and outs of a J tube about which I am clueless except for knowing it's name and destination [ from jejunostomy or into the intestine (jejunum = part of the intestine]. Can't hurt to ask your doctor
Charm
Posted By: airkitty Re: My latest Drs opinion - 08-18-2010 02:36 PM
Jim,
Sorry to hear about the bone necros. I think the Pittsburgh hospital is the one doing the ECM experiments. Extra Cellular Matrix. I saw this on 60 minutes. It appears that new tissue can be grown around an artificial structure to replace and replicate the original tissue. They profiled a nice man with a new esophagus. He was all smiles. I'm not sure if bone is possible with this stuff but it might be worth asking the ENT about. Good luck to you on this journey.
Posted By: EzJim Re: My latest Drs opinion - 08-19-2010 02:06 AM
If I go to Pittsburgh, It will be the closer one and I have been a patient there quite a few times over the years. I have a lot of faith in their Drs and the Staff.Cleveland is no boubt one of the worlds better hospitals, but Pittsburgh with 3 well known Hospitals rank right up there too. I think either would be a win win situation for me. If the procedure works for me or if I am a Candidate for it. Thanks all. Charm, in order for them to put a tube in, my stomache has to be relocated to it's old home. That was the holdup for the tube since my 1st surgery over yrs ago. But I like the way you came up with that and will ask.
Posted By: EzJim Re: My latest Drs opinion - 08-19-2010 02:09 AM
I forgot to add to the post that my Dr went thru my nose qwith his scope and told me there are no signs of Cancer and that my mouth and throat are just a mess from the rads , implants and chemo. He still likes my outlook tho.
Posted By: Marlene41 Re: My latest Drs opinion - 08-19-2010 03:28 AM
Jim -
I hope your doctors can help you with the jaw. I'd tell you to hang in there, but if anyone can teach ME to do that, it's YOU!
But thumbs up for the no-evidence-of-cancer!
Thinking of you -
Marlene
Posted By: ChristineB Re: My latest Drs opinion - 08-19-2010 12:14 PM
Jim, I never thought about the difference between a Peg and the J/G tube I have. The J/G tube is 2 tubes in one. The smaller tube goes into my intestine right after the stomach. The other tube is very small and goes into my stomach. I use the J side which is signifantly larger and easier for me. Since I bypass my stomach for feedings, I face no nasuea or cramping. Also another huge bonus is that with my tube came a bag. It connects to the stomach part of my tube. When I feel nasueous, I hook up the bag and it takes out all the bile from my stomach and I instantly feel better. I could use the G side for doing my feedings too if I wanted.

The J/G tube would be something to ask your doc about. Not many people have these. I only got this type due to complications of the PEG tube being dislodged and it was attached to my abdominal wall. The pain was severe as was the pain of the operation to change the peg tube for the J/G tube. I was awake for the procedure and felt the whole operation. They were afraid to knock me out cuz of my jaw surgery and a breathing tube. Boy have I come a long long way in a year!

Hope this info helps you Jim. Speak up and get this taken care of so you are not in pain anymore. We have talked about this for a couple years....way too long!!!!! Nobody should go thru hurting for a day, let alone years. Please take care of yourself.
Posted By: EmilyE Re: My latest Drs opinion - 08-20-2010 12:40 AM
jim..you have been through a lot! you sound so stubborn though (mean that in the nicest way possible)
do you have a wife/significant other or children to push you along to get the stomach taken care of?
it sounds like it will be a huge pain the butt but it also sounds like its something you HAVE to do. think of how much better youll feel in the long run

take care
Posted By: Nancy T Re: My latest Drs opinion - 08-24-2010 07:30 PM
Hey there, Jim, thanks so much for the birthday wishes - smart man not to ask questions - LOL!!! Very glad to hear your the scope showed no cancer - wonderful news. Christine's explanation of her J/G tubes sounds like it works pretty good. Definitely worth checking into. And she's right... you shouldn't have to be in pain all the time. Take care and keep us posted...inquiring minds want to know :-)

Nancy T.
Posted By: EzJim Re: My latest Drs opinion - 08-24-2010 08:20 PM
I agree that Christine tube sounds great, I have had 13/3 of my stomache wrapped arounf my Esophagus in 1996 for severe gastric problems tha would turn to cancer and still I have the Barretts Esophagus. This is the Drs holdup not mine. No I have no wife but have 3 kids in the area within 5 mile either way. They want whatever me and the Drs want. I will ask the Dr about the tube Christine has as soon as I see him. Right no9w we are doing the CtScan tomorrow to see if my half repaired aortic anneurysm is safe for surgery to finish it without it killing me.It is an abdominal aortic anneurysm and this will be the 3rd surgery on it. I will piost whatever I find out after the scan. Thanks for the con=cerns. LOL I I guesss I am a hardhead as I was brought up to be self sufficient . It seems if I can't do for myself, things just don't get done.
Posted By: EzJim Re: My latest Drs opinion - 08-24-2010 08:21 PM
Geez, I should have reread what I tryped. LOL that is 1/3 not 13/3.. DUH sorry
Posted By: ChristineB Re: My latest Drs opinion - 08-24-2010 10:52 PM
We knew what you meant. We love ya Jim and it wouldnt be the same without the typos smile

Hope you are finally going to get this taken care of. My peg is really called a J-G tube. Its not usually what they put in but I got it due to having a huge problem last year with the PEg tube becoming dislodged and attached itself to the wall of my abdomin. When are you seeing the doc next?
Posted By: EzJim Re: My latest Drs opinion - 08-25-2010 04:44 PM
I have ther name written down Christine abd for sure ask questiond about it and find out if I can get it inserted. I need to get nourishment without so much pain. Thanks Gorgeous lady.
Posted By: Nancy T Re: My latest Drs opinion - 08-27-2010 06:06 PM
Sorry, Jim - don't mean to stray from your post here but I have just got to compliment Christine here. Christine, I've been on here long enough to know a good deal of what you have been through and yet you are always there to root on and support and comfort everyone else. You are amazing. Hope you're taking good care of yourself as well!!! Jim, she's steering you on the right track - hang in there.

Nancy T
Posted By: EzJim Re: My latest Drs opinion - 08-27-2010 09:25 PM
I always listern to Christine. She always has good advice and keeps me straight when I stray a little. I plan on asking about being a maybe candidtae for that tube she has and am hoping. I also bought the Neutrogena Gel that Charm told me about. Either my head is hard or empty. LOL could be a mixture tho.
Posted By: julieann Re: My latest Drs opinion - 08-27-2010 09:47 PM
Hi Jim:

With moving, unpacking, and all I haven't been on the forum for a while and was surprised to see the problems you're having. I just want you to know that I'm thinking of you and praying for the best. I have faith in you overcoming just about anything you're dealt, so that's something positive. You are "the man." wink

Hugs from julieann
Posted By: EzJim Re: My latest Drs opinion - 08-27-2010 11:00 PM
Geez Julie, that hug came just as I was needing one. I just wish this pain would stop long enough to enjoy one mouthful so I didn't have to force the food in and down, that is after I smash it a few times and have water or a drink to wash it down. Maybw it time to switch decks and get new cards, LOL
Posted By: EzJim Re: My latest Drs opinion - 09-03-2010 02:31 PM
I haven't heard from the Dr concerning this anneurysm, But I do know he will get Drs from other hospitals for their opinion and what should be done. Whatever it will be I am not ready for but will smile and say, " Do what ya gotta do Dr". Just wake me in time to go home. This home I mean as I don't want to be on the outside looking in.
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