I'm so excited!!!!!

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tecjb	I'm so excited!!!!!		Lead	[-]
Posts: 1674 08/06/08 22:17 Insomniac USA	Tags : None and I just can't hide it.... (sorry... I'm getting carried away). I've just got to let you guys know. It's been a LOOOOOONG couple of years with Jonathan. With all of his surgeries, the "BIG" one last August and then going from doctor to doctor, and hospital to hospital in all of New York City and hitting wall after wall after wall... I was . However, right here on Staten Island a neurosurgeon was willing to do the surgery- put in a shunt (even though not in the right part of the brain) and then re-did it 2 days later... however.... (DRUMROLL PLEASE....) he's now.... HEADACHE FREE!!!!!!! I was telling DH tonight that I was starting to think I had that syndrome that some parents have where they want to keep their kids sick. Every doctor told me that I was wrong- it wasn't a pressure issue and that a shunt wasn't going to help him. He's lived on 2 years of narcotics (which he's become dependant and addicted to- and actually now that we are reducing them is going through withdrawals)... and I was starting to think that maybe "I" was really the one and maybe "I" had a real problem. Even though it made logical medical sense to me- why couldn't anyone else (especially doctors) see it? I was REALLY starting to think maybe "I" had a BIG problem. However... I wasn't ... I was just right... and I'm not even a brain surgeon! I'm just so thankful that I didn't listen to all the doctors that kept telling me that my son would have to "live with his pain" and kept pursuing someone to help. To all of you who are on the quest for your kids medical conditions... keep persevering .... it's a hard battle but go with your gut and don't give up! Thanks for your , thoughts and well-wishes for him. You guys have listened to me report such horrible things about his condition for so long I thought it time to give some great news!
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Mairzii		#1	[url]	[-]
Posts: 685 08/06/08 23:37 USA	Oh, what wonderful news!! You both must be thrilled!
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Ravenstardust		#2	[url]	[-]
Posts: 2103 08/07/08 01:25 Watcher USA	I'm so happy for you Thank the God's for your great news .
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izzie053		#3	[url]	[-]
Posts: 18 08/07/08 06:54	Hi Tecjb, I'm new to this group. I saw your post about your son, I'm so happy for you and your son. I will keep you and your son in my prayers. God bles. Izzie
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havheg		#4	[url]	[-]
Posts: 4615 08/07/08 08:45 Moderator Norway	Brilliant news! I'm so happy for Jonathan!
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tecjb		#5	[url]	[-]
Posts: 1674 08/07/08 09:40 Insomniac USA	Thanks guys. Hi Izzy- nice to meet you- I'm Leslie from NYC. Thanks for your , they are appreciated. It's been a frustrating (to say the least) situation with my son (and I have a younger son with the same illness- but had to get the older one better before I can start on the younger- I'm running low on energy and now just need to be able to breathe). Anyway... thanks for the thoughts.
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shadeaux63		#6	[url]	[-]
Posts: 2778 08/07/08 09:41 USA	How absolutely WONDERFUL! I know how glad you AND Jonathan must be. You know, if it was me, I would have to gloat- I would be calling ALL of those docs who said all that rot to you, to tell them" Guess, what? Jonathan is headache-free now, because we found a doctor who actually KNEW what he was doing." But, that's just my evil, vindictive side shining through,LOL.I hope now, that all of this is behind him, and he can start being a normal teenager(although, that might drive you nuts, too). Blessings to both of you- and the doc who did the right thing- finally.
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tecjb		#7	[url]	[-]
Posts: 1674 08/07/08 10:01 Insomniac USA	Sherry- I've ALREADY emailed our neurosurgeon from Columbia (the one we were with up until last year after the big brain surgery) AND our neurologist (who I wrote last week and she said she couldn't believe that they were even willing to do the surgery)... yes to gloat (I've got quite an evil and vindictive side myself)... although the ones I BLAME the most are the 2 - the jerks at Cornell and the guy up in the Bronx. I never actually saw a neurosurgeon at Cornell- just the moron croanies and neurologists... but the n'surgeon who "guaranteed" me that it wasn't a pressure issue and a shunt would NEVER help... I'm calling his nurse practitioner. Listen.... I'm not saying that if I was a surgeon that I'd be "jumping at the chance" to go into some kids brain who had so many past surgeries and his brain taken apart, shaved down skull and put back together... HOWEVER... it was common sense- if the symptoms went away by going into the spinal space and draining some fluid... then.... drain some! just makes me so angry that so many people just dismissed him (and me). All they kept telling me was "you just need to get him off the narcotics, those are the problem". What idiots. Oh well... I'll do my gloating and thrill in the fact that he's not got a headache for now... which for both of us (moreso for him- but still) is SUCH a relief! Normal teenager... - gee thanks for the reminder!
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InAlabama		#8	[url]	[-]
Posts: 3740 08/07/08 14:03 Kudzu USA
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Noela2		#9	[url]	[-]
Posts: 74 08/07/08 15:24 Spain	Leslie, I am so happy for your son (and for you and your family!) I'm glad you perservered until something could be done! Jo
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BELL		#10	[url]	[-]
Posts: 2267 08/07/08 16:19 Surrehue Norway
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amberlover13		#11	[url]	[-]
Posts: 20365 08/07/08 18:00 Moderator USA	Wonderful news Leslie, just wonderful. You've been through so much with jonathan.....I am extremely happy for all of you!
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trtl48		#12	[url]	[-]
Posts: 1032 08/07/08 21:55 Steph Italy	all is "wrong" with you is, you are used to living in a crisis situation--you feel a bit wobbly in a freer space my second son, too, found a n-surgeon right here in Florence, by pure chance, after we had searched the world over yaaay!
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Allis61		#13	[url]	[-]
Administrator Posts: 7071 08/07/08 23:53 Alice Norway	I'm so happy for both Jonathan and you, Leslie. Finally!!
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granny ja		#14	[url]	[-]
Posts: 5504 08/08/08 00:24 Queen of Tea USA	doing the happy and thankful for some relief for Jonathan. Thank God too, I've continued praying for his relief. Now, you can breathe a bit easier. my thoughts and prayers continue.
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shadeaux63		#15	[url]	[-]
Posts: 2778 08/08/08 04:31 USA	You're VERY welcome for the reminder, Leslie-HAHAHA. And I'm glad you gloated a bit- maybe next time a parent comes in with a kid that needs herlp, they'll think about it, abd try to do the right thing, instead of handing out useless advice.I really wish a day would come where doctors actually believe what thier patients are telling them.Those of us with chronic pain, and kids with chronic pain problems don't get listened to at all, it seems.Maybe someday,right? But anyway, you guys are still in my thoughts.
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Sunshine56		#16	[url]	[-]
Posts: 42310 08/08/08 09:09 Mosken ezOP Board Owner Norway	This is great news, Leslie!I'm so happy for all of you!
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tecjb		#17	[url]	[-]
Posts: 1674 08/08/08 10:27 Insomniac USA	Thanks guys. Yes, Sherry... that's my hope and reason for a little of my gloating- but I think I'm going to put that in more of a "formal" letter- one that explains that. I'm not sure my "gloating" will give anything useful except maybe my own "satisfaction"! Ha. I do need to sit down and write a letter to these doctors who were so dogmatic about our situation- although I've gotta get some sleep before I do it- or else it will be snotty, and I don't want to show attitude... just the facts man! You guys can keep him in your thoughts- I've got a challenging task of getting him off of narcotics- over 2 years on the max adult dosages of every narcotic out there- poor kid. Of course, you'd think if he survived these years with all the brain pressure he could survive withdrawing from drugs... but it's pretty rugged. It's sad to watch him go through it- however... I'm hoping that it will be short (a few weeks) and that he will be off by September- at least that's my .
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Mairzii		#18	[url]	[-]
Posts: 685 08/08/08 17:20 USA	I hope that with your diligent supervision, his withdrawals from his medication won't be too rough. crosses fingers to you both!
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tecjb		#19	[url]	[-]
Posts: 1674 08/08/08 22:30 Insomniac USA	Thanks Mairzii- he actually looked the best he has all week today. However... when I asked him about his headaches- he said "well, I had a little one today- nothing big- and it didn't last long- just a little". So I said something like "well, it's nothing that you can't live with is it?" and he said "no, it's nothing... YET.... however... if the shunt is starting to clog... then it will get worse and more painful!" My stomach sank ... and I didn't know if he's just nervous... OR... if he "feels" different already. Whatever... I guess we will be thankful for the days he has and time he has without a headache... however long or however many days it may be.
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Sunshine56		#20	[url]	[-]
Posts: 42310 08/09/08 12:54 Mosken ezOP Board Owner Norway	What do you do to help him not to worry? I find that so difficult myself.
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