RE: Lidias Surgery Next Friday..

[Guest guest]

Hi , how did u find it at only 5 months old. What was it that u saw.? I do believe Beth Israel is a good place to be. My son is 13 years and just had the operation last week he is now recovering. We went to Boston Childrens hosiptal, Dr Proctor is his dr. The operation went well. Did u ask your dr. if it can REtether if u find it at such a eairly age? Please let me know. Janice.

[Guest guest]

hi , don't worry about getting your meals and stuff, i found with my 13 yr. old, the first days he would sleep alot, thats when i would sneak down to get a meal or something, you can take it right up to your room.,plus the nurses will help, just let them know when u are leaving. I found u must keep close watch on some, not all nurses. Always watch the IV bag, if it empities let them know. Keep close watch on what medications they are giving Lidias.Don't be afraid to tell the nurses what u want. Mothers know best. It must be somewhat different for a baby, but these are the things i found to watch for. do not let any pain meds wear off, unless the dr seems to think u can. One nite i fell asleep at the time my sons meds were due and the nurse forgot to give them to him. He woke up in awful pain, i had to run for the nurse. This all is not as bad as it sounds, just be aware of everything. Your mom and husband will be angels to you since it is very nice to have help. My mom , sister and husband spent most of the time with me. It gave me a chance to get good sleep, since i found it hard to sleep with my son like that.

Tell me more of this new technology computer? do all the major hospitals have this, like Boston childrens hospital ? I would like to know. Thank your Janice...

[Guest guest]

,

That is an excellent hospital and I've heard that Dr. Jallo is very

good. My sister's brother in law practices there - an ocologist.

Remember to take all Lidia's comfort things like blanket or stuffed toys.

--

Life is change ... Growth is optional ...

Choose wisely.

Kaiser

[Guest guest]

Thank you Lynda, this helps me. They told me I can stay over with her, and stuff.. but I'll have to go to the caferteria for meals..I'm afraid to leave her, any ideas?

My mom and husband will be coming for 4 days, but the rest of the time I'll be on my own..

Anyone tell me what to expect? The doctor told me that he will remove about 90% or more of the fat deposit on her spinal cord.. He said most docs can't get that much, but hes got a new technology computer that can see the nerves so he won't hit them.. Kinda scarey!!

and Lidia

-----Original Message-----From: V Sent: Saturday, January 12, 2002 8:20 AMTo: tetheredspinalcord Subject: Re: Lidias Surgery Next Friday..,That is an excellent hospital and I've heard that Dr. Jallo is very good. My sister's brother in law practices there - an ocologist.Remember to take all Lidia's comfort things like blanket or stuffed toys.-- Life is change ... Growth is optional ...Choose wisely. Kaiser

[Guest guest]

HI , my son is doing fine recovering, he can walk little right now, but is getting stronger, and i dont see any problems with walking, he will start thearpy soon. My son doesn t have the dimple or anything, so it took longer to find.

I do think everything will go just fine for you and the baby. Did your dr. say anything about it REtethering? And just because it is something i was thinking, probably a silly thing, did anyone or a dr tell you how this could happen, could it be position in the uterus, or genes, Did u have a c-section, i did and am courious if c-section would have anything to do with a tsc. Just all question that i think of i would like to ask the Dr. at my sons next visit. If u heard anything let me know. Janice...........

[Guest guest]

Janice,

I will find out the name of the computer for you.. Actually I will email the doctor and ask him.. I think he said he's the only one with it in New York.. so I don't know about Boston.. I'll find out the name, and you can ask your doc, if you want?! It's new, I think..

Thanks for all the information.. No mom wants to see their kids in pain.. I'm really worried if they aren't going to medicate her enough.. Did you feel sick to your stomach for weeks before the surgery?? I'm so numb knowing that she's got to go through this.. Yes she won't remember it, but it's so hard!!!!

-----Original Message-----From: addpg10@... Sent: Saturday, January 12, 2002 12:57 PMTo: tetheredspinalcord Subject: Re: Lidias Surgery Next Friday..hi , don't worry about getting your meals and stuff, i found with my 13 yr. old, the first days he would sleep alot, thats when i would sneak down to get a meal or something, you can take it right up to your room.,plus the nurses will help, just let them know when u are leaving. I found u must keep close watch on some, not all nurses. Always watch the IV bag, if it empities let them know. Keep close watch on what medications they are giving Lidias.Don't be afraid to tell the nurses what u want. Mothers know best. It must be somewhat different for a baby, but these are the things i found to watch for. do not let any pain meds wear off, unless the dr seems to think u can. One nite i fell asleep at the time my sons meds were due and the nurse forgot to give them to him. He woke up in awful pain, i had to run for the nurse. This all is not as bad as it sounds, just be aware of everything. Your mom and husband will be angels to you since it is very nice to have help. My mom , sister and husband spent most of the time with me. It gave me a chance to get good sleep, since i found it hard to sleep with my son like that. Tell me more of this new technology computer? do all the major hospitals have this, like Boston childrens hospital ? I would like to know. Thank your Janice...

[Guest guest]

Hello! Lidia was born with 2 hemangiomas on her butt.. One was in a "Dimple" above her butt crack (thought this was normal, cause I have this dimple.. ) the other is around her anal opening.. they bleed everytime she gets her diaper changed.. They aren't painful.. but they are a pain.. I asked to have them checked out by a derm.. I was afraid one had a hole in it, and the dermatologist agreed with me that we should check to see if there was a hole and he sent me for an MRI.. The day she had the MRI I found out she had a Tethered Spinal Cord.. She was 4 months when we found out.. It took me time to get a good doctor with the holidays and all.. Dr. Epstein was our first choice, but as you probablly know he was in a bad accident and was in a coma.. So we went with one of his associates.. I hope all goes well..

How is your son doing with recovery? Is he walking yet??

-----Original Message-----From: addpg10@... Sent: Saturday, January 12, 2002 12:23 PMTo: tetheredspinalcord Subject: Re: Lidias Surgery Next Friday..Hi , how did u find it at only 5 months old. What was it that u saw.? I do believe Beth Israel is a good place to be. My son is 13 years and just had the operation last week he is now recovering. We went to Boston Childrens hosiptal, Dr Proctor is his dr. The operation went well. Did u ask your dr. if it can REtether if u find it at such a eairly age? Please let me know. Janice.

[Guest guest]

Thank you so much .. I hope I made the right choice!

-----Original Message-----From: V Sent: Saturday, January 12, 2002 8:20 AMTo: tetheredspinalcord Subject: Re: Lidias Surgery Next Friday..,That is an excellent hospital and I've heard that Dr. Jallo is very good. My sister's brother in law practices there - an ocologist.Remember to take all Lidia's comfort things like blanket or stuffed toys.-- Life is change ... Growth is optional ...Choose wisely. Kaiser

[Guest guest]

I guess there are not any real definite answers as to why it happens, but i do , do alot of thinking.

About it REtethering, my Dr. really seemed to think my son would not retether, but he didnt sound sure of himself when he answered me. I have not ever heard of anyone not retetering, i am sure some do not, but who ever i talk to does. I have to ask my dr. again or at least what his thoughts are on it. Every other dr. says they can retether. They do say it is hard to pick up on the MRI, or that some MRI s show that it always looks retetherd even if it is not. So the symptoms are what to look for.

I still think it is funny you had a c-section, too. How did u feel about the section, and do u have other childern? I have just the one boy. Be happy......Janice........

[Guest guest]

Janice,

I did have a c-section, but as tethered as she is, it had to have been tethered in the womb.. Wait, DEFINATELY, cause she has these signatures (dimple and Hemangioma) at birth.. so it wasn't the c-section. I have come to believe that it just get's stuck. I don't know if it's the fact that her spine isn't completely formed?! I'm sure that doesn't help much. He did say it is probable to retether. They will "try" and watch it by MRI's every 6 months, but it's sometiems hard to see after the surgery, and that we will probably be going by symptoms. He did 3 tethering surgeries in December 2 were re-tethers, and 1 was the first found..

JenNY

-----Original Message-----From: addpg10@... Sent: Saturday, January 12, 2002 9:52 PMTo: tetheredspinalcord Subject: Re: Lidias Surgery Next Friday..HI , my son is doing fine recovering, he can walk little right now, but is getting stronger, and i dont see any problems with walking, he will start thearpy soon. My son doesn t have the dimple or anything, so it took longer to find. I do think everything will go just fine for you and the baby. Did your dr. say anything about it REtethering? And just because it is something i was thinking, probably a silly thing, did anyone or a dr tell you how this could happen, could it be position in the uterus, or genes, Did u have a c-section, i did and am courious if c-section would have anything to do with a tsc. Just all question that i think of i would like to ask the Dr. at my sons next visit. If u heard anything let me know. Janice...........