PDA

View Full Version : MRI RESULTS



mom2cris
March 25th, 2004, 10:42 PM
Today we took Cristian for his results for the MRI and CT. The neurologists says :? well it appears to me that his inability to walk it do to his illness!! DUUUHHHH! That he has atrophy of the brain and that his blood ventricles were enlarged. He showed me the films and I was in shock to see his brain shrinking. We asked about the crying spells he has for 2 to 3 hrs. straight and that there is no way of knowing he is in pain. "I KNOW IT"!! I know the difference in his cries and he is crying because he is in pain!

Kim, I called Dr. Swift and I am waiting for his phone call. Thats for all your help.

We told the neurologist that we wanted a second opinion and he said that that is my right and that he recommended it. So to Dallas we will go, when Dr. Swift calls!!! I don't need to hear, well I think, or perhaps. I want to know everything and know that you know what you are talking about. My son getrs worse everyday and it is hard to see him go through this. I month ago he was running now he can't even sit up by himself. I have been as strong as I possibly can, but this is it. I will do what I have to to see that he gets the best care he possibley can and in order to do that is to look elsewhere. The waiting was just the pitts :frown:

Nilda and Cristian

momtoty
March 26th, 2004, 12:18 AM
Nilda,
It hurts me just to read your post, I am so sorry for what you are going through right now.
If his ventricles are enlarged- he has hydrocephalus! How do they explain the enlarged ventricles, if not from CSF fluid? I hope that Rosmarie and Amy will chime in here with their experiences- especially Chase's story. Something I was told is that CSF pressure in the subarachnoid spaces, can cause brain atrophy when the patient is over 2 or 3yrs and no longer has a soft spot and open sutures( once the skull fuses together there is no ability to expand so the pressure pushes inward to the brain instead of outward expanding the skull)- If Dr Swift does not call you by mid day tomorrow, call me- I will call Corky or Debra for you.
Dr Swift will know what he is talking about Nilda. I honestly feel he will be of great help to you and Christian. You might email Dr Goodrich again- tell him about the ventricles and the brain atrophy- he may be of some more help, he may even get in touch with Dr Swift for you- as you know he does not beat around the bush, he will tell you exactly what he thinks you should do.
Please call me if you don't hear from someone by tomorrow. If you do speak to Dr Swift, don't worry about calling- just take Cristian and go there. And remember we are praying for Cristian and you.
Love,
Kim

March 26th, 2004, 09:11 AM
Dear Nilda,

Kim is 100% right. I would not wait any longer. I would get in my car and go to Dr. Swift as an emergency visit. I do not know how far away you are from him but I would go . The information this other dr gave you is what he sees(but he obviously does not know HUnter Syndrome) and that whole paragraph you wrote is EXACTLY what they said to me about my son and his brain. Cristians brian is not shrinking!!!!!!It is being compressed by PRESSURE!!! KIM IS RIGHT!!!!

That is EXACTLY what they told me and they said it was related to HUnters and there was nothing they could do. I had taken Chase to John Hopkins in Maryland and thought for sure they were the best. I left thinking in my heart"no they are wrong" I then went to NY where they too agreed with John Hopkins. I still said "No they are wrong too" The suffering my son went through could have been lessoned had I persisted sooner.I waited another 3 months while my son cried and cried and held his head and lost all speach and finally the look on his face was "mommy I am going to die in pain" I picked up and called the geneticist back in NY, and said "Find me the best Pediatric Nuero surgeon in the world, I need to get Chase there. I don't care if it is in another country, find one" He said "Well he's here upstairs today and his name is Dr. Goodrich.WE have taken your sons scans to him and he too feels how we feel, no hydrocephalus".... I said "I am coming in now as an emergency to see him." I did......Dr. Goodrich said, "YOUR SONS SCANS SHOW BRAIN ATROPHY,DEMENTIA, AND ENLARGED VENTRICALS AND IT SHOWS THE BRAIN IS SHRINKING AND DYING...... I DO NOT THINK A SHUNT WILL HELP HIM.HOWEVER...... THE CLINICAL SYMPTOMS YOU ARE SAYING HE DISPLAYS ,CRYING HOLDING HEAD, RUBBING EYES. LOSS OF SPEECH, LOSS OF BLADDER CONRTOL, IRRATABILITY, DIFFICULTY WALKING ETC.) TELL ME THEY ARE SIGNS OF HYDROCEPHALUS.

I BEGGED HIM CRYING TO PLEASE PLEASE BELIEVE ME THAT I KNOW THERE IS PRESSURE AND IT IS KILLING MY SON, PLEASE TAKE HIM IN AND SHUNT HIM. He was very taken back by my upset. HE AGREED HE WOULD TAKE HIM TO SURGERY. AND......HE WOULD MEASURE THE FLUID UPON OPENING HIM AND IF IT WAS HIGH HE WOULD CONTINUE ON WITH THE SHUNTING."IF IT IS NOT HIGH THEN WE WILL HAVE PUT YOUR SON THROUGH A SURGERY THAT WAS NOT WARRENTED IS THAT WHAT YOU WANT?" I SAID "TAKE HIM NOW" HE SCHEDULED TWO HUNTER BOYS MY SON AND ZACH JONES FOR THE SAME DAY. ZACH HAD SAME CLINICAL SIGNS BEING TOLD THE SAME, NO HYDROCEPHALUS.


AFTER THE SURGERY, DR. GOODRICH CAME OUT SAYING'' MOM YOU WERE RIGHT''HIS PRESSURE WAS INCREDIBLY HIGH. THIS NEEDS TO DOCUMENTED IN ALL TEXTBOOKS .THE CFS FLUID (brain fluid)FLEW OUT PASSING THE HIGHEST MARK ON MY GAUGE AND I CAN NOT EVEN TELL YOU HOW HIGH IT WAS. OVER 50 AND IT SHOULD HAVE BEEN UNDER 10. MOM YOU SAVED HIS LIFE HE WOULD HAVE DIED " and i repeat here again"YOUR SON MUST HAVE FELT LIKE HE HAD A MAC TRUCK PARKED ON HIS HEAD"

Zachs pressure too was the same that day.

Nilda . Call Dr. Swift as that is the dr that Dr. Goodrich recomended in your area. Don't wait.
I can only share what happened to Chase but I hope that will prevent another child from suffering.

Kim, if you are closer to Nilda and you know Dr. Swift, can you help Nilda get to Dr. Swift?

My heart and prayers are with you Nilda and with little Cristian.

Call now....
love Rosemarie Veliz and Chase

momtoty
March 26th, 2004, 09:30 AM
Rosemarie,
Thankyou, I don't know how close I am to Nilda, but I am in Texas, and I will help in any way I can.
Nilda,
My number is 281-360-7468 and my cell is 832-526-7270. Call me, I will help in any way I can. I will call Dr Swift's office, I am about 4 hours away from Dallas (Houston) I will meet you there if you need me to, I will pick you up, tell me what you need.
We are here for you and Cris.
Love,
Kim

mom2cris
March 26th, 2004, 09:59 AM
Thanks Rosemarie, and Kim. You are great. If we have to go to Dallas we will. My husband is ready!! My sister in law will go. She is an RN. She went with me yesterday to the neuro and she too was annoyed with what he said. He didn't have any answers. We live about 6 hrs. from Dallas, but it would be worth it!! Last night was a good night Cristian didn't have any crying spells. He watched his favorite movie the IRON GIANT and Austin Powers, go figure???? :lol:

Anyways, I emailed Dr. Goodrich just awhile ago. I will be checking off and on to see if he replies. I told him the neuro had no answers and when I told him what Dr. Goodrich said to look for about the lower part of his brain and the spine and he said he would look through the films again, he did say there was some kind of detachment of something and "perhaps" it was causing him some kind of discomfort. And then he said he would call me. Yeah, one more day of waiting. Unbelievable.
Everyday around the same exact time he has crying spells. Everytime he hits, and screams, bites and rubs his eyes, scratches his head and their is nothing I can do, but I am getting so much answers from you all. Thank you so much. You are so much help. I need to start making araignments for my other children and make sure they are taken care of if we just pick up and leave for Dallas. My husband needs time to ask for an excuse from work, but he will get it or he will quit!! My son comes first!! I will let you know what Dr. Goodrich replies.

Nilda

March 26th, 2004, 10:26 AM
Reading all of these posts reminds me of something I have to tell myself and everyone else who doubts my ability to care for Seth............. YOU ARE YOUR CHILDS BEST ADVOCATE. We as MPS/ML parents have to make life saving desisions all the time, its not "fair" but it is the way it is. Sometimes that can be overwhelming and , I know I wish someone could decide for me....just once. But I have to look at it like this.....what would the outcome be if I let someone else (even a doctor) decide anything for me or Seth? As Im sure you all have had to do before, there have been countless times that my husband and I have gone against what a doctor says and have forced things to be done that the doctor said didnt need to be done, and it has turned out that WE WERE RIGHT and our child is "better off" because of it. I prasie all of us for having the strength to do what we do on a daily basis :bow: thats why we need to stick together and support each other as much as we can. "Its us against the world"....well OK maybe thats alittle dramatic but you get the idea :lol:
Misty

The Rea Family
March 26th, 2004, 10:39 AM
Nilda,
I just wanted to say that i'm so sorry for what you and Cristian are going through, and I hope that you get the answers that you need soon.

mom2cris
March 26th, 2004, 12:38 PM
Dr. Goodrich, replied and said he is currently in Brazil and has mentioned a consult with Dr. Swift. He won't be back until Monday. I just hope Dr. Swift sees him as soon as possible. Thanks again for all the support! Nilda

March 26th, 2004, 01:51 PM
Nilda, good job, tell your husband that maybe he could say his son is having a medical emergency and he needs to go or grab your sister in law and go. I e-mailed Dr. Goodrich regarding these posts last week. He was in Mexico at the time. Man he gets around. I am sooooo sorry to hear you are 6 hours away from Dallas. I had no idea. Did you call Dr. Swifts office and ask for an emergency visit?Did I miss that one here. ? Did they say you could come ? God Bless you,love Rosemarie

Laura Brodie
March 26th, 2004, 02:41 PM
I just want to say we went through Ct/Mri scans 2 yrs ago with similar symptoms! I wish I'd known what I know today! Nilda push push and push again!!! :roll: lOVE Laura

zachiesmom
March 26th, 2004, 05:58 PM
My god Nilda, I wish I could give you the biggest hug from here, You are going through so much right now and I wish we could be right there with you to hold your hand. You keep following your instincts and hopefully Dr. Swift will see Cristian soon, but until then, Know that you are in our prayers and give Cristian hugs and kisses from all of us !!!!!

Sincerely, Brenda

mom2cris
March 26th, 2004, 09:54 PM
Thanks Brenda and everyone else, yes we all need a hug, but things will get better I HOPE!! My neurologists spoke with Dr. Swift and they will set up an appointment sometime soon. They are going to speak again on Monday. Hopefully we will get some much needed answers soon.

I can't get an appointment with Dr. Swift unless he is referred by a dr. and then they will see him sooner, because Dr. Swift doesn't have any openings until May! That is way to long for Cristian to wait. I'll be waiting until monday and will let everyone know when we find out. HUGS TO EVERYONE, THANKS!!!!

nilda and Cristian

Rebecca
March 27th, 2004, 11:20 AM
:group Hope it helps!!!

Anne Cairns
March 27th, 2004, 02:33 PM
Nilda, I can only say my thoughts and prayers are with you
Anne

Sheila George
March 28th, 2004, 02:30 PM
Nilda,

You and Cris are in my thoughts. It did my heart good to read all the posts of everyone offering to help you get in contact with Dr. Goodrich and Dr. Swift. It made me smile to read that Kim would even come get you all and take you to see Dr. Swift. What a great group we have here!! Hang in there, you will get the answers soon and get to see Dr. Swift.

Sharon Cochenour
March 28th, 2004, 11:42 PM
Nilda
Sorry to hear all you and Cristian are going through. Hoping that you will get in to see Dr. Swift soon. :group
Sharon

3coolkidsmom
March 29th, 2004, 03:03 AM
Nilda,
I have just finished reading all of these posts. I have been sick all weekend. If you need any help, Steve and I live just an hour away from Dr. Swift and we will do whatever you need us to do. There is a great Ronald McDonald House just two blocks away from the hospital if you need it. I can meet you in Dallas and help you through the hospital maze there. Please just let me know what you need me to do. Dr. Swift and I are old pals.

You know you are in my prayers,

DebbieV76
March 29th, 2004, 10:18 AM
Please let us know how things are going. I know we are all anxious to hear. Keeping you in our prayers...
Blessings,
Debbie