Surgery or not??? So confused...

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Surgery or not??? So confused...

Postby mommyof4 » Tue Mar 01, 2011 6:28 pm

Hi everyone!

I have a dilema and it's very complicated. My son is 3 1/2 and has been fighting an unknown blood disorder since he was 1. This blood condtion has caused him to have monthly blood transfusions and now he has iron overload. Iron overload can potentially damage his liver and heart so he is taking medication to try and remove it from his body. He is having his spleen removed in the summer with the hope hat this will help with the frequent blood transfusions but I have been warned many times that it may not help. He may end up with a bone marrow transplant. I have had an opinion from every doctor in Michigan and two outside of the state and no-one can figure out what his condition is. So, needless to say he has been sick for a while.

We were in Chicago in September for a special MRI to measure the iron in his liver. The radiologist saw the syrinx on his spinal cord and then he was later diagnosed with Chiari 1. The syrinx is quite extensive starting at the lumbar spine to the thoracic part of his spine. From what I hear, this is an unusual place for a syrinx. So, he does not have any symptoms. He is right on target with his development, great coordination, no headaches or swallowing difficulties and nothing really significant to say he's suffering from the Chiari and Syrinx. There have been some things that have happened in the past that I assumed were from the blood condition that could have been related to this but I do not know for sure.

I live in Michigan and have had 3 opinions here. Two have said to do the surgery and do it asap. The third has said we can wait and watch. After our last consult with the doctor we chose (Dr. Maher a U of M - the one who said we could wait), we learned of some of the risks involved with waiting so we decided to schedule the surgery. The surgery is in 3 weeks. I have had many second thoughts about this. I e-mailed Dr. Frim from Chicago and he promptly responded to me. He asked all about Gabriel's blood condition and seemed very concerned about doing the surgery without having a diagnosis. He also said that when he see's the syrinx in the place Gabe's is at it's usually because of a tethered cord which 2 doc's said he does not have and 1 says he does. The one that said he does doesn't seem very trustworthy to me. He welcomed us to come to Chicago to see him.

So, I'm so torn and confused. Does anyone have any insight at all? Have you had any experience with either of the doctor's that I have mentioned? It is evident to me that Dr. Frim is definitely an expert in Chiari so I'm leaning towards canceling the surgery for his opinion but at the same time am afraid that I am complicating all of this.

I welcome any thoughts...

Rebekah
mommyof4
 
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Re: Surgery or not??? So confused...

Postby medicpt » Tue Mar 01, 2011 9:12 pm

Dear Rebekah, As a mother it is your job to consider all the options and concerns for your child. You are doing that and that is not complicating things.... Things are however complicated with the multiple things going on with your child. I am so sorry you and your son and family are going through all of this. My daughter had her surgery 5 months ago at 3 1/2 years old and leading up to the day, I questioned if we were doing the right thing.... It is HARD to send your child to surgery even if it is necessary. I know I wanted to cling to her as they were ready to wheel her to the OR, and after she was gone, I cried... I couldn't help it... Now that we are recovered, I am glad we are on this side of the bridge...but it was hard... Make sure you are comfortable with the surgery and the surgeon before you proceed.

I am on the east coast and our neurosurgeon evaluated for a syrinx after the CM1 was identified. Fortunately, she did not have one, but he did note that if she had, he would definitively recommend surgery.... All that to say, I think each case is different. It sounds like Dr. Frimm's reservation about his undiagnosed blood disorder is a concern that should not be taken lightly.... and beyond that.... do your research, study all aspects, but don't forget your Mommy instincts.

I wish for you the love and support you need during this difficult time. I pray for a diagnosis of this blood disorder, for wisdom for you, for strength for your whole family.

Blessings, Wendi2
medicpt
 
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Joined: Sun Aug 08, 2010 8:32 pm
Location: Pennsylvania

Re: Surgery or not??? So confused...

Postby mommyof4 » Tue Mar 01, 2011 9:57 pm

Wendi2

I really really appreciate your response. It definitely puts some things into perspective for me. My son's health issues are a full time job and I often question if I'm complicating issues... I have been told by doctor's that having several opinions is not the way to go but I wonder where I would be at today if I hadn't done just that. I am fighting this huge battle for him and that's what I live and breathe. Thank God for my faith because I don't know where I'd be. Anyways, I do appreciate your perspective. My friend who's son has cancer told me the same thing... trust your mommy instincts.

God bless you!

Rebekah
mommyof4
 
Posts: 6
Joined: Tue Feb 15, 2011 10:22 pm

Re: Surgery or not??? So confused...

Postby medicpt » Thu Mar 03, 2011 8:16 pm

Dear Rebekah, It is so hard. You love your child so much and want the absolute best for them... at times it is hard to know what best is... this creates the conflicts. My faith also has been my anchor. I knew that God intends good for me and my child and had to trust that He would give me the insight to make the decisions. You also sound weary right now.... do you have and respite care? It is hard to constantly going to appointments, organizing schedules and making decisions. Although my husband is supportive and very much loves our dtr, the burden of much of the care and decisions fell mostly to me.

Hang in there, and I will pray for you and the entire situation. Please let me know if I can help you in any other way. Did you decide on an appt with Dr. Frim?

Wendi2
medicpt
 
Posts: 78
Joined: Sun Aug 08, 2010 8:32 pm
Location: Pennsylvania

Re: Surgery or not??? So confused...

Postby kbaesel » Thu Mar 03, 2011 11:01 pm

I have taken my daughter to Mayo Clinic in Rockchester MN. They have a great peds unit and I loved the peds neuro. The Surgeon we talked to is Dr. Wetjen (sp might be wrong). With you living in MI that would not be to far away. You could try talk to them and see what they think for an opinion. They are not a surgery happy clinic. My dad has been there (prostate cancer), my oldest daughter (SM and stomach problems), my grandmother (heart and many other conditions), and my dads best friend (lung cancer).
kbaesel
 
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