Needing Advise!

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

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Needing Advise!

Postby Angie2 » Thu Jan 28, 2010 2:12 pm

Hi new to the site. I have two children with Chiari type one, my daughter had the decompression surgery at age 6 about 6yrs ago. She also has cyclete vomiting that she has been dealing with since she was 2yrs old and has been hospitalized on several occasions. My son who is 15 now was diagnosed about 4 yrs ago with ...the chiari. Recent MRI shows went from a malformation of 9mm to a 8mm and a cavernous malformation that has hemorrhaged. Trusting my neosurgeon, he wants to wait till June to do another MRI to see if anything changes. I feel so uncompfortable with this because from what I gather the hemorrhaging is not good at all. Any advise I could use right now! Thanks for listening!
Angie2
 
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Re: Needing Advise!

Postby jupes » Thu Jan 28, 2010 3:18 pm

Hi Angie and welcome!

Sorry you have 2 children with chiari and other issues.

This sounds serious to me! Has your son had surgery or has surgery been mentioned? If you feel uncomfortable with the recommendation, seek another opinion. If this is not possible, I would at least speak with the NS about your concerns. Always best to trust your motherly instincts! What state are you from? Someone can give you names of another expert NS in your area if you wish.

Good luck!

(((HUGS)))
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Needing Advise!

Postby Angie2 » Thu Jan 28, 2010 5:12 pm

Yes surgery has been mentioned, when they first found it. He said it was not needed at the time but would possibly need it some day. We live in Ohio!
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Re: Needing Advise!

Postby lttutrow » Thu Jan 28, 2010 8:16 pm

I don't think it's ever a bad thing to get a second opinion. Since you're from OH, have you seen the chiariansunite.org site? They may be able to help you find a nsg. close to you too.
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Re: Needing Advise!

Postby Angie2 » Thu Jan 28, 2010 9:02 pm

lttutrow wrote:I don't think it's ever a bad thing to get a second opinion. Since you're from OH, have you seen the chiariansunite.org site? They may be able to help you find a nsg. close to you too.

Thank You! Angie
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Re: Needing Advise!

Postby sydney'smom » Fri Jan 29, 2010 12:53 pm

We live in Dayton, Ohio and my 9 yr old daughter was dx last November. Initially we went to see Dr. Kleiner at Dayton Childrens (who was very nice) but sought out a second opinon from Dr. Di at the Cleveland Clinic. I would strongly recommend that you see Dr. Di. It is a 4 hour drive for us, but we feel it was worth it. Dr. Di agreed with most everything the first doctor said only I feel he is more knowledgable about Chiari. We are scheduled to see Dr. Di again in April for a complete series of MRI and an appointment. Keep us posted.
9 yr old daughter with 19mm CM and 1mm Syrinx.
See Dr. Di at Cleveland Clinic and am scheduling a 2nd opinion with Dr. Frim in Chicago.
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Re: Needing Advise!

Postby Angie2 » Fri Jan 29, 2010 4:36 pm

sydney'smom wrote:We live in Dayton, Ohio and my 9 yr old daughter was dx last November. Initially we went to see Dr. Kleiner at Dayton Childrens (who was very nice) but sought out a second opinon from Dr. Di at the Cleveland Clinic. I would strongly recommend that you see Dr. Di. It is a 4 hour drive for us, but we feel it was worth it. Dr. Di agreed with most everything the first doctor said only I feel he is more knowledgable about Chiari. We are scheduled to see Dr. Di again in April for a complete series of MRI and an appointment. Keep us posted.

Thank you so much! We see Dr. Kosnick at Childrens hospital in Columbus, Ohio. I think he is a great doctor and all but I think it is time to get some secound opinons especially with someone who deals more with the Chiari.
Thanks again,
Angie
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Re: Needing Advise!

Postby Janice » Fri Jan 29, 2010 10:46 pm

Hi Angie and Welcome!

Sorry to hear that your children have been dx'd w/CM. Also sorry that your son has a bleeding hemangioma in the brain. I have quite a few spinal hemangioma's that have a tendency to bleed. It's not good, they can cause an increase in existing neurological symptoms - a flare-up so to speak, and sometimes w/swelling in the area of the lesion(s). From what I've read, the blood is absorbed in other bodily fluids (I think it was CSF, etc.).

There are quite a few reputable websites that go into detail regarding treatment, and if/when surgery is advised. While bleeding can increase symptoms, it's seems to be the frequency of the bleeding, size of the lesion(s), and the location, that is used to determine the necessity of surgery. Having hemangioma's is similar to having CM/SM, in the way that some doctors tend to state "they're no big deal". Lesions in the brain might be treated more aggresive than spinal lesions. However, they both have a potential of causing severe neurological deficits.

Again, I'm sorry to hear that your son has a lesion (or lesions) on the brain. Keep us posted on the prescribed treatment plan. It is not uncommon for doctors to initially prescribe the "wait and see" approach. They monitor growth, and any bleeding activity/occurences, through MRI.

I have attached a few links for your review, if needed.

http://www.mayoclinic.org/cavernous-malformations/treatment.html
http://neurosurgery.mgh.harvard.edu/Neurovascular/v-w-94-2.htm

Take care, I wish you all the best in receiving the best treatment for both the brain lesion(s) and CM.

p.s. I think it's a great idea that you're going to seek a second opinion. In serious matters effecting the brain, we should seek as many opinions as it takes until we're confident and comfortable in the prescribed treatment option, and definitely the surgeon (if surgery is required).
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Needing Advise!

Postby Angie2 » Fri Jan 29, 2010 11:27 pm

Janice wrote:Hi Angie and Welcome!

Sorry to hear that your children have been dx'd w/CM. Also sorry that your son has a bleeding hemangioma in the brain. I have quite a few spinal hemangioma's that have a tendency to bleed. It's not good, they can cause an increase in existing neurological symptoms - a flare-up so to speak, and sometimes w/swelling in the area of the lesion(s). From what I've read, the blood is absorbed in other bodily fluids (I think it was CSF, etc.).

There are quite a few reputable websites that go into detail regarding treatment, and if/when surgery is advised. While bleeding can increase symptoms, it's seems to be the frequency of the bleeding, size of the lesion(s), and the location, that is used to determine the necessity of surgery. Having hemangioma's is similar to having CM/SM, in the way that some doctors tend to state "they're no big deal". Lesions in the brain might be treated more aggresive than spinal lesions. However, they both have a potential of causing severe neurological deficits.

Again, I'm sorry to hear that your son has a lesion (or lesions) on the brain. Keep us posted on the prescribed treatment plan. It is not uncommon for doctors to initially prescribe the "wait and see" approach. They monitor growth, and any bleeding activity/occurences, through MRI.

I have attached a few links for your review, if needed.

http://www.mayoclinic.org/cavernous-malformations/treatment.html
http://neuroseven%20moreurgery.mgh.harvard.edu/Neurovascular/v-w-94-2.htm

Take care, I wish you all the best in receiving the best treatment for both the brain lesion(s) and CM.

p.s. I think it's a great idea that you're going to seek a second opinion. In serious matters effecting the brain, we should seek as many opinions as it takes until we're confident and comfortable in the prescribed treatment option, and definitely the surgeon (if surgery is required).

Thank you so much Janice! We got the results of his MRI the day before I had my surgery (a total histerectomy), and I have been going crazy with all this. It has been a week since my surgery and his NS has been out of town. So he has not been able to return my call, and I have just been going crazy. You guys have been very helpful thank you.
Angie2
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