Waste of Time

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

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Waste of Time

Postby 3kidssane » Mon Feb 01, 2010 5:04 pm

After arguing with our Pediatritions office about giving a referal to a Pediatric Neurosurgeon they called and said that they had made the appointment. I later found out that the appointment was made with a neurologist. I decided to keep that appointment in hopes that they could answer a few questions and give me a referal. That appoingtment was today. When we got there we were first seen by a Student Dr. He did a regular physical, asked TONS of questions pertaining to her health and historey. He asked what her meds wre for and if she has headaches (Hailey has been having headaches since she was 4. We have been told many different reasons why she had them. She now has them almost everyday) He did a balence test (she failed) I was getting excited because I thought someone was finally seeing the whole picture. He went out and said that the Dr. would be in in a moment.

About 5 min. later a Dr. entered the room along side the student Dr. This Dr. was not who the appointment was made with. He introduced himself and then the student said that they felt like this Dr. could better assist us. (no other explanation was given) This Dr. had not preveosly viewed the scans and asked if I had a copy of them. I did so he took that disc from me andplopped it into the computer. He took a look and said, "Well, I don't see that any of her symptoms would be caused by this. I thinkshe is having migrains. He neck and back pain is caused by the migrains. Most likley she's always had this Syrinx it is by chance that it was found. " I was very upset but tried to aked thequestions i had. he blew of every question. I asked him if I should have my son tested because he does have many of the symptoms and he said, "The likely hood of a family member having this same condition is slim to none." He said that I should have her re-scanned in 6 months and that he wouldn't worry about any of it. To top it all off, as I walked out the door I asked him when I should be concerned and he said, and I quote, "When she shows symptoms like headaches, muscle weakness, tingling in feet or hands, or back pain."

I almost punched him in his face. This was such a waste of my time.
Mother of: DD,8 with Cm 1 protruding tonsils 10mm and SM with Syrinx from t5-t7, 4 mm in depth and 5 mm in width, DC'd 2x 6/2010, DS, 4 with enviromental allergies, food allergies and autism,DS 2, DS 5 months.
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Re: Waste of Time

Postby jupes » Mon Feb 01, 2010 5:29 pm

Sorry her appt. did not go well! Sounds like this Doc knows little about CM/SM and is NOT an expert. Went through the same thing when first seeking a diagnosis for our DD! I would seek out a NS who is a recommended CM/SM expert-you may have to travel but it is well worth it! Some experts will see your child as a pt without needing a referral. What state do you live in?

Its frustrating but hang in there!

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: Waste of Time

Postby youngwife » Mon Feb 01, 2010 7:12 pm

:( I am so very sorry! I can't tell you how many appointments Rachael and I have been to that went just like that. :evil:

Hang in there and don't give up!!! I know it's so tough to keep on trying, but when you find a good doc, it will be so worth it! :|

Praying for you to have wisdom and strength for the journey ahead! ((((HUGS))))

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Waste of Time

Postby 3kidssane » Mon Feb 01, 2010 7:13 pm

We live in Kentucky. Thank you for the encouragement. This process is frustrating. I don't think I would have been as upset if she didn't have headsches everyday.
Mother of: DD,8 with Cm 1 protruding tonsils 10mm and SM with Syrinx from t5-t7, 4 mm in depth and 5 mm in width, DC'd 2x 6/2010, DS, 4 with enviromental allergies, food allergies and autism,DS 2, DS 5 months.
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Re: Waste of Time

Postby lttutrow » Mon Feb 01, 2010 9:14 pm

We also went through about a year of these kinds of answers before finding the right nsg. We live near Indianapolis and use Riley Hospital, Dr. Jodi Smith. I noted your daughter's info. in your signature line. My son's CM was 10mm, and his SM went from c3-t5, 5mm wide at its widest. We were told that it was good that we were finally proceeding for several reasons, but one was because he was likely to begin developing scoliosis soon had we not. After surgery, his SM remains at t4-5 and 4mm, but has gotten shorter and a little thinner. I know how frustrating this is, hang in there!!
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Re: Waste of Time

Postby Lipper5 » Tue Feb 02, 2010 3:57 pm

I feel for you! But for our first son it was less frustrating. Only met one Dr along the way that gave us 5 minutes of his "precious" time and said come back if there were more signs and symptoms. (we waited an hour and a half for that 5 minutes) Be patient and you will find the miracle Dr. But we werent so lucky to have our second son scanned so easily. We got the same story you did about not being hereditary and I can tell you that there are a lot more families that have multiple people with it. My dr told us my son was saying he had a headache but it probably wasnt a headache! WHAT? I saw his face I could see his pain and finally after he felt as though a needle was stuck in his head the ped said contact my ns to see what they think! Good luck....t


Krista
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Re: Waste of Time

Postby lttutrow » Tue Feb 02, 2010 5:52 pm

I don't understand how so many drs. can say it isn't hereditary. Not only are there the case studies of it showing up in multiple family members, but there are genetic studies underway to determine WHICH gene it's on...not IF, but WHICH. I realize we're humans not dogs, but they can't ignore that it is devastating to the King Charles Spaniels as an entire breed because of the genetics!! Thankfully, not everyone in a family is effected and not each person who has it is symptomatic, but when another child does have symptoms, what's the harm in taking a peek at an MRI just to be sure since there is such a strong link?? Versus, what is the harm in letting a child suffer in pain for several years, develop spinal cord or neurological damage from having it go undiagnosed? Wouldn't it be a liability from a nsgs. point of view to know a child had a family history, is having symptoms, and they refused to scan to check? Where's there research saying there isn't the possibility for it to be hereditary? arg...
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Re: Waste of Time

Postby youngwife » Wed Feb 03, 2010 6:21 pm

:x Not hereditary?? How can they say that??

I think that probably there are lots of family members that are actually Chiari patients, but just undiagnosed because it isn't the required ___ mm of herniation. :roll:

So, who knows how many relatives would be diagnosed if they could see a true Chiari specialist! :idea:

It is so frustrating to have to be constantly swimming upstream, just to get help for your children! :|
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Waste of Time

Postby nomadmom » Thu Feb 04, 2010 9:32 am

Please push to see a neurosurgeon. We went through exactly the same experience as you last year. The neurologist said it was migraines and wanted to put my Son in a migraine medicine investigation project. I pushed to see neurosurgeon and she said he needed surgery or he would eventually be paralyzed. He had the surgery and she said it was the worst case she had operated on.

As far as being hereditary, my husband has it as well but doesn't need surgery.

Good luck and be strong. Remember nobody knows your child better than you and sometimes we have to scream and yell at doctors to be heard!

Let me know if I can help you in any way!

Gabrielle
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Re: Waste of Time

Postby 3kidssane » Mon Feb 08, 2010 3:22 pm

Thank you all for your reply's. I feel like i have had to fight for everything when it comes to my children's health. I thought Dr.'s were supposed to help us. I hate that other's have had to deal with this as well, but, it is good to see that it's not justy me. I was beginnig to think there was something wrong with me.
Mother of: DD,8 with Cm 1 protruding tonsils 10mm and SM with Syrinx from t5-t7, 4 mm in depth and 5 mm in width, DC'd 2x 6/2010, DS, 4 with enviromental allergies, food allergies and autism,DS 2, DS 5 months.
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Re: Waste of Time

Postby wondermatx » Tue Feb 16, 2010 2:10 pm

let's see. my mom, CM1 w/syrinx dx 2006, myself CM1 dx 2008, my son CM1 w/syrinx, and tethered cord with poss CVjunction instabillity dx 2002, my daughter CM1 w/CVjunction instability (fusion) dx 2005. we all had different symptoms! don't give up!
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