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12 Year old daughter suffering with Chronic Neck pain

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Old 01-29-2016, 11:24 AM   #31
Bryanna
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thowell,

Thanks for checking in with us.

I'm sorry you decided not to follow through with the Functional Medicine physician. If it weren't for the financial burden, do you think that she would have been able to help your daughter?

It is unfortunate that your insurance coverage does not provide affordable out of network benefits. But that's done on purpose to keep people from seeking anything but conventional care leaving us feeling trapped into having doctors we wouldn't normally choose. This way the monies keep feeding the allopathic healthcare system that keeps failing the public.

It breaks my heart that your daughter is suffering so. I can only imagine how distraught you are about all of this too. Hopefully today will be a little better day.

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Just wanted to check in and record our progress or should I say lack of!!!

Saw Orthopedics which was referred by Pediatrician, what a waste of time!! Dr. literally walked in and without even looking at dd12 decided it wasn't an Orthopedic issue!!! Ugh! We have been going round and round with Pediatrician since her insurance requires everything to go through her.

We are seeing a new Geneticist. The IFM doctor we saw was only able to go forward if we were able to pay around $3500 for testing that her insurance would not cover and she was not willing to work with our Pediatrician. So Dr. Shah, the Geneticist, is willing to send everything through Pediatrician so insurance will cover very expensive testing. So, now back to fighting with Pediatrician. She made a decision over a year ago that she thought this was all in dd12s mind and that nothing was medically wrong with her so getting her to do any testing or referrals is like pulling teeth!!

She has just agreed to write referral to Pain Management so waiting to hear from them now. We go in to see Pediatrician tomorrow afternoon and try to convince her to order genetic testing.

Dd12's symptoms are worse if anything. She has had a few weeks in the last several months where her pain was more of a 4-5 than the normal 10 for her. The last 2 weeks has been really bad. She is very dizzy, light-headed, fatigued, extreme pain in legs, ankles, and wrists. She has dropped 8-9 pounds in last 30 days and barely gets out of bed most days. Her heart rate is high, normally around 135-140 and the headaches and neck-shoulder pain are non stop.

I am getting very worn down and most days bounce from anger to sadness when see cant see me! I just want her to feel better. I just want to know what is causing this and that someone is trying to make her feel better. Instead, we get shuffled from one doctor to the next and get no closer to answers. The few doctors that think they can help require testing that is crazy expensive and we are left to fight with insurance!!!!!!!!!!!!!!!!!!!! UGH!!!!

Ok sorry for the rant just needed to get it off my chest.
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***I have been in the dental profession for over 3 decades. I am an educator, trainer and extensively experienced in chair side assisting and dental radiography. The information that I provide here is my opinion based on my professional experience and is not meant to be taken as medical advice.***
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Old 01-29-2016, 04:06 PM   #32
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Thank you I will check on this. Doc has referred her to a PT that specializes in neck pain. She is also set to see Pain management with a doc that also specializes in neck and back pain in children. So fingers crossed that one of these will help.
I'd just like to add that please have your PT check each and every one of here neck & posterior shoulder muscles in (relatively) isolated positions. They have protocols for neck muscles, shoulder muscles, rotator cuff etc.

Heres a hypothesis, a long time back when sleeping in a certain awkward position, a muscle is "switched off" - the brain perceives it as being under threat of damage, or its contraction causing damage. Others (which are not designed for the purpose) compensate. The pain goes and comes as long as aggravating activities are kept to a minimum.

Injured folks automatically - without realizing - tend to do that. Over time, the repeated trauma on the overactive muscles or their impingement on additional nerves etc - flares up the pain & the brain, nervous system say enough.

Reason I state all this is because this is the case for many & since you are in the US, trust me, good PTs are many.

You may have to travel to find them but the effort will be worth it, also some answers can be real simple. Reason I am hoping that the answer is straightforward, is because fingers crossed, your daughters "complex results" have come back ok. It could well be something this "dumb" which is causing so much discomfort. Good thing is she can recover fast!
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Old 02-05-2016, 01:06 PM   #33
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Last couple of days for dd has been really bad. After our trip to her pediatrician last Tuesday I could tell she was really trying. Doc basically told us that there is nothing physically wrong with her and that this is a result from anxiety and depression. She said dd12 was not to lay in bed and that she had to get up and get moving.
All last week and beginning of this week she has gotten herself up everyday by 7 AM. Taking a nice morning walk with her dog, taken a shower, eaten breakfast and completed school work. While I was glad to see her putting in so much effort I could tell her pain level was no different but instead she was pushing through it. Everyday by noon she is exhausted but still she tries to keep going. Wednesday morning this all stopped. She woke up in so much pain she could not even left her head off pillow. She says her entire body feels like it is hurting but most pain in neck, head, wrists and ankles. She cried while I washed her hair for her because it hurt for me to even touch her hair.
I am worried that she is giving up hope. She is starting to think noone will figure out why she is in so much pain. Sometimes I worry about that too.

We have appointment with new doctor at the Pain and Spine Medicine Monday and he specializes in children with chronic pain so I am hoping he will figure out a way to help her. At this time she is on no medication. The basic, Ibuprofen, Tylenol, Flexeril, does nothing for the pain so she doesn't even bother trying. Pediatrician had nothing to prescribe as she thinks none of this is real. So we continue to chug along trying not to lose our minds and comfort DD as best we can. Just wanted to chronicle our journey.
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Old 02-05-2016, 01:34 PM   #34
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Did they check the C spine MRIs X Rays very closely to verify that there are no extra cervical ribs?
Sometimes they are missed, or as children grow , so do the extra c ribs and they begin to cause more problems..

If it has been awhile since the imaging, a re check or at least fresh x rays might be a good thing..

c rib images-
https://www.google.com/search?q=cerv...IVVP5jCh3FgAi2

Our Thoracic outlet syndrome (TOS) forum has more related info or use search tool for past posts.
http://neurotalk.psychcentral.com/forum24.html

Expert PT or expert chiro eval/assessment might be helpful .
Often MDs will not even touch or palpate anymore for issues... they leave that to the PT persons..
Any PT for the neck at all yet?
Just want to bump this info up- and add links-
if nothing is showing on MRIs or other testing - And TOS had not been ruled in or out by any drs or PTs ( only very knowledgeable DRs /PTs know enough about TOS to "see" it many have bias and dismiss automatically)

useful sticky threads - TOS - PT/DRs - Therapy -
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread135.html
http://neurotalk.psychcentral.com/thread125577.html

I actually had the best recovery with a very good gentle chiropractor-
he used ultrasound, IF stim, Low level laser, massage, gentle adjusting, trigger point work....

None of drs have rx'd Pain reliving PT??
* Not weights or thera bands!*
mainly the modalities I mentioned above - to release the muscles so they can soften..& loosen.

Or has RSD/CRPS been looked into at all?
http://neurotalk.psychcentral.com/forum21.html
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Old 02-05-2016, 01:43 PM   #35
thowell
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Quote:
Originally Posted by Jo*mar View Post
Just want to bump this info up- and add links-
if nothing is showing on MRIs or other testing - And TOS had not been ruled in or out by any drs or PTs ( only very knowledgeable DRs /PTs know enough about TOS to "see" it many have bias and dismiss automatically)

useful sticky threads - TOS - PT/DRs - Therapy -
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread135.html
http://neurotalk.psychcentral.com/thread125577.html

I actually had the best recovery with a very good gentle chiropractor-
he used ultrasound, IF stim, Low level laser, massage, gentle adjusting, trigger point work....

None of drs have rx'd Pain reliving PT??
* Not weights or thera bands!*
mainly the modalities I mentioned above - to release the muscles so they can soften..& loosen.

Or has RSD/CRPS been looked into at all?
http://neurotalk.psychcentral.com/forum21.html
She does have referral to see PT on the 15th of this month. It just takes forever to get into see them. The geneticists we saw (on our own) did list CRPS as one of the main possibilities along with Connective Tissue Disorder. However her pediatrician dismissed this idea.

Her insurance is a HMO so we cant do anything without her PCP and right now she is convinced this is all in DD's head. She will not order any further testing and has referred her to Pain Management and PT. So I hope and pray one of the docs we are referred to will see something different and be able to convince her PCP to move forward in further testing. Thanks for the info and links looking them over now.
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Old 02-05-2016, 01:50 PM   #36
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Do you have to stay with that PCP??
Can you search around for another that is more open to helping?

Have they specifically checked for extra cervical ribs? even small or partial can cause trouble.
Sometimes they are missed or not actually checked for by drs or techs..or imaging misses them..

[Her right shoulder is obviously higher than the left. Her eyesight has decreased, she was tested at around 20/60 and is scheduled with an Opthamologist. She has constant nausea, flushed cheeks, and sharp twinges of pain in jaw, ears, leg, and head.]

perhaps upper cervical chiropractic might help- sometimes during birth a baby can sustain a slight neck/shoulder injury to the area-
http://orthoinfo.aaos.org/topic.cfm?topic=a00077
www.upcspine.com
SIGN / SYMPTOM CHECKLIST-
http://www.upcspine.com/self.htm
If possible you can always go on your own for an eval of her C1 C2.
Many will give cash discount as billing ins is an added cost & time for the office.
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Old 02-05-2016, 01:59 PM   #37
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Originally Posted by Jo*mar View Post
Do you have to stay with that PCP??
Can you search around for another that is more open to helping?

Have they specifically checked for extra cervical ribs? even small or partial can cause trouble.
Sometimes they are missed or not actually checked for by drs or techs..or imaging misses them..
We can request a new PCP but that takes roughly 6-8 weeks. Just leads to more waiting for dd.

One doctor she saw did mention and extra rib and had an MRI done but the imaging department said all was normal.

We are considering changing PCP if we do not get any help from Pain Doc or PT. It just adds more time to her waiting with nothing getting done. I am still working with geneticists who is trying to get us a cash price for testing he wants to do. At this point we are prepared to borrow anything we cant not cover ourselves. The geneticists is also having another radiologist/neurologist look over her MRI to see if there is anything that has been missed.
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Old 02-05-2016, 02:11 PM   #38
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Are you requesting copies of all tests /reports for your own records?
it's just easier to have them in your own file if you decide to go outside Ins on your own..or for other opinions..
Especially with hard to dx cases... often there can errors in the drs records too.
So those might be good to get and review , and correct any misinformation, something vital may have been glossed over or missed completely.

If PCP report says anxiety based sx, that can be a big road block going forward..when others read that.
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Old 02-11-2016, 01:42 PM   #39
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Update-
Had appointment with Pain Management doctor and once again a huge waste of time. It was obvious that he was in agreement with Pediatrician before he ever saw DD12. He too says there is nothing physically wrong with her and it is all physiological. So that was no help.

We are moving forward with genetic testing and paying the $945 out of our pocket. Hubby and I have talked alot of this situation and while we are unsure if what the pediatrician is saying is correct or not we just do not think enough things have been ruled out to make that decision. I guess I just feel like MRI and xrays do not seem to be enough to determine that there is no underlying cause for this pain that she has endured since she was 6!!!!

So geneticists is speaking with lab today to coordinate Dd's testing. Meanwhile she has first appointment with PT on Monday so I will update again after that meeting.
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Old 02-11-2016, 04:59 PM   #40
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Has she been evaluated by a mental health professional to see if they think there is an anxiety issue or not?
I might do that before genetic testing.
That would clarify if it is an issue or not.
If not you could wave the results in the other drs faces...

But I wouldn’t go back to any unhelpful drs again unless I had no other option..
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