Seriously in need of Help;

By Opae Monday, May 04, 2009

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Hi, My name is Kelsey. I am 15 years old, and for about a year I have been been suffering from Chronic pain in my Neck, and back of head. It first appereared in the form of the neck pain, and then it started with the lower part of the back of my head. Ive seen many many MANY neurologists, neurosurgeons, psychologists; and to this day not one thing has even touched the pain im in. Recently (about 8 weeks ago) I had a cranial decompression for my Chiari 1 Malformation. We were really hopeful this would stop the pain, but it was unsucessful; And in the process has now caused some heart problems. I have also been diagnosed with Autonomic Dysfunction or Dysautonomia, Postural Orthostatic Tachycardia Syndrome or POTS, and Nerurocardiogenic Syncope or NCS. Ive taken many different medications, Such as Depakote/Lyrica/Topomax/Imitrex/Migranol/Morphine/Dilaudid/Percocet etc. Other than treatment with Medicine, Ive also tried Nerve Blocks/Root Blocks/Massage Therapy/ and Physical Therapy. Im really not sure where to go from here. I used to be a active healthy teenager, I was so happy to finally be in highschool but That ended quick. Im homeschooled now, and my physical therapist says that I have the muscle mass of a 75 year old women. If anyone can help or maybe give me your opinion, It is gladly appreciated.

Thanks.

Underlying Heart Condition

Comments (3) | Add comment

Karen

5/ 6/09 1:46pm

Keep Fighting, and stay positive! I know its hard but you have got to...

niki lawless

5/ 6/09 6:20pm

Kelsey I am so sorry you are going through that, it sounds terrible. I know about not being able to live your life to its full potential due to pain but nothing like you're expressing. You sound like you're a strong girl. I am sending positive thoughts and energy your way. There are many different routes of healing natural, hollistic, chinese medicine, conventional medicine, etc. All I can say is to keep up the search for what works for you and don't give up sweetie. Take care of yourself.

llynn

5/10/09 11:11pm

Hey,

I am a little bit older than you but not by much. I am a 25 year old female, and I was also diagnosed with POTS about 2.5 years ago. I have constant neck pain in the back of my head, it is almost a pressure, I have not been diagnosed with chiari malformation but also have had a hard time finding a doctor who knows much about POTS. The neck pain is very hard to deal with and I understand how you feel. Sometimes the neck pain and pressure gets so bad it puts pressure on my eyes, I just lay on a heating pad. I have tried chiropratic, physical therapy, and steroid shots. The shots helped some, and so did the physical therapy. But it is still a ongoing issue. I am sorry to hear that you are having the same problem. The POTS create numerous other systems, and my neck pain gets worse around my menstrual cycle. Hope you feel better.

Seriously in need of Help;

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