Chiari Online Support Group

Why do they not understand


#1

So tonight I had to take my daughter to the ER. Her back, lower back, rib and neck pain are getting unbearable. It is hurting her to breathe. When she moves it is so much on her that her whole body goes into tremors, pretty intense ones. Tonight was the worst though. I took her in hoping they could do something for her to make her comfortable. I have tried tylenol and warm compresses and they did not work. Anyway, we get to the ERand I had my list of things she has been going through (because lord knows I can not remember EVERY symptom she has had). I give it to the nurse and she brushes it off. I again gave it to the doctor ans he brushes it off. I inform him that she is thought to have CM and our NL appointment is in two weeks. she check her over and every time he moved her she would shake violently and tear up in pain. He did an x-ray and said thet since we had a team of docs who seems to have a plan she was not an emergency and there was nothing he could do for her, sent us home. The look on my daughters face was devastating. She began to apologize to me, me of all people, for wasting my time. I feel so helpless. He quality of life is leaving her more and more every day and I have to wait to get in to see a NL and that will take who knows how long to get anything. This is so frustrating for me, I can only imagine how she is feeling. The little girl in my profile picture is a completely different little girl these days. She always looks so sad and so tired and just worn down. I just want to help her get to the point of recovery from all of this.


#2

Thank you both. It means so much to have such wonderful support and advice. I have come to the decision that if another ER visit is warranted we will be headed to Greenville, NC (about 1 1/2 hour drive) the pediatric ER. That is the home of East Carolina University and that is where her cardiologist and hematologist are and it is an amazing medical community, we spend alot of time there already. The docs here are just not going to touch her.

I do have a question. This back pain she is having.... She says it is stiff and burning. It did not respond to touch except near the lower back right on her spine, that was a little tender to the touch. Her Xrays were perfect. She also says that she has the same pain/stiffness/burning in her neck and ribs. When all of this is happening she gets extremely nauseous. Plus when these things are happening she goes into such extreme shaking/tremors from head to toe when she moves from one position to the other. Is this something that can be related to CM?

Again thank you for the amazing support and kind words!


#3

ECU is incredible.

Beeba and Emmaline gave you excellent advice.

I would definitely take her to ECU's Pediatric ER and refuse to leave until they find the cause for these symptoms.
She really needs to be seen by specialists that are educated about Chiari Malformations and POTS. I am not surprised her xray was perfect. It is very possible your daughter has a couple of things going on? Has she ever had a MRI of the spine? Sorry for all the questions. I know you are very worried. I may be able to give you some questions to ask the Dr's. That will help with her diagnosis and treatment. Tracy Z.


#4

TracyZ- She has POTS (cardiologist) and Von Willebrants (hematologist). There is no doubt in my mind that her POTS is being agitated by all this, it usually flares up for a short period when she has a cold. She does feel dizzy all the time. Is there something I should be aware of witht the nausea and shaking/tremors?

You have all made me very confident in my decision to take her to the ECU Pediatric ER the next time the need arises. Thank you.


#5

Tracy, I was treated for seizures this year, or at least what we thought were seizures. After meeting with my NS, we found out they were not actual seizures, but rather “seizure-like” activity and/or convulsions caused by pain. I certainly think that her “violent shaking” could be a direct result of the amount of pain that she is in. Sometimes your body simply can’t handle being in that much pain. That’s how it was explained to me. I still have episodes like that, even though I am post-op, but they are MUCH less frequent. You are both in my thoughts and prayers. Please let us know how she is doing.


#6

Thank you she is beautiful and I hurt for her. On top of that she is a twin and has been watching life continue for her sister with their first year in high school and getting a driving permit. Her sister tries so hard to make her feel part of everything but it is hard, very hard.

The VWD is a factor 8 disorder. It causes easy bruising and free bleeding. She had periods off the chart until we finally figured out the right birth control to get it under control. The her nose can sprew blood at any given moment, but the nose and periods have been controled for about a year now. Her POTS category is orthostatic intollerance. She can have near faint black outs. She will fall but her eyes are open and pupils dialated. That has not happened for about a year. But she is well aware of "episodes". They happen most when her immune system is compromised. The blood pressure variances, rapid heartbeat, a completely "loopy, disconnected" feeling she gets completely flushed and has to lie down with knees pulled into the chest. When she was younger she had very tramatic "stomach migraines". Those are not so bad anymore. But with her POTS her gait is just out of whack. She can usually get it under control unless it starts happening too frequntly. Then her Cardiologist will put her on Florinef for a month or two until she gets back to normal, it works wonders for her. The problem with that now and the reason she is not taking that now is because Florinef affects pressure in the skull, and she could not handle it when he gave it to her this time. POTS can be a bear sometimes, but when you throw other issues on top of it it is a mixture for being completely miserable. I can not say I understand your frustration with it but I can relate as it has been a ride with her.


#7

She is on the lower end of the spectrum in the VWD, so no she is not a hemophiliac. Her cardiologist and I will be talking again when he returns from vacation after the 1st. He is an amazing doctor and he checks on her frequently. My daughter, Kristal, does not have the classic headaches that everyone talks about. She has alot of head pressure and headaches but it is the other issues that are taking her down. I have talked with Dr.T and he is great. I may contact him again with all this new stuff going on. I am actually very curious about the possiblity of the viral meningitis she had a month ago is what made this all kick start. Since that is in direct relation to the CSF. The meningitis was out of her system in about a week, but all this other stuff stayed and is getting worse by the day....


#8

Something I have learned that helps tremendously when doctors dismiss patient self-reporting or care giver reporting is asking for a copy of the the EMR (electronic medical record) for that particular visit, which shows what the parent or patient reported and rationale of the doctor for not using that information in their rationale for whatever decision was made. If it is not in the EMR, it never happened. SO if there is some adverse outcome, and a patient files a lawsuit, the doctor will claim they were not given that particular information (because it is not in the EMR), if they had known, they certainly would have done X, Y, and Z.

Doctors tend to dismiss any subjective data, pain is a very subjective report. I have also noticed that doctors tend to not have much faith in objective data they did not acquire, such as other doctors reports or reports generated from tests someone else ordered.


#9

I have been making a log about everything going on from start to now sicne everything started going down hill. I pasted it so you can get a little history on this situation:

- Starting in mid October Kristal started showing signs of Orthostatic Intolerance episodes – dizziness, sleeping all the time, headaches, lack of strength, stomach pains, pain in upper abdomen

- Kristal was diagnosed with Mono on 28 October after doing blood tests on 26 October.

- She had all classic symptoms but to the extreme from what I had ever witness. She attempted to go to school a couple of times but was sent home immediately because of appearance and lack of strength and ability to function.

- Her Orthostatic issues were all over the place during this time.

- On November 12 she called me to her room in the middle of the night. She was trying to fall asleep and said she felt a “pop” in the lack of her head. Said it did not hurt bad but felt “tingly” and “weird”.

- The next, 13 November, day she was very “off”, off balance, tingling in the extremities, headache. She also had another “pop” in her head this day.

- On 15 November took her to ER because since the “pop” she had been very off. At the ER we were told that her head issues were of no concern, but she had a slight bladder infection. She received RX for Macrobid and we went home.

- 19 November saw Dr. Hannon, her cardiologist for the past 6 years. After explaining the popping in the head and everything that was going on and he highly suggested we get a Neurologist appointment to have her checked for Chiari 1

- 24 November, after a week of on and off balance, tingling in the extremities, headache, she had a full day of bad headaches. Tried to treat with Tylenol but not much relief. She finally went to bed to try to sleep it off.

- 25 November, when I went to check on her she was in her floor crying because of headache, took her to ER, they gave her steroids through IV and that made headache so severe she was uncontrollable, they finally gave her morphine and that allowed her to rest, did spinal tap, did CT scan - she had viral meningitis. Sent home with Percocet and nausea meds. Also bladder infection still slightly showed up so Macrobid for that again.

- 28 November back at ER with extreme headache, morphine again and MRI.

- Radiologist stated that she had a “minor dislocation of cerebellar tonisils”

- Since the popping in her head that is when things seem to start really going crazy in her body. We have had orthostatic issues in the past, about once a year when she picks up a good bug at school. But this is way different. And she is getting more symptomatic and worse by the day.

Here are the symptoms she has exhibited since the “pop” in the head:

- A few episodes of this “popping” in the head, back of head, not in the neck

- Itchy scalp

- Numb/tingle feeling in head, arms, legs

- Very cold sensation in the head and arms

- Pressure in the head

- Heavy head

- Stiff neck

- Extreme headaches

- Stomach pain

- Diarrhea off and on

- Sporadic loss of strength in legs making it difficult to move

- Insomnia that seems to be getting worse

- Burning eyes

- Ringing in the ears

- Heartbeat feels slow when legs and arms are weak

- Heartbeat races when standing or walking for too long

- Pain in legs

- Pressure in head, neck when cough, sneeze, and having bowel movements

- Had instance of severe gag reflex when trying to eat, then when finally was able to eat nauseous for over 24 hours

- Overall “just do not ever feel good”

- Static sound in head “Like when the tv has the white static”

- Body shaking, tremors – especially when pain is present and she moves

- Back aches that cause to feel nauseous

- Have eaten a meal and have the feeling as though never eaten at all

- Times of concentration bring on headaches and nausea

- Feels like someone pushing into the back of head

- Burning pain in neck

- Stinging pain in ribs causing pain when breathing



Beeba said:

I tried to look back over your profile - what led you down the course that this may be chiari? My "first love" was a hemophiliac so I have a fair understanding of that. I am taking that it is a spectrum disorder then? Sounds like the cardio dr is your ticket. If you feel like a number then usually you are but when you feel they liked you and have taken an interest they will help fight and advocate for you. I am so sorry this is happening. I feel comfortable in assuming we all have your back and if it means going in like a screaming banche than we will support your determination. There is an answer. There is always an answer, sometimes you just have to fight for it. It has been a long road for me over the last two years but I am far better and only due to my perseverance. I will get perfect again (well at least health wise )and I do know it is possible with each step and change. She needs that option.

#10

Thank you so much for the advice. At this point every little bit helps. Everyone connected to this site are just amazing!!

painintheneck said:

Something I have learned that helps tremendously when doctors dismiss patient self-reporting or care giver reporting is asking for a copy of the the EMR (electronic medical record) for that particular visit, which shows what the parent or patient reported and rationale of the doctor for not using that information in their rationale for whatever decision was made. If it is not in the EMR, it never happened. SO if there is some adverse outcome, and a patient files a lawsuit, the doctor will claim they were not given that particular information (because it is not in the EMR), if they had known, they certainly would have done X, Y, and Z.

Doctors tend to dismiss any subjective data, pain is a very subjective report. I have also noticed that doctors tend to not have much faith in objective data they did not acquire, such as other doctors reports or reports generated from tests someone else ordered.


#11

An E .R physician explained to me that while in Med School during 1 week time While learning about Other Neurological issues They BARLEY SKIM over Arnold Chiari malformation 1

That’s why …We need to get the schools to TEACH ! If not for us. For the next generation !