MEDICAL QUESTION ONLY...my step son has something going on and the doctors can't figure it out.

Prayers for you Deanna, your stepson and all your family in finding out soon what is happening. I'm sure the doctors are checking everything possible that may be causing these incidences. Love and blessings, Chris

Prayers for answers & the strength to wait patiently while they figure this out. ~hugs~

1 comment

by pldc 11 May 2015

& hoping it is sooner so less waiting

Does he have a pacemaker? My husband had what I told the doctor were seizures. He passed out and threw his arms and legs around. He did not remember anything that happened but he knew something had happened. He heard voices of people that were not there. I called 911 when he had one of these episodes and they admitted him to the hospital. Sense he has heart problems, they put him in a heart unit with a heart monitor. He had one of the episodes and it showed up on the heart monitor. They then checked his his pace maker, defibrillator. This was the problem. They made an adjustment to it and so far he has not had any more that I am aware of. It was very scary when it happened. Joyce

1 comment

by camylow 11 May 2015

No he doesn't have a pacemaker...thanks for I am glad you found out what was causing you dh problem.

I had a girlfriend years ago that had a son they diagnosed with mini seizures from a form of epilepsy. He would be sitting starring off into space for a minute or two, would appear unaware of anyone talking to him, then come out of it rather quickly returning to normal. His never advanced to becoming unconscious to the point of passing out, so possibly medicine he was given helped avoid that. Hope your stepson gets evaluated to see what is going on. A neighbor's son had grand mal seizures from epilepsy that made him pass out and legs and arms thrash. He could usually tell when one was coming on by slurring of his speech.
Hugs, Angel

1 comment

by camylow 11 May 2015

He doesn't thrash around...just goea down and sleeps...mouth drops and he slurs.

Sorry I can't help with any information, but sending both of you big hugs.. Marian

I have a rare brain disorder called a chiari malformation (CM or ACM) for Arnold Chiari Malformation that the tonsil or even both tonsils of the cerebellum (the brain stem area) drop down into the spinal canal where the head joins the neck, blocking fluid flow through the spinal canal and then up to the brain so the brain does not get consistent spinal fluid flow. The cause is a birth defect that the skull is too small for the amount of brain matter and therefor the brain grows into the spinal canal opening. There are patients with this that have seizures and also what are called drop attacks that sound similar to what you are describing. Due to the brain stem often being compressed and then the brain not getting the appropriate spinal fluid flow it can make symptoms from just about every part of the body, usually the parts that the brain stem regulates. The usual reason for an onset of symptoms is from having a whiplash type injury or head trauma. Often patients have terrible extreme Headaches. People are generally born with chiari and only become symptomatic once injured like in roller coaster rides that may jerk or whip a person around or from car accident whiplash injuries that may not have even seemed very bad at the time but the from that point on, the person seems to get worse and worse. Pressure at the back of the neck, like in beauty salon hair washing stations or if they tip their head back, like at the dentist are also common causes of increased symptoms.

In the last 10 years or so I have seen Chiari being included in many of the medical shows and evening weekly shows from Extreme Home Make over, DrG Medicine Woman, House and others. Not all information was totally correct, but it at least made people more aware of this disorder.
There is a web site http://www.wacma.com/info.htm for World Arnold Chiari Malformation Association that you can get more information. If you, or he, reads the information and it seems to sound all too familiar, please send me a PM and I will try to help where possible. Too many go undiagnosed properly until nerve damage can become permanent and then far too many neurosurgeons are unfamiliar with the surgical advances in the recent years or do not recognize when something is not right, which is why I have the issues I do, as I prepare for surgery #5. I now only go to the top specialists for these conditions. I also am very double jointed, plus have tethered cord at the base of my spinal cord which has compounded my issues but these are not unusual conditions for those with chiari. Hopefully it does not sound familiar. But do hope that you can help him find the answers to the issues he is having. If it does sound familiar, please be reassured that rarely does chiari actually kill someone. If it is diagnosed then never rush into surgery, make sure to only let a surgeon who as done many hundreds of these surgeries, as it is usually when they only do a few a month or year that they do not recognize when there are issues or know what needs to be done to correct the problem. A specialist will give a much better chance of leading a full life after surgery that is IF surgery is even recommended. Being double jointed compromises this since the ligaments and tendons stretch out and the brain stem often drops again further into the spinal canal blocking the fluid flow once again. Then if there is another injury after the surgery called a posterior fossa decompression then a whole new can of worms is opened which also is what compounded my issues leading to a cranial cervical fusion with bars implanted and screwed to the skull and to my C2,3 &4 vertebrae to help hold the head up and to try to prevent the discs from collapsing down and pinching the nerves that come out from between the discs.

Chiari, a Syrinx or syringomyelia could be a cause the symptoms you have described and it would be worth checking out the wacma site just to verify if more testing should be done. It is diagnosed through MRI's but often it is missed by the radiologists and once a specialist in chiari looks at the MRI films they can clearly see the problem, which then has caused needless years of misdiagnosis and medications that may only cause additional problems.

I also included definitions below
The definitions below were copy pasted from http://www.wacma.com/info.htm and http://community.pressenter.net/~...

Syringomyelia (pronounced sear-In-go-my-ELL-ya): This is a disorder in which a cyst forms in the spinal cord due to an obstruction of the normal flow of cerebrospinal fluid (CSF) redirecting it to the spinal cord itself. This obstruction in the flow of CSF results in the formation of a syrinx (a cyst that fills with CSF). When this happens, pressure differences along the spine causes the fluid to move within the cyst. It is believed that this continual movement of fluid results in cyst’s growth (the cyst or syrinx expands and elongates over time) and further damages the spinal cord and connecting nerves.

Syrinx: This is a cyst that forms within the spinal cord. A syrinx / cyst may develop in the cervical region of the spinal cord of those who have ACM. This is because ACM obstructs the normal flow of Cerebral Spinal Fluid (CSF), redirecting it to the spinal cord itself. This results in the formation of a syrinx (a cyst that fills with CSF). See syringomyelia.

Hope this helps someone understand these issues but truly hope this is not a condition that will effect any of you, or your loved ones. I am not a doctor, just a patient who has learned all this through the experiences of my life and from reading the group support sites over the last 15 -18 years as I have been seeking help for myself and also our daughter who also has this condition and also may effect our young grandson which we will find out, once my specialist looks at his MRI's when I again travel out to NY for my next appt and surgeries. Pam

3 comments

by debswebster 10 May 2015

Oh my goodness 'pacmp' you appear to have a very complicated set of symptoms to your illness. May I wish you a good outcome on your next visit to your Dr. I hope they give your Grandson the "all clear". Blessings to you.

by pacmp 10 May 2015

Thank you for reading the long post. One day living totally normal healthy life and a simple car accident started my journey on this road that has changed my life and those of my family. I too hope that our grandson gets the all clear but I know I need to hear that from the specialists. I appreciate the blessings offered. Pam

by pldc 11 May 2015

Pam you are amazing!

In Epilepsy, there can be a mild form where they have what is called,petit mal, with this there is an absence of convulsions. .whatever it is it needs a proper diagnosis so it can be treated as soon as possible. They can lose consciousness with this//Lillian

when the Drs. have a hard time to figure something lke this out, I have known several (including me) have gone to a homeopathic Dr. and gotten help. It's worth a try.

Sorry I should have posted here... Many years ago my friend had epilepsy , and she used to do this kind of thing , she could be walking down the street then have a second or few that she would drop what she was carrying not be able to speak , go floppy , but then carry on as if nothing had happened. some times they were bigger , Hope you get this sorted soon.
Hugs Pam.

I saw something similar on ER. I know that does not help, but Dr, Sheperd (McDreamy) did brain surgery. season 8 or 9.

Could it be some kind of stroke. This has to be sorted out before he really hurst himself. Please keep us posted.

Sounds like the mild form of epilepsy to me.
Doctors should know that. Epilepsy can be a result of head trauma and it can occur 4 years after a good hit to the head or several hits to the head. Or, worse as a result of a tumour on the brain, BUT AGAIN, the doctors know this. So he SHOULD have been tested for these things.
I am not a medico, just have a good memory for these things and have known people with both these causes with the same result.
The lady with the head bang cause fully recovered while the one with the tumour, didn't as her tumour was inoperable. She still works but frequently goes to work looking like she has been in a fight as she is covered bruises after a fall from her seizures if the warning comes as she is crossing the road for example and hurries to get off the road.
Just thought, another person I know of has this problem, but she is an uncontrolled type 1 diabetic.
So no wonder the doctors are having problems figuring it out.
Good luck.

2 comments

by camylow 09 May 2015

thanks.....they did give hime some meds to try...dh said he seemed to have improved the couple of days he was there.

by justsew 09 May 2015

I am going back years , but my friend had Epilepsy and she did this kind of thing. I hope you get it sorted quick .
Hugs Pam.