Soooo, We Were Helping My Son, And Bam Went The Large Toy On My Head

[Maxine]

My husband and I were helping my son and his wife with the girls. They spent the night so my son and his wife could celebrate their first anniversary. We also had agreed a while ago to celebrate the next birthdays today ---my dad's and my brother's fall on the same day. It's been a bad week, but my husband said he would make sure I had to do very little. Well, THAT doesn't always work out no matter how well the intentions are.

Anyway, during this week my BPs have still been low----low, low, and heart rates aren't compensating. I can't complain too much on that since I hate having the high heart rates. I'm not sure what's happening with that, but it feels like I'm trying to climb a mountain with half of my body working, and the other half is in so much pain because it's becoming unglued from the EDS. I can't even cross my legs without my knees pulling out, my shoulders puling out when I sleep on my side, and of course you all know about my spine issues, especially my upper spine. There's a couple of time I almost cancelled the b-day party, but my husband said he'll handle everything. Most of the family brings a dish, and all we had to do was supply the meat and another dish. My brownie's were the dish....easy on a bad day. However, today walking wasn't easy----nothing was. My grandaughters are 5 years old and 20 months. the 20 month old had to be with my husband most of the time, as she needs to be watched constantly, and you need strength.

Last night I was laying on the floor playing with Mackenzie, and adorable as she is----she's also as strong as a brute. The next thing I know there's a rather large interactive toy about the size of a small keyboard slammed into the left bridge of my nose, and partially the face. It felt like the house came down on my face. I thought this is it, I'm not going to get out of this one easily. I heard a very unpleasant sound in my neck/head---not sure which since it was in the cervical/crnaial junction. The jolt on my head and neck was stunning. I felt the wind knocked out of so badly, I went into the other room to cry because I didn't want to scare the girls. I cried full force, but kept it down. The day before that I had so much pain I was afraid to move my head, so the night this happened I had been soooo careful all day that day. All I could do was dread what was coming, since every move of my head the weeks previous had been risking sharp dagger pain shooting into my head. It's scary because off the very REAL problem I have with the instability in the cervical/cranail area, and the intense pain on the right side of my head, and the fear the right vertebral artery might have a problem due to it being enlarged compensating for the missing left one. The jolt my head felt from the force of that giant toy coming down on my face was very upsetting. I'm trying to just hang on until someone is willing to help me. I finally have a neurologist who is williing to take a look at those arteries because of some lesions in my brain, AND he's from the Cleveland Clinic, and has agreed to take care of my neurological care regularly.

I'm still struggling with the loss of my friend from a ruptured aorta----complications of her EDS. I was going to go to the ER because of having the wind knocked out of me from getting hit from the toy, but the only thing rushing through my head is how my friend was treated when she went to the ER with very high BPs, narrow pulse pressures, and a diagnosis of NCS and EDS. She was completely blown off, and I felt if the same happened to me I would blow up so badly that my head would explode, and all I could do was continue to cry. Meanwhile, I'm trying to control my emotions so the girls don't get scared. I finally choked it all down, and went out to tell the girls it's OK. I smiled at Mackenzie and took her little, (but very powerful hand) and kissed it smiling at her. She's just being a kid, she has no idea what she's done. Tears still kept coming----pain, emotions, and rage all at once.

Today was really bad for me (Pain wise), but everyone seemed happy----and all were willing to help. My husband cleaned everything up, but fortunately we had help from my son, and several other family members. My pain was crazy bad, but ICE, and tylenol took the edge off, and my son rubbed some of the knots out. He gives the best back rubs because he has the longest bony fingers I have ever seen.

The evening didn't end well though. I told my brother he needs to have his son checked out for EDS. He is so floppy that his head nearly hits the ground when he bends down, and he drops into full splits horizontally---the he bent his body forward down to the floor while his legs were still split. My brother looked at me and laughed looking at me like I was some kind of drama queen. My husband was angry for me, and jumped up and said this was serious business, and I told him to get a cardiac echo done at the very least.

If my head still feels like it's splitting up the back, should I contact my PCP? I just saw him last week, and he's overwhelmed with my health issues-----so much so that he doesn't follow up with normal screening tests----------all of this goes out the window because were always trying to keep up with the other stuff. Poor Mackenzie looked so worried---(what a sweet little heart), and little 5 year old Kaela was worried also. Within 20 minutes or so I fooled them into thinking all was good. I didn't want them to be afraid.

I'm Sad, angry, full of bad attitude all at the same time. I hope I snap out of this, like I usually do. If I could just stop the pain, and my fingers from vibrating from typing this.

Maxine :0)

[Broken_Shell]

Oh Maxine! I am so sorry. It is always so frustrating and depressing when a symptom is worsened by a silly accident or something that happened while you wre trying to live your "normal" life! If I were you I could contact the MD though... you've had an accident and you want to be sure that there is nothing acute or dangerous going on. YOU know your body the best, so trust your instincts! Sending support and hugs !

~ Broken_Shell

[potsgirl]

Maxine,

Kudos on thinking of the children while you were suffering so much pain and not frightening them. I hope your pain is better today, but I'm going to echo Broken Shell in that you should get in to see your doctor and check everything out. Better to be safe than sorry (to state a vastly overused cliche!)

Be well and take care!

Jana

[Maxine]

Thanks for your support -------

I had my husband call my PCP to let him know what happened and to see if I should go to the ER. He said, "Whadaya want me to do about it, go to the ER"!

Well, how about calling them to give the heads up that he was sending me to the ER, as this would have made things a little easier. My nerves are frazzled from not having understanding in support from my local doctors. At first my PCP seemed supportive, but now seems like he doesn't want to deal with it anymore. I didn't want to talk with my PCP because I just can't handle one more attitude at all-------------I was soooo weak, and head was throbbing when he called.

We went, and a nice policeman went in to see how busy they were. They were busy, so we dicided to take our chances and leave. I started to feel better anyway. Still having quite a lot of pain, but ICE, tylenol, and my hard cervical collar is helping. My hard collar seems to be putting the finishing touches on it, meaning the pain must be coming from my neck radiating into my head. Just like the orthopedic surgeon said the excessive movement of my unstable neck is causing the vertebral artery to be kinked causing those throbbing headaches. With the collar holding my head still it stops me from moving my neck.

It sounds like Mackenzie throwing the big toy that felt as big as my house into my head has caused further aggravation to my neck instability issues. I felt a tearing sensation right where my head and neck come together. I know this sounds a little dramatic, but this is exactly what if felt like. I tried to think of the right words to describe it before, but this seems to be the best way to describe it--------Like tendens and ligaments pulling and tearing-----along with a scraping sound. Maybe if I keep my head still I can at least get some relief with the headaches. As soon as I put my collar on my hasband said I was already speaking more clearly. I wasn't slurring as much as I normally do when I'm having more severe pain and OI issues.

I'm still getting the intermittant throbbing at the middle base of my skull, and it sometimes feels like a knife is being stuck in one ear and coming out the other on and off. Always with movement of my neck, or stressing my body too much.

We both praying nothing more acute is going on. Please keep me in your prayers. We still have to find out what is causing this fluid buildup in the mastoid area. I heard vascular congestion can cause this---------------AND it can also cause strokes.

Maxine :0)

[mjan]

OMG...HUGS to you and yours my dear Maxine!!!!

Your dang PCP...what a doof!! OF course he does not know what to do..but still.. where's the so called bedside manner.

I know you are so scared.. worried. Easy for any of us to tell you what to do. All I know is that YOU deserve a miracle

How involved will your new neurologist be? I mean could he be called when you have an ER visit or a crisis question?

I hear how scared and worried you are..but dang..what a GREAT grandma you are to care so much about those little ones!!!

PRAYERS...BELIEF.. there IS an answer out there for you...And I hope your brother takes your concerns about his son seriously.

Warmly Jan