Living with Complex Regional Pain Syndrome.

Hello friends,I just want to talk to you a bit about what life is like living with this horrific disease.
Ariel has many medical issues as I'm sure you are all well aware.Seizures being a big part of her life since she was 12 yrs old.Her Neurologist said he believes she has Lennox Gastaut Syndrome.Almost daily she has one seizure or another it just depends on the severity.Some days it can be blanking out or jerks other times it's full blown Generalized Tonic Clonics or ones so severe she has to use her wheelchair.Then she has Gastroparesis so sometimes things are good and then other times her stomach is wreaking havoc.

On Dec 11th Ariel had a Grand Mal (Generalized Tonic Clonic ) in the bathroom and banged her arm on the tub causing her to get post traumatic fat necrosis.Her arm was so painful and just kept swelling and turning black and blue.Thankfully we found a good doctor to diagnose this after many visits to urgent care and just being blown off.That turned into CRPS.
Here is an explanation of what this is.
https://www.webmd.com/pain-management/guide/complex-regional-pain-syndrome#1 
It is one of the most painful syndromes there are.On the McGill pain scale it tops amputation,childbirth and cancer.
http://www.rsdhope.org/mcgill-pain-index---where-is-crps-pain-ranked.html
Unfortunately not only do a lot of people in the medical field not know about it,but also there isn't a lot you can do for it.Basic treatment is nerve blocks,physical therapy,spinal cord stimulators and Ketamine infusions.Some people have used essential oils and diet and that has helped them and we are not above looking into whatever we can to help Ariel.In fact the less invasive the better.

The more rare thing is she is one of the people who get burning lesions from her CRPS.She has a team of doctors treating her.This includes Sports Medicine,Physical and Rehabilitational Specialist and a Pain Management doctor.None of them have ever seen anything like it.I showed them articles and documentaries and mentioned people on my group that get them.The documentary below is of Kayla.She and her mom have helped me tremendously.The people on my group that get lesions all look very similar to Ariel's.At first one doctor said they were shingles after countless doctors and Dermatology it was determined these are indeed from her CRPS.Everywhere we went they took countless pictures.They tried putting her on Gabapentin for nerve pain and that was a bust too many side effects.She was in so much pain and every new lesion feels like she's being burned.We have become quite efficient in knowing what to use as far as creams and ointments how to wrap and what makes her feel a bit better.

And unfortunately CRPS spreads easily.She now has lesions on both arms and one leg.

 

Finally after a whole lot of nonsense they finally were able to get her nerve blocks scheduled.Unfortunately these are only a temporary fix.The goal is to calm the flare and pain down and to scramble the signals going to her brain.Ariel is pretty much put out for these due to her seizures.They didn't listen on the first one and she had several seizures while they were trying to do the procedure.Here is the description of them:
https://paindoctor.com/treatments/stellate-ganglion-block/

After the first one she felt really good.Not pain free,but tolerable.We were able to get out and do some things.The next one was 10 days away and then due to a scheduling error she had to wait 3 weeks for the next and got a whole lot more lesions and was just feeling miserable.

Most days were spent in bed feeling awful.A fellow CRPS warrior made this amazing cup for Ariel.Thank you Raechel.

As of now she's had a total of 6 nerve blocks.She will be getting her 7th next week.The time they are lasting is seeming less and less and we are really looking into essential oils and dietary changes hoping that will help.As of right now we are either at the doctor all the time or on the phone with them.It's so very frustrating.We did take time this past week after her 6th nerve block and went to the park and to downtown Poulsbo just to get out and have some fun.

Poor girl needed something to lift her spirits and those were pretty good days.Last night she was hurting a lot again.Please continue to pray for Ariel that we find something to help her.

Hopefully the last surgery for the princess for a while anyway.

Hello friends,
With all that has gone on with Ariel over the summer on the medical front we were so ready for a break.
With that said her VNS was dying and it has definitely helped her seizures.Her Neuro wanted it replaced ASAP.
We didn't need her seizures to get really out of control.
Yesterday Ariel was having a large number of meltdowns.For those that don't know she has sensory processing disorder and has a lot of issues with certain things like crowds, fabrics, certain textures things like that.
Since we were told to be at the hospital at 5am due to the need to have extra labs drawn  we decided to get a hotel since I live almost two hours away.

 We stayed at the Ramada in Tukwila.
It was not too bad the halls were a bit musty and the walls seemed a bit thin as we could hear everything going on in all the rooms around us,but it was in a safe location and the rooms were pretty nice.
Our plan was to check in then go to The Old Spaghetti Factory for dinner and maybe the fun center to play some games.

           One of our favorite restaurants.

 I was happily eating my Mizithra my absolute favorite at The Spaghetti Factory and if you have never had it you have to try it.
Ariel started looking really spacey and seizurey.
She started slurring her words or would just not answer and usually when that starts the seizures will get worse.When they get really bad we would be in full crisis mode.
I knew it was best for us to just leave.
The folks there were really nice and boxed up our food and we just went to the hotel.

  Here's a little summary of where the VNS goes what it does and what it looks like.

We got all checked in and everything was going really well.
I really liked the doctors and the nurses until the Anesthesiologist came in.
I did not care for her at all.

She right away was acting like this was just a nothing procedure like having a wart removed or something.
She was poopooing the need for stronger pain meds if needed even though we already discussed it.
We discussed the fact that Ariel has a lot of circumstances that make her need specialized care.
I do not like cookie cutter formulas for anyone having surgery.

I told them if you do not control her pain she will have seizures.
 she has Fibromyalgia and every time she has surgery her pain is through the roof.
She also was acting like it was stupid to get blood counts done on her.
Despite the fact that her counts have been really poor and she's had a bunch of issues with anemia and other things..

Even the Resident Anesthesiologist was rolling her eyes.
I was also pretty ticked off,because we came there an hour earlier that the whole reason of having blood counts done.

                        I.V. placed

Ariel was in surgery for two hours and then came out and was moaning in pain.
I was not happy they just didn't give her something quickly to control it.

     Ariel's new puppy and her piggy Gus.

After a short time of the pain she started having seizures.I was ticked!
They ended up having to give her Versed and Ativan.
Still wouldn't give her anything through her I.V. to control her pain.
We are home now and needless to stay I will never step foot in that hospital again.

There was a man at the pharmacy who's wife had just had surgery and he was picking up her pain meds and he was puzzled and they were like "Oh the doctor only gave her two days worth."
 He was not too happy.I don't blame him it's ridiculous!

I understand that substance abuse is a real problem,but Seattle policies are idiotic to me.
Hospitals won't control peoples pain after surgery,but yet they push for all these rooms downtown for junkies to shoot up.
Makes zero sense to me.
Those are the ones you should be trying to give help to and not enabling them.

Anyway the only reason we went there was because they were a few of the places that did the VNS.
Over here and at Overlake in Bellevue they were awesome at controlling her pain.
She's at home now hurting quite a bit and seems to be having a reaction to the iodine.
If she's still having issues I will let them know tomorrow.
At least it had enough life left in it the doctor was able to set it to the original settings so it's right back where it was and she got some new magnets to use on it too.So that's a definite help.
Thank you for the prayers and everyone that has put kind words and pictures on Ariel's page.
God bless,Linn