How Do We Cope With The Pain

Ok so we manage to get over the Xmas while Natalie is still taking the Warfarin to thin her blood, and still trying different medications to help with the constant pain of the RSD. We still have lots of Hospital appointments which eat into my paid time off work, and its costing us a fortune in bus fares and Taxi to and from Hospital.
Its been six months and lots & lots of Blood tests have been taken to check her INR so that she could take the correct amount of medication to keep her blood at the correct level, and now finaly an appointment with a Pain Clinic has been arranged, only its for an adult pain clinic.....she has only just turned fifteen.

So after one visit to the Pain Clinic the doctor agreed that she does have RSD and should be seen by a another pain doctor but this time at the childrens hospital, he would write to them and an appointment would be sent.
At long last we visit the pain clinic doctor at the childrens hospital and she seems very nice, she also undersatnds about the problem with RSD after speaking to Natalie and getting some of her history together, we try different types of Medication and also things like Physio and the use of a Tens Machine, The Ten's worked well at first helping a little with the leg pain but gradually it had to be turned up higher and higher to have the same effect.
Some of the medication Natalie was given would have side effects and had to be stopped, Physio was not possible because there was so much pain in her foot and leg due to the RSD that in order for any kind of Physio to take place first the pain had to be under control, we just kept going round and round in circle's.

Then during one of our visits to the pain clinic we were told about another Doctor who worked in a childrens hospital in Glasgow, he specialised in something called a (Bilateral Sympathetic Block) this procedure was done while the patient was asleep.
The doctor would inject Anasthetic into the patients spine just like an Epidural and this would shut of the nerves for around 6-8 hours then when they came back on, the doctor said its a bit like re-booting your computer....the signals which were mixed up very often go back into normal mode.
Wow.....sounds too good to be true we thought, I mean how many mothers out there have had an Epidural while in Labour.....I had one when I had Natalie...No Problems I thought what could be better than helping the pain in her leg and getting it back to normal just by having a simple Epidural...and she would be asleep.
We were over the moon...we couldnt wait to see if this doctor in Glasgow would go ahead with this procedure....but only after waiting 3 weeks we have our first visit and assesment by him.
After talking to Natalie and myself and telling us about this great treatment... he said he would be willing to go ahead with it.....two weeks later we have an appointment for the operation and we are to stay in Yorkhill Childrens Hospital for Four days...this is because after the Epidural the children having this procedure have three days of intense physio when the nerves arent out of control.

I had read on the support group for the RSD that some of the children from that group spoke highly of this Doctor and the good work he did for RSD, as I flicked through some of the stories of parents who's children had been helped by this the more excited we became about having this done.

On the 9th of June 2003 Natalie was addmitted to Yorkhill Hospital for the Bilateral Sympathetic Block.

Now this is where the Rollercoaster goes way out of Control The most frightening ride of my life....

The Bilateral Sympathetic Block

Its the 9th June 2003 and this is the morning of the Sympathetic Block.

Although we are very Excited at the thought of Natalie having no more pain in her foot or leg, there is always a part of you that thinks the worst might happen and I think every parent of a child having surgery, no matter how Minor thinks (what if ?)
but you push it to the back of your mind knowing deep down your being stupid and everything will be fine.....I mean the Doctors are experts at what they do and these operations are done on a daily basis.
So off I went downstairs to the hospital shop to find something nice for her when she returned from Theatre.....I bought a nice card, and this lovely soft toy dog he was so cute, he almost looked like a real puppy...she will love it I thought.

I came back to her room worried that she might be back in the room before me but she wasnt so I sat there in this empty room and just for a second that worried feeling came over me again, but it went as quickly as it came.Then I heard the nurses say that Natalie was on her way back from Theatre, I couldnt wait for her to say that she couldnt feel any pain in her leg, the Doctor had told us that usually when a child comes back from Theatre and he asks about how their leg feels ....they usually dont know because the Anasthetic has made it feel kind of warm and pain free (the limb of someone with rsd is usually ice cold because of the condition although they do experience burning type pain)

Im sure you can imagine how confused and scared I was to see Natalie being brought into the ward trying to sit up in her bed which was being wheeled in to the side room we were staying in and she was also very upset and crying.
I could see her trying to grab hold of her leg...mostly her knee, and she kept saying it's sore' its hurting' I didn't understand what was happening I remember saying to the Nurse...' why is her leg hurting her, she shouldnt be feeling any pain? she has just had Anasthetic put into it? whats wrong with it?'

The nurse said 'dont worry she is just coming round from the Anasthetic give her time to wake up' 'we will se how she is in 10mins or so, then if she is still in pain I will page the Doctor'
I said to the nurse ' look she is fully awake and the tears are running down her face can you get the doctor and ask him whats wrong, I mean she isnt meant to feel her leg but she is rolling around in pain'

The Doctor popped in and look as puzzled as we were, the pain in her knee had calmed down a little because the nurse had given her some painkillers, but her leg was more painful now than before she had the procedure done.
All the Doctor could say was 'Im not sure why your in so much pain Natalie,Im wondering if it might be the nerves deeper inside your leg thats causing the problems and not the Sympathetic nerves?, however we will leave you to settle and I will come back in and see you before I go home'.

Natalie lay down and tried to get some sleep, I remember sitting there and thinking I hope we havent made things worse by having this Block done, I also remember feeling guilty for coming to the hospital and telling her the Epidural would be fine,
'nothing to it I said'. I felt really bad .....she was in so much pain, not only that but her hopes of being back to normal had just been crushed, and so had mine'.

The Rollercoaster is dropping very very fast now and Im getting more than a little bit scared.

What Can Be More Scary ??

Natalie didn't sleep very well that night and neither did I, she tossed and turned most of the night saying that she had a headache and that she felt sick I put the light on to get her a drink and it hurt her eyes so I quickly put it back off and went to get the nurse.
One of the nurses popped in and took her pulse, "fine she said".
and left the room, I gave Natalie a drink and told her to try and get some sleep.

I woke very early with the sound of Natalie rushing passed me to the toilet in our room she was kneeling down and being sick, she looked terrible I rang the buzzer for the nurse and one of them came and put Natalie back to bed,the nurse took her pulse and her blood pressure then she said "it's fine" I'll pop back and see you again soon handed her a sick bowl.
Can you shut the blinds I asked the nurse cause the light is hurting her eye's.
"Is it Natalie ?" she said. Doesn't that just make you so angry, when you tell somebody something and they then ask the person themselves as if your lying to them.
The nurse pulled down the blinds in such a manner that you knew she wasn't happy with what was happening, and left the room.

So here I am not knowing what is happening, holding onto a sick bowl and trying to reassure Natalie that things will be fine.....when really deep down inside I'm starting to get very scared.
A few minutes later I had to ring the buzzer again, Natalie was crying and saying that her head hurt a lot, she couldn't stop being sick and any movement made the headache and the sickness worse.
Two of the nurses came in and one of them went for a doctor who popped in asked what was wrong, he then told the nurse to put Nataile on a drip and give her something for the sickness and some Paracetamol....(the worlds cure for every illness)

Ok without boring everyone too much by going into the next few days that followed, Natalie was still being sick, still had the headache, she was still having fluids via the drip in her arm and still couldn't stand any lights or the blinds being opened because the pain hurt her eye's and head so much.

Two days had passed and we still didn't know know what was causing her to be so ill,
One of the doctors came to see us on the third day of Natalies illness and said, did Natalie's doctor tell you that he thinks he may have pierced a tiny hole in the Dura when he did the Block ? I just said yes, although he hadn't because we hadn't even seen him.
So this doctor explained that when Natalie's doctor inserted the Needle into her spine for the block he think's it had gone through a little more than it should have and made a tiny hole in the outer layer of the spinal cord known as the Dura Cuff.
This would have cause some fluid to leak out causing the symptoms Natalie was having, but that we shouldn't worry about it as the body is a great thing and usually in 24-48 hours the body will have healed the hole all by itself.

So because I didn't exactly know what he was talking about I trusted what he was saying, thinking Ok the body will heal this by itself.....this kind of thing must happen often no need to worry Natalie will soon start to get better.
The doctor that spoke to us suggested giving Natalie some caffeine Tablets which often help the body produce more fluid.....but because she kept being sick she was unable to keep the caffeine down.

Four days later and Natalie isn't getting any better all the same symptoms are there and now she seems to be getting worse.
They have started to give her strong painkiller's along with all the other medicine they are giving her ( Oxycodine, Oxycontin, Paracetamol, sickness tablets, Ibuprofin) so now all she wants to do is sleep but she can only do this for around 15-20mins max before waking to be sick again.

Looking back now I see how terrified she must have been, she was 15yrs old and Natalie was very mature for her age.....but there she was wanting to hold my hand, wanting me to move my bed close to hers to sleep at night, and she didn't want me to leave the room.....I don't know if I'm able to explain the guilt I feel now looking back and thinking I know your ill Natalie, but your not a baby you don't need my bed next to yours.....that was something I would probably do automatically had she been three or four or even 10yrs old.....but fifteen....I really didn't know just how ill she was at that time, and the guilt of that will be with me every day.
At that time when she was ill and things were getting worse instead of better I couldn't imagine anything more scary than not knowing what was wrong with your child, not getting any answers and not being able to do anything to help with the pain they were in.

Would this nightmare ever end ????

Its Starts to get very Scary

So the days turned into weeks alomost four weeks and Natalie was still the same,
she was still being sick she still had the headache, she couldnt eat and the light hurt her eyes. In the room we had to keep the curtains closed it felt like we never saw the daylight, the only time we saw anyone was when a nurse popped in to take her bloodpressure, or the cleaner came in to do the room, with a quick flick of her cloth and a quick sweep around the bed.Our family lived in Edinburgh and because the hospital was in Glasgow we only had a visit once at the weekend perhaps on a Saturday or a Sunday.One of the nurses that came to work on the nightshift used to make a joke about the fact that maybe she should wear Garlic around her neck....she would say "I swear you two are Vampires" she was the only nurse that would take her time to ask how Natalie really was.The room in which we stayed had a toilet and shower room attached, and a T.V it had a big glass window with curtains so that the nurses could see in and we could see the rest of the ward.One day the childrens ward had some clowns come around with the hospital Radio Staff to cheer the Children up.....they walked right past Natalies room and straight onto the ward I know Natalie was too big for Clowns but hey she was still a child, I went to the bathroom and cried, I felt like we had nobody we were left in the room on our own as if we were'nt really there, and the problem was..because the Doctors couldnt find what was wrong the nurses treated Natalie as if she were only pretending, they would shrug of any indication that she was in pain. One day late in the afternoon I asked for painkillers for Natalie she was in a lot of pain and crying....they nurse's on the ward that day told me they would be along shortly as the medication round would be starting soon.....two hours later I was still asking for painkillers I got every excuse from sorry the nurse doing the rounds didnt see Natalies chart....to the doctor hasn't written anything up yet we are waiting for him to call us back.....I just dont understand why someone in the medical proffession can treat a child that way ?
I remembered the Doctors did speak about doing a procedure called a ' blood patch' because they had suspected that it could be a spinal leak the doctor who had performed the Sympathetic Block on Natalie had told us that if She didnt get any better they would perform a 'Blood Patch'
The way this is done is by taking blood from Natalies arm and then injecting it into her spine the idea is that it clots and sticks like a sticking plaster to stop the fluid from leaking.
But when I asked if they could do the blood patch because she wasnt getting any better, I was told that the reason they hadn't tried the Blood Patch was because they thought that the tear was in the Dura which was on the outside lining of the spinal cord and that the Blood patch wouldnt work because it would be like putting a plaster in water ...it wouldnt stick.
Then I thought to myself when the doctor told us that and left the room ' why would he say that? what makes him think its on the outside unless he knows that he had made the hole there and was hoping that it would heal by itself ? This was when I started to make notes of everything that happened to Natalie and keep records of things that were said or done to her....this is when I started doing medical research.
But all of this didnt help my child who was in a great deal of pain.....and the worst was yet to come.

Yahoo! Groups : RSD-WorldNews

Yahoo! Groups : RSD-WorldNews