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Margaret

Gareth's pain

16 posts in this topic

Hi Everyone,

 

As you all know, Gareth doesn't relate pain too well and it's always a guessing game as to what is wrong. For almost a year now, he's had a severe ticing/facial distortion/arm in the air behavior. He will tell me *hurts*....legs, neck, arms, etc. I finally went to the primary care physician and asked for a neck X-ray to rule out Atlantoaxial instability, which is something that can occur in kids with Down Syndrome.

 

Gareth's has always been negative, but his neck pain was getting progressively worse and I refused to accept the *knot in the muscle* line from the doctors any longer.

 

Turns out, he has no disk left between the C5 - C6 area of his spine and he has *bone on bone* beginning to fuse. Doctor said any *normal* person would be in excruciating pain a lot of the time, depending on how they moved their neck.

 

So now we're getting referrals for a neurosurgeon and I feel angry at myself for not pushing harder to find an answer for his pain. He's got so many specialists and they look at me like I have Munchausen syndrome!

 

Thanks for listening. I'm not even sure if this is connective tissue related or something completely new.

 

Take care, Everyone,

 

Margaret

Mom to Gareth, 27 years old, DS/ASD

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Hi Margaret,

Poor Gareth; I am sorry to hear about his neck problem. No wonder he said it *hurt*; it must be excruciating!! :sorry:

It's a good job that you followed your instinct and pursued his doctor; it's all too easy for his specialists to dismiss the symptoms as something minor (they're not in pain the whole time! :wink:) I do hope that the neurosurgeon will be able to help him and suggest something to irradicate the pain.

Here's a few special hugs for him. :hug-bear: :hug-bear: :hug-bear:


Jo Frowde

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Margaret, ever thought about what Gareth's life would be like but for the countless interventions you've already instigated? No, don't because it doesn't bare thinking about it's that bleak a prospect.

 

You can't know everything. Every parent misses something. My sister put her 10year old son to bed with a broken arm, my youngest stepson came home and went to bed, we thought he was hungover, he'd had too much sun. The list is endless.

 

You should be mad at the doctors not yourself. They actually know better!

 

Now you know what's what Gareth can have the pain addressed and what a trooper he is! Super-Gareth for sure!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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Hi, Margaret,

 

Awe this breaks my heart. I'm so sorry he's in so much pain, and I feel for you that you're beating yourself up about it. DON'T. I know you are the best mom and you are giving it your all. I'm happy some action is being taken at this point.

 

Keep us posted and hang in there my girl. 


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Margaret,

 

I am just heartbroken that Gareth has been suffering so much, so long, and that your reports have fallen on deaf ears, until now.  I just wish I could give you both a great big -- but very gentle -- hug!  I hope that something can be done to either fix this issue or assuage his pain.

 

I'm sure that any improvement at all will be a welcome relief for Gareth. Please let us know how everything progresses with this.

 

:hug-bear: :hug-bear:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Pain is a difficult thing to deal with on any level, let alone being unable to describe it and the location. I hope Gareth is doing better and great for you for pursuing this.

 

I have a mentally disabled, non-verbal sister-in-law who lives in a group home. Several years ago after suffering severe pain and being unable to walk she had her hip replaced. The doctor said, with the condition of her hip, another person would have been totally incapacitated! Last year, after acting like the other leg hurt, the group home took her to a doctor who wanted to do experimental surgery on her knee. Her sister and guardian pursued it and insisted that she see the first doctor and have him look at her hip. Sure enough, it was the hip and not the knee and she has now had that one replaced and is doing better. If the issue hadn't been pursued relentlessly, she would have had to go though an unnecessary surgery.

 

Everyone should have a person who advocates for them like you do for Gareth. Please let us know how he progressing.

 

miocean


ISN Artist

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In spirit I am wrapping my arm around Gareth to give him a big hug.

 

Check out my xray in my photos entitled "As the sewing machine hums" I just recently had c5-c6 fused and I also have other pain, but the doctor would only say "from my neck"; i said "No from everywhere" she was straightened out on that after I was positive for Scleroderma.

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Hi Everyone,

 

You all are a fantastic group of loving and supportive people.  I sincerely thank you all for that! 

 

Miocean, Gareth has 5 pins in his right hip, too.  He had his hip put back together at age 15.  Like your sister-in-law, the doctor said that if it was a *normal* person, they would have been wheelchair bound, in severe pain. He had no socket left to hold the head of the femur in place.  As a toddler/young kid, he would sit on the couch and pop his femur in and out, while watching TV.  Use to drive me nuts listening to it!!  His only complaint was that his knee hurt....to the point that he couldn't walk far.  Doctor told us the nerve that goes on the outside of the femur was affected/inflamed from the bad hip; it runs to the knee, thus causing people to think it's a bum knee.

 

Quiltfairy, thank you for the photo.  You've given me more questions!  It looks like they went in from your throat, not the back of the neck?  What sort of pain were you in from the neck vertebrae or does all your pain *run together* ?  Was there noticeable relief from the surgery?  My primary care physician said they will probably go with stronger pain meds, and then,  physical therapy, before jumping into surgery.  You said they fused your C5-C6.  Gareth's is already starting to fuse together because it's bone on bone.  I'm wondering what would the difference be between your fusion and his body fusing them?  Maybe there will be relief for him if nothing is done, allowing his body to heal?  Lots of questions, but will have to wait till we see the neurosurgeon on August 24th.  You can email me privately if you want to explain more.

 

Once again, thanks.  I'm so glad that I now know he's justifiable when he's ticcing/moaning/twitching.  It's not all the time he's in pain, but when he starts, I have him lie down on a heating pad and it seems to offer relief. He takes Etodolac morning and evenings for pain, and Extra strength Tylenol around lunch time. 

 

Take care, Everyone.     :thank-you: :thank-you:

Margaret

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Hi Margaret,

 

Please keep in mind I'm not a doctor and I am even in need of a CPR refresher course. So just indulge me for my blathering on, and get real answers from Gareth's doctors.

 

As I understand it, there really is such a thing as natural bone fusion, which means just letting the body gradually heal it on its own. The problem is, it can take a long time (a year or two?) to occur. The flip side of that is that surgery can be difficult, complications perhaps likely given Gareth's health, and recovery can take a long time, too.

 

Since it's such a delicate thing to decide, if it were me, and I was you, and if there was any question of surgery, I'd probably get two opinions on the matter, no matter what the first doctor recommends.

 

For the second opinion, I'd make it the very best spinal surgeon you can possibly locate given the restraints of Gareth's insurance. Then, bear in mind that a surgeon can sometimes see their job as recruiting for business and thus be more in favor of surgery than the average doctor. So if by chance they recommend against it for any reason, take that advice very seriously indeed.

 

Also, I don't know if everyone automatically naturally heals, or if the situation only gets worse depending on the cause. Under even the best of circumstances, it's very difficult with chronic illness, to figure out what to treat, and what to leave well enough alone, and I'm sure it's all the more challenging given Gareth's overall health predicaments.

 

Please give him an extra hug, just from me.

 

:hug-bear: :hug-bear:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I sent you a private message about the pain meds I am on.

 

Yes, my neck did hurt after the first surgery which they put in a metal  disk. I wound up with this second surgery and I wish I had had it the first time. It took about three months to heal, but the pain in my neck is much better. I did lose a little movement, but not much and my neck pain is much better. I just wish they could take away the rest of the pain.

 

The only real problem is in the winter; I have to wear a good neck scarf as if the metal in my neck gets too cold it hurts and yes, they did go in from the front. My surgeon was really good; he put the scar right where there are natural folds in the skin and you would never know it happened unless you knew it.

 

I hope this answers some of your questions.

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I had neck surgery and actually had 3 discs removed and titanium cages put in place to fuse the vertebrae together along with spinal cord and nerve decompression (all done through the front of my neck - supposed to be less painful than than going in through the rear), it certainly helped with my pain and it took initially 6 weeks recovery and then a further 8 weeks to recover fully. I did do physio to to strengthen my neck and have hardly any loss of movement.

 

But since Gareth has so many health issues and cannot really explain his pain do ask lots of questions about the surgery for him. You are an excellent mum who is so caring and Gareth is very lucky to have you fighting for him.

 

Buttons

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Good morning, everyone.

 

On Monday, Gareth met with the neurosurgeon, who reviewed his neck X-rays from 3 years ago and said he has degenerative arthritis in his C5-C6.  There were no changes 3 years ago, so the disk degeneration and partial bone fusion has happened since then.

 

He said that due to Gareth's lack of communication abilities, that it has definitely progressed farther than most people would accept, pain wise. He's got an MRI scheduled for this coming Monday to see if the spinal cord is impinged upon.  If the cord is involved, then surgery is the next step.  If not, it's pain medications, physical therapy, etc.  I will keep all of you posted.

 

Thanks so much for the useful information. It's so much appreciated.

 

Take care, Everyone.

 

Margaret

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Hi Margaret,

 

Well, at least you have seen the neurosurgeon now and have a way forwards,

 

I do hope that the results of Gareth's MRI mean that his spinal cord is not damaged and he won't need to undergo surgery. Hopefully his specialist will be able to help him with pain medications and physical therapy.

 

I've got everything crossed for Gareth and I'm hoping that he will soon be feeling much better.

 

:hug-group:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Margaret,

 

I'm glad you are finally starting to get some real answers regarding Gareth's neck pain. I'm hoping that he won't need surgery, but physical therapy and such isn't any walk in the park, either.

 

I like to plan something fun to do after every doctor's appointment, so I can look past the appointment, by looking forward to the fun. So what sort of fun does Gareth get after his MRI?  Like, does he get to pick the coffee shop to go to, or a special show to watch?  Yes, I do realize that with this plan, nearly every day would be Gareth Day...but I'm sure he won't object to the idea, will he?

 

Keep us posted as things develop, of course.

 

:hug-bear: :hug-bear: :hug-bear:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I'm so glad they have found the reason for Gareth's pain. I hope they can move forward now with a plan that will help him in the future.

 

:hug-bear:  :hug-bear:  :hug-bear:  for Gareth!

 

miocean


ISN Artist

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Hi Shelley.....too funny!!!  Today, he had his teeth cleaned and promptly reported that *Chicken wrap good now*.....meaning he wanted to go to Mc D's and get their large chicken/ranch wrap sandwich.  His favorites restaurants are Applebee's and Garfield's.  Any restaurant will do, though, as long as it's a *real* restaurant....not McD's, Wendy's, BKing, etc!!!  Nothing wrong with his taste buds!!!   :lol: :lol:

 

Take care, Everyone.

Margaret

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