RE: Re: New Member but not new to pain

[Guest guest]

Disturbing to hear about your doctor. I have never heard of a doctor writing for

an MRI only after you have an epidural. Is it possible to see another doctor

just for the MRI script? I have had 12 epidural shots and a facet block. All

were only temporarily successful ( 1-3 weeks). If you have not seen significant

relief from your epidurals, there is no reason to repeat them. I hate to be so

forward, and forgive me for sticking my nose in, but I think you should consider

a different treatment plan and a new doctor if possible. My prayers to you. dk

To: Hugs-N-Pain

From: florabug@...

Date: Wed, 20 Jun 2012 23:36:49 +0000

Subject: Re: New Member but not new to pain

Hi Terry,

welcome to the group!! I totally understand, as i too have a Chiari

Malformation! Had the decompression 4 years ago because I had a cervical

syrinx. I still have terrible neck and shoulder spasms. I feel your pain!! On

the outside no one would guess all the pain inside. Very frustrating!

>

> Hello All -

>

> My name is Terry Lynne, I am originally from Alabama, but live in a suburb

> of Dallas Texas. I live with pain 24/7.

>

> After having 6 lower back surgeries, 3 of which I had while I was raising my

> sons, I found out that I was born with Chiari I Malformation and Retroflexed

> Odontoid (RO).

>

> So I went on to have two Posterior Fossa Craniectomomies within 6 months

> during 2008-09. The last one included shrinkage of the Cerebellar tonsils, a

> patch on my Dura and an extra large Titanium plate on the back of my skull

> to correct the mistakes of the 1st Surgery! Then I had a fusion done at C5-6

> to correct Kyphosis in my neck.

>

> These 3 surgeries brought out 2 " hidden " Illnesses:

> One a not so rare, but seldom diagnosed spinal cord Injury called Adhesive

> Arachnoiditis (AA for short) - (caused by Epidural Steroid injections,

> failed back surgeries and other invasive procedures that we often turn to

> for relieving our pain!) It causes the nerves inside the spinal cord to

> adhere to one another with scar tissue. The surgeries caused mine to go to

> Stage 3 where the nerves are plastered to the Walls. Some Doctors won't

> diagnose this due to it being caused by doctors, sometimes themselves! -

> Others do not know what it is so they can look right at it and misdiagnose

> it! I was misdiagnosed for 12+ years!

>

> I also found (due to these surgeries) that I was born with a rare form of

> Ehlers-danlos (EDS), not the bendy kind, but one that destroys the collagen

> internally and in my joints. The only Hyper-mobility I have is in my

> pinkies, toes, hips and neck! Some people, like the gymnasts, bend

> everywhere.

>

> So - I am left with chronic severe 24/7 pain, generating from my spinal

> cord, and instability throughout my body - while I " look " healthy. My

> current Pain Management Dr doesn't believe in AA, because he gives Epidural

> steroid shots for pain!! In fact he said that I cannot have the MRI's that I

> am supposed to have to watch the progression of Chiari and AA, unless I

> agreed to have the shots!! When they are what caused my AA.

>

> Due to the Pain and Neuro deficits of the Chiari, RO, AA and EDS - I am

> housebound. Learning I have these Illnesses made a lot of things make sense

> throughout my life! I have managed to find peace with all this. Half my

> family looks at my outsides and cannot understand. I have lost the few

> friends that I did have here. But my husband totally understands. And that

> is all that matters. I have a very strong faith in God.

>

> Sorry this is so long - I figured I would try to get it all out there!

>

> Hugs!

> Terry Lynne

>

>

>

>