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New Member

Date Joined Jun 2012
Total Posts : 9
   Posted 6/25/2012 1:43 PM (GMT -6)   

JFYI... Every time you pop that sub-arachnoid space it just makes your back worse. (Epidurals/Nerve Blocks)

I'm going to try to keep this as concise as possible but I truly believe details are needed sometimes in order to help... I NEED HELP!!!

I was in a really bad car accident in 1998...I started having balance issues, headaches that can only be described as being forced to hang upside down constantly and significant loss of vision. I dismissed the balance and eyesight as just being clumsy and the eyesight as genetic. The headaches and the intense pain I began to suffer with...well there was just no dismissing them. I saw ELEVEN doctors who just kept promising pain relief with epidurals...I just felt worse but I kept going. Rheumatologists, Physical Therapists, Orthopedists you name them I saw them...they passed me around like rolls at Sunday dinner.
At a routine eye exam my eye doctor flipped out because he saw papiedema around my optic nerve and thought it was a brain we flew to Memphis to meet with a very rude neurologist...who had me in tears within the first five minutes...not because I had a brain tumor...because he was downright MEAN!
He suspected a condition called Pseudotumorcerebri...your brain stops regulating the pressure or the amount of fluid your brain is floating in. He performed a spinal tap right there in the exam opening pressure was 582....normal folks run between 60-110.

Everything changed that day in 1999. I acquired a NEW neurologist, neuro-ophthalmologist, neurosurgeon, neuro-ophthalmic surgeon and an Annapolis graduate military GP. Notice there is no pain specialist listed... Well I diligently tried. After the PTC diagnosis I had 54 spinal taps to lower the spinal pressure until I had a Ventricular Peritoneal shunt placement in 2008. I had two VAD implants as well as an optic nerve fennestration in which they take your eyeball out clip the nerve and put it back in. I have DONE everything the Drs have asked of me..every pill, no matter how sick it made me, every surgery...the only meds I cannot take are ie. Celebrex,Advil,Ultram ect.. I vomit blood from those.

My headaches can only be described as if someone held you at gunpoint forcing you to hang upside down. After all the spinal punctures my back is forever ruined..their words not mine. Pain scale of 8-9 in lower back, hips and thigh muscles. I have significantly diminished vision, zero depth perception, altered balance...therefore I fall quite frequently.
Diagnosed dysthymia more accurately Major Depressive Disorder. Severe panic and social anxiety from PTSD after being drugged and raped.
I attempted to go to our local Pain Management Clinic. I brought every CT,MRI, X-ray and my full chart so that whomever I saw would know that, I had followed every Dr.s instruction to the letter. When the DO walked in(I swear he didn't look old enough to shave) he glanced at my chart, and said you are not a candidate to help as your Dr.s have recommended against the use of epidural injections and he walked out. I started crying and could not stop...I was so tired of hurting. I haven't driven in years so my 62 year old Mama drove me to my GP where he took me in his office and I said I just couldn't do it anymore. I never in 12 years asked him for pain meds but I had given up. So he prescribed Nucynta.

These are my meds:
Prevacid 80mg for esophageal ulcers
Zonegran 200mg for migraines
Skull and Neck injections of Botox every three months for migraines
Prozac 40mg SSRI
Wellbutrin 150mg SSRI
Zanaflex 20mg for muscle spasms
Estradiol injection once monthly HRT
Phenergan 50mg prn
Xanax 3mg daily
Lyrica 600 mg daily
Ambien 10mg @ bedtime
Nucynta 75mg 1 tab up to 4 times a day

Two things have happened in the last month that are really scaring me.
One... My GP of 12 years had an incredible opportunity for his youngest daughter to attend the Univ of Georgia and he couldn't turn it he's gone. Now I have NO ONE who really KNOWS me and that I trust with supervising my meds.
Two... The Nucynta has stopped being as effective as it was when we first started it almost two years ago. I'm terrified to ask this new Dr.because I don't KNOW him at all...and I definately don't want to be LABLED DRUG SEEKING!!

If anyone has ANY suggestions PLEASE PLEASE reply.
I BELIEVE with all my heart that GOD did not put us on this earth to be miserable.

Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 6/25/2012 8:23 PM (GMT -6)   
Welcome here, I must say, your story is a hard one to read. I can feel the intensity of your pain and suffering through your very words. I am so sorry you have had to endure all that you have. I understand how you feel about losing the doctor that you have had a good long relationship. I feel the same way about my current medical team. I have had the same GP for nearly 17 years, he really knows how I tick. I have had the same surgeon do the last 8 surgeries on me, he is also my urologist of some 5 years, again, he knows me inside and out. And I have a great oncologist who is also my pain manager, and he is very sympathetic to someone like me suffering from chronic cancer pain. I am dealing with advanced prostate cancer that can't be stopped, and was left disabled due to faulty radiation treatments 2 1/2 years agon.

You need to find a new, and hopefully equally good doctor as soon as possible. With your extensive medical history, you should have good records to transfer.

I wish you the best, and as I tell myself, and all others (especially the other men in the Prostate Cancer community), is to never, ever give up hope.

It rains on the just and the unjust, never feel picked on or persecuted for what you are living with. All things are for a purpose, even when we don't see the reasons or answers in this world. Stay in touch, HW is a great place for support, for advice, to vent, whatever you need.

David in S.C.
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

New Member

Date Joined Jun 2012
Total Posts : 9
   Posted 6/25/2012 11:42 PM (GMT -6)   
I will remember you in my prayers. I will pray for your healing peace. Thank you for you kind words of comfort:)

Veteran Member

Date Joined Nov 2008
Total Posts : 6005
   Posted 6/26/2012 1:05 AM (GMT -6)   
If only I did have some advice for you, but it sounds like you have a good idea of what you you just need to find someone to give you a small break and help you! I agree, your story is a very hard one to read.

All I can give you is my wish for a good doctor, one who listens. You will find lots of support here, because people understand.

Moderator, Fibromyalgia Forum

Fibromyalgia, herniated disc L4-5, (recent discectomy), extensive spinal deterioration, Hashimoto's, IBS, migraines, tachycardia, hearing loss, (probably Menieres) chemical sensitivities
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