S C R E A M

[hhkos]

I am so f------ sick of being in pain and so f------ sick of not getting a real diagnosis after a year and 5 months!!!!!!
I am so f------ sick of rude, insensitive doctors, so sick of each doctor contradicting the last one, so so sick of all this crap that I am about to lose it BIGTIME.
I am too pissed off & fed up right now to go into medical detail, although I know that folks on these forums can sometimes give helpful, pertinent advice. So for now, I am just going to SCREAM.

[Screaming isn't all I do; I've been constructively doing all I can to get to the bottom of this. But I am so past frustrated (and beginning to get scared) that I can not begin to explain...]

Thank you for letting me vent.

[LIZARD]

Do you feel better now? ;) What types of symptoms do you have? What tests have been done?

I know what you mean about some doctors. Been there, done that myself :rolleyes:, but it may be that you're just going to the wrong ones. (Meaning the wrong specialists, not just the wrong doctor in the sense of specific people.) I found out the hard way at 20 yo that, even though I have epilepsy, and most people would see a neurologist for epilepsy, I couldn't expect one to know anything about the reason for it: hydrocephalus. That was the job of a neurosurgeon--and as I would also find out, not just any nsg. Even certain specialty docs have sub-specialties, so you may have to search for some time to find the right one.

Whatever the case, good luck to you.


LIZARD :)

[hhkos]

Thanks for responding, Lizard.

I just wrote a long reply, detailing what my med. condition is, and then I was told to log in again! Arrgghh!!!
Anyway, I have low left butt pain which is getting worse. Been to many docs, many tests - It's not my lower back, not piriformis syndrome, not my hip, etc etc. I've had so many tests & treatments I can't begin to describe, & the pain has been getting worse and worse. (I had C-Spine surgery in 2000, so I thought it might be more spine problems referring pain to the left butt, but it's not.)
I'm getting a 4 hour test Tues. to completely rule out the spine.
(There is also bursitis and tendonitis at the ischial tuberosity; the point where the tendon attaches at the butt, but after months & months of Physical Therapy, relative rest, ice and heat, still no improvement.)

I was extremely active until a year ago, and this adjustment has been hard to take. -From what I read, you've had your own medica saga(s), so I'm sorry if I'm whining.

I'm getting a test for AS soon, and may chicken out and not take it. (Even though women don't ususally get it, I was advised to get it...)

I am so tired of doctors (& medical bills!)

Sorry to be whining -

- Hilary

[LIZARD]

((((((((((Hilary)))))))))))).

What does your spine doc say about it, exactly? Could s/he refer you to someone else about it? Have you had an MRI on it yet? If not, you might start with that.

Don't worry about me; I have a lot of practice with all of it, especially my issues (40 years' worth! :) ). My latest thing is helping my best friend with her little guy's (6 mo next week) Infantile Spasms. It helps me keep from drowning in self-pity on my worst days.

Hang in, hon'. I know it's tough when you feel so bad and can't get any answers or relief. :(

(((((((((((((((HUGS))))))))))))))),

LIZARD :)

[ainee]

G'day, Seeing you had back surgery, it could have affected your spinal muscles and nerves, to cause the symptoms now. I had back arching in 1997 - 2 years after spinal and head injury. I had a lot of strange ongoing symptoms, I didn't worry too much about them until 2001, when I began having horrific spasms, cramps, mini seizures and a whole lot more neurological symptoms. An osteopath said that my back muscles were "all knotted up". This affected my whole nervous system.

Many tests couldn't find what was wrong - so nerve and muscle damage may not show up on xrays and MRI's. I believe "knotted up back muscles" could be the reason for a lot of illnesses and conditions where a cause isn't found. And by reading these health forums - there are a lot of people who can't find an answer. I believe undetected traumertised spinal nerves and muscles could be the reason for a lot of unexplained babies and children's neurological conditions and many more later on in adults.
It could be worthwhile going to an osteopath to see if your spinal muscles are all knotted up. I've posted on a few threads - including Spinal Disorders - Back arching ,Spasms in spine - by ainee. It explains my thoughts on spinal disorders. Hope it helps.
Have a nice day
ainee.

[pab]

1) any "insult" to the spinal cord, can produce symptoms below that point ..
less likely than over its "own" dermatome or myotome...but possible

2) please make sure all GYN possibilities are ruled out...

3) an osteopath or chiro certainly may help, at least for another opinion

good luck

[The Dude]

I will pray for you Hilary that the pain subsides!!!!!!

God bless you......Peace and love :)

[clouds z]

told to log i again? if you hit the backswicth and copy and pasted it to a email or wordpad you coulhave saved it

[Boopers]

Hi Hilary,
Just wanted to say how sorry I am that you are in so much pain and so frustrated. I hope you get a diagnosis soon.
Linda

[khamcam]

{{{hhcos}}}

I'm sorry you are in such pain and having such frustrations with your docs. I don't know a lot about what may be causing your pain, but I do know that a number of friends have had good luck with some pain management therapy. They have also had success with accupuncture in reducing the level of pain. I know it's not the complete answer to your pain, but it might help in the meantime until you get a definitive dx.

I wish for you a release from your stress/tension/anxiety/pain.....don't forget to breathe ;) Good luck dear!

[Tootsie]

Is this sciatic pain? Have you had anything like a cortisone injection into the area with bursitis? Cheerio.

[hhkos]

Tootsie,

Yes, I did have cortisone (and other types) injections into the bursa site(s) and they didn't work.
It's not classic sciatic pain in that it doesn't go further down than my butt.

And thanx for yr suggestion of writing to the surgeon. I know that the reason he now doesn't want to do surgery is because he thinks I got no pain relief at all from the selective nerve block (and that is mostly true, but I did get some delayed relief, and then the pain returned. He needs to know that.)

--Thanx again,
Hilary

(I hope you're enjoying (or enduring) the holidays) :)

[Tootsie]

Hi Hilary,
My holiday celebration is always Christmas Eve so today is very quiet. I have new books to read, left over food to eat, and will make a few long distance phone calls when I finish this. Thank you for your holiday wishes.

When you write to that surgeon, be sure to include something to the effect that he has your permission to discuss your symptoms, diagnosis and treatment with other professionals that may have suggestions or recommendations for further care. This tells him that you are willing to work with him and/or others to resolve your symptoms.

Cortisone injections are so helpful for most people but I, too, am one of those, for whom it does nothing but increase the pain and discomfort. On that issue, I have no other words than Bah! Humbug! Cheerio.

[hhkos]

Hi, Tootsie
I hope you enjoyed your books, food and phone calls.
I did write to the surgeon, and he still feels that surgery won't help me because my pain relief from the selective nerve block wasn't at all consistent enough, and because the mylo/lumbar/CT wasn't telling enough either.
I'm not upset though, because I'm going to a neurologist in a few days, and after all this, I'm thinking/feeling that the pain is not coming from my lower back afterall. (A second surgeon has also looked at my films and feels it's not the lower back.) The pain now feels like it's very high up in the tendon, right below the butt, but not moving downward.
(I would love something more clear cut; there's no black and white here; too much grey -but I AM going to find out what it is.)
I hope you're doing well. Happy New Year to you!
- Hilary

[Tootsie]

Hang in there Hilary and keep asking questions and exploring options with the doctors. Most doctors are intrigued by diagnostic challenges and will work with you as long as necessary. Every once in a while you can run into a sour apple but I think that eventually your problems will be solved. I know how frustrating and annoying it all can be. Patience in NOT one of my virtues, either! Cheerio.