Re: MRI results- help please - Evelyn

[Guest guest]

Yes, I agree. -- I am one of the ones in this group who manage on very

little pain meds -- but that is partly because I have changed my life (and

partly because I am one of the lucky ones). I am currently not working and do

have to limit my activities. But with that said, I am able to swim several

times a week, go for short walks, go to pilates and do a little around the

house. This weekend I was so proud of myself for prunning my hedge -- but I did

it for say 20 min -- again the next day and again the middle of the week. I am

2/3 the way there (it's a big hedge). I have learned to pace myself -- no more

pruning the whole hedge all in one day!

If I can get my headaches and other wierd symptoms under control I would be at

the place where I could likely manage a pt desk job with my back as I am pretty

good sitting now as long as I'm in the right chair.

Dee

> To: tetheredspinalcord

> From: jlbobin@...

> Date: Fri, 11 Mar 2011 00:54:35 -0500

> Subject: Re: MRI results- help please

>

>

>

> I probably would have gotten that explanation if I saw a pedi neurosurgeon.

> My first surgery was done by an adult neurosurg. I know he is a very

> talented surgeon. My tether was bad and I did come out of the initial

> surgery w/o any neurological changes. He removed a brain tumor from a close

> friend that Emory had deemed " inoperable. " and she came out w/o any neuro

> changes as well. I think what caused the big problem with the surgery is

> that he used bovine pericardium as a dural graft. My body attacked it with

> scar tissue - it thought it was a foreign substance and that's the body's

> natural defense mechanism to protect itself - try an encase " foreign "

> invaders in scar tissue. It also caused me to develop arachnoiditis. I

> haven't developed scar tissue since any of my other surgeries. There is no

> way he could have predicted that. However -

> - he never even mentioned that retethering was a possibility. He even denied

> I was retethered when I clearly was

> - he never told me that he would have to use a dural graft and never told my

> parents mid surgery that he was going to (not that they would have told him

> not to do it)

> - the only thing that could have changed the outcome is if I had seen a pedi

> neurosurgeon that knew that pain alone was not a reason to do an untethering

> in an adult. Then I never would have had the first, no dural graft, no scar

> tissue, no arachnoiditis, no retethering, no second surgery, no syrinx, no

> third surgery and ultimately no paralysis.

>

> From the sound of it, you are at the point that you need to start tying to

> make some lifestyle changes. It doesn't sound like you are able to keep up

> with what you had been doing and the way your job is situated. If your job

> is not willing to work with you and restructure you job, then you need to

> have Dr. Frim refer you to your states VR. They will basically work with

> your employer to help them change your job. they will sometimes pay for

> office mods. They will do a better job of reminding your employer that

> under ADA, they have to change your job for you so long as it doesn't alter

> the essential job itself. Sometimes employers need to hear it from a

> government agency.

>

> I know how hard it is to admit to yourself that you can no longer keep up

> with the lifestyle you are accumstomed to. I used to work 3 very physical

> jobs and go to school and volunteer. The hardest thing to admit is that you

> are not safe to drive an give up driving. I didn't know about hand controls

> before my 3rd surgery. It was to the point i was manually lifting my leg

> between the gas as and the brake. Ultimately, I had to admit that it wasn't

> even safe for me to try and leave the neighborhood. THAT is hard to admit.

> That is when I got VERY depressed. A few months before I decided to go ahead

> with my second surgery, I had to admit that I couldn't keep working. I went

> back to school to get my second master's degree because I knew that I

> wouldnt' be able to keep doing my job forever and it was getting to hard on

> me. Granted, I figured I would return to it after the second surgery part

> time and full time when I graduated until I couldn't do it anymore (and then

> I would have that master's degree to fall back on), but it all happened a

> lot faster than I anticipated.

>

> But, it sounds like you need to make some hard choices. Housekeeper? Got

> to PT work? Cut out something else so you can work FT? I don't know. Its a

> matter of finding that balance that keeps your pain at a manageable level.

> Believe me, I understand how difficult those decisions are.

>

> Jenn

>

> On Fri, Mar 11, 2011 at 12:29 AM, Dybowski wrote:

>

> >

> >

> > , I define pain the same way you do. Right now I am barely able to

> > make it through the work day. I am waiting to be fired. In all honesty I am

> > giving it a month or 2 and then they can change my job or I'm gone. I can't

> > sit still for more than 5 min, dreading my trip to Texas for work!

> >

> > Jenn, I'm so sorry no one told you that. Dr. Frim explained to my husband

> > and I that the pain is a non issue to him in my case. my bladder was showing

> > signs of nerve damage. Since I have pelvic issues and the catheter is

> > unbearable for me I could not take the risk of using it. Thank you for

> > sharing like you both do!

> >

> > From my understanding there are a lot of different pain scales, I use one

> > on the pelvic flood/pudendal neuralgia page. It takes the levels and breaks

> > them down into feelings or mobility/life issues.

> >

> > I think I could be utilizing my pain man place more. They offer more

> > intense programs. I was so bad today I sent out 2 emails and made 3 phone

> > calls- and I'm in sales. I was actually looking for an inpatient program,

> > because I don't know how much longer I can deal.

> > And that's the honest truth.

> >

> >

> >

> >

> >

> >

> > >,

> > >

> > >Very well put. It helps now that the medical community has put actual

> > >descriptions to the 1-10 pain scale. And I totally know what you mean when

> > >you say that your definition of a " 10 " keeps getting redefined.

> > >

> > >I wish I had known before my first surgery that pain alone was not a good

> > >reason to have surgery. But, I joined when I was recovering from my first

> > >surgery. But I thought I was in a lot of pain. Working was getting

> > >difficult. But I also had not started chronic pain management. But I went

> > >ahead and did the surgery and 4 months later I was in the same boat as

> > >before surgery and the pain just continued to get worse.

> > >

> > >Fast forward to surgery #2. I was on chronic pain mgmt by this time. But

> > >working was even more difficult and I LOVED my job (still the only thing I

> > >miss about walking). But, I was still working and could with the meds.

> > But,

> > >I just didn't want to continue with the pain getting worse. I was worse

> > than

> > >before my first surgery and I knew i was retethered. So, even though my

> > pain

> > >was being managed medically, I went ahead with surgery #2 - thinking the

> > >pain would decrease. I wanted to keep my activity the same - keep working

> > 3

> > >jobs and going to school, etc.

> > >

> > >Surgery 2 caused me to lose function in one leg. First surgery that caused

> > >me to lose function. And it didn't do anything for my pain. I was able to

> > >get the function back, but I ended up developing hydrosyringomyelia

> > >(basically a syrinx - and that is mentioned in that article/commentary

> > that

> > >someone posted) and I was in more pain than I could imagine. I had NO

> > >quality of life. I couldn't safely drive. I could barely walk even with

> > >bilateral AFOs and forearm crutches. I couldn't do anything around the

> > >house.

> > >

> > >Surgery 3 actually did alleviate a lot of the pain, but it also left me

> > >paralyzed at T12. Not that it ended my life, but it did end my career.

> > >Granted, I ended up a lot happier than when I was stuck at home and in all

> > >that pain. Not that my pain is gone -I still rely on chronic pain mgmt. I

> > >could have done that from the start and avoided all the surgeries and

> > >function loss.

> > >

> > >The important thing to note is that this discussion about surgery pertains

> > >to when pain is the only symptom. If someone is having progressive

> > >neurological decline (not things that haven't worked or haven't worked

> > right

> > >since birth; for example no feeling in my toes in my left foot), then

> > >surgery is an important step to stop it (but not to get function back) .

> > >

> > >Great post, !

> > >

> > >Jenn

> > >

> > >On Thu, Mar 10, 2011 at 11:31 PM, <livedream_believe@...

> > >wrote:

> > >

> > >>

> > >>

> > >> ,<<SNIP>>

> > >>

> > >Its true that surgery is generally not a good idea for pain relief only

> > >> however if

> > >> that pain is so severe that people are getting suicidal and nothing else

> > is

> > >> helping, you just have to go for it and hope for the best. In the case

> > that

> > >> it doesnt help or makes it worse then you can at least say you tried but

> > >> hopefully it will help. My only caution is really make sure the pain is

> > that

> > >> bad. I never say I have a 10 anymore because everytime I think I've felt

> > the

> > >> worst pain ever, it gets worse. Be realistic and honest with your pain

> > >> scales. Starting at about 7 and especially 8 memory, concentration etc

> > is

> > >> effected, your life is consumed in pain. 9 is out of your mind and 10 is

> > >> passing out from it. There is pain so severe that even IV meds will not

> > >> touch it. Been there, done that with the ER doc in tears because he

> > couldnt

> > >> help me. When nothing helps thats the time to do surgery (in my opinion)

> > >> Otherwise, if you have to cut your expenses so that you can work less or

> > use

> > >> a scooter or hire a housekeeper or whatever changes you need to

> > >> make in your life to lighten your load and get more rest, do it.

> > >>

> > >>

> > >>

> > >

> > >

> > >

[Guest guest]

It's just so hard to do. The pain meds work on the back pain, but I have other

things that have developed.That is what is really bothering me.

I can't even touch my legs without feeling like I am touching a bruise, my butt

feels the same way, very hard to sit.

> > >

> > >>

> > >>

> > >> ,<<SNIP>>

> > >>

> > >Its true that surgery is generally not a good idea for pain relief only

> > >> however if

> > >> that pain is so severe that people are getting suicidal and nothing else

> > is

> > >> helping, you just have to go for it and hope for the best. In the case

> > that

> > >> it doesnt help or makes it worse then you can at least say you tried but

> > >> hopefully it will help. My only caution is really make sure the pain is

> > that

> > >> bad. I never say I have a 10 anymore because everytime I think I've felt

> > the

> > >> worst pain ever, it gets worse. Be realistic and honest with your pain

> > >> scales. Starting at about 7 and especially 8 memory, concentration etc

> > is

> > >> effected, your life is consumed in pain. 9 is out of your mind and 10 is

> > >> passing out from it. There is pain so severe that even IV meds will not

> > >> touch it. Been there, done that with the ER doc in tears because he

> > couldnt

> > >> help me. When nothing helps thats the time to do surgery (in my opinion)

> > >> Otherwise, if you have to cut your expenses so that you can work less or

> > use

> > >> a scooter or hire a housekeeper or whatever changes you need to

> > >> make in your life to lighten your load and get more rest, do it.

> > >>

> > >>

> > >>

> > >

> > >

> > >

[Guest guest]

,

The pain you describe sounds like neuropathic pain. After my second and

third surgeries, my neuropathy went through the roof. After #2, I couldn't

stand to have the sheets touch my lower legs. The worst of it lasted about

a month. Before my third surgery, my neuropathy was at an all time high.

Just horrible. The spasms were very intense as well. All the muscles would

contract at one time in my legs and hold for about 15-30 seconds. If I was

sitting down, my legs would straighten out with every muscle contracted.

Talk about the worst charlie horse ever!

Since that third surgery, my neuropathy is much better than before surgery,

but it still feels like my lower legs are burning and tingling. I have

tried every Rx on the market for neuropathy and I can't find one that works

or works and has side effects that I can tolerate. Oh, or that I can afford.

Cymbalta worked the best for me, but I can't afford it and insurance either

won't pay, or even if it does, it sends me into the coverage gap at which

point I have to pay 100% for both the Cymbalta and all my other meds. Just

can't afford that! So, I have no choice but to grin and bear it.

Jenn

On Fri, Mar 11, 2011 at 1:31 PM, Dybowski wrote:

>

>

> It's just so hard to do. The pain meds work on the back pain, but I have

> other things that have developed.That is what is really bothering me.

> I can't even touch my legs without feeling like I am touching a bruise, my

> butt feels the same way, very hard to sit.

>

>

>

[Guest guest]

Sorry, now I'm confused.

The neuropathic pain was described to me (initially when it started in May) as

pain like electricity. I do get the spasm pain but that is super rare (once a

month) when I do get it I am in it for 3-5 hours, typically one arm or leg.

I don't know why the arm?

The other pain is a burning and a feeling like I am bruised everywhere. On top

of that I have hundreds of knots.

I really do mean hundreds.

Would this all be neuropathic pain?

>,

>

>The pain you describe sounds like neuropathic pain. After my second and

>third surgeries, my neuropathy went through the roof. After #2, I couldn't

>stand to have the sheets touch my lower legs. The worst of it lasted about

>a month. Before my third surgery, my neuropathy was at an all time high.

>Just horrible. The spasms were very intense as well. All the muscles would

>contract at one time in my legs and hold for about 15-30 seconds. If I was

>sitting down, my legs would straighten out with every muscle contracted.

>Talk about the worst charlie horse ever!

>

>Since that third surgery, my neuropathy is much better than before surgery,

>but it still feels like my lower legs are burning and tingling. I have

>tried every Rx on the market for neuropathy and I can't find one that works

>or works and has side effects that I can tolerate. Oh, or that I can afford.

>Cymbalta worked the best for me, but I can't afford it and insurance either

>won't pay, or even if it does, it sends me into the coverage gap at which

>point I have to pay 100% for both the Cymbalta and all my other meds. Just

>can't afford that! So, I have no choice but to grin and bear it.

>

>Jenn

>

>On Fri, Mar 11, 2011 at 1:31 PM, Dybowski wrote:

>

>>

>>

>> It's just so hard to do. The pain meds work on the back pain, but I have

>> other things that have developed.That is what is really bothering me.

>> I can't even touch my legs without feeling like I am touching a bruise, my

>> butt feels the same way, very hard to sit.

>>

>>

>>

>

>

>