Physiatrist-Pseudomenengocele-Pain

[Guest guest]

Ok, how long has it been since I talked about this...a couple of months maybe?

Finally got neurosurgeon's opinion about the pseudomenengocele...first, that he

also didn't think it was causing the level of pain I was having and second, this

happened with my last surgery...or it was plainly put " your last surgeon did

this " . Since I had moved from the one I saw today on to the one who did my

revision, the overall consensus was for me to go back to him if I was having

spine problems since he was the one who last did surgery on me and the nature of

the extensive work.

Finally, last week, got in with a pain mgt. doc. who seems to take me and my

pain seriously as he has started me off with Opana ER, 20 mg tablets to take

twice a day and 10 mg. Oxycodone to take up to 4 times a day for breakthru pain.

He said the opana would take about a week or so to get into my system and might

have to be adjusted at my next visit, which is Wed. of next week. Later I'll

talk about my first office visit with him where I wound up storming out of his

office telling him that he shouldn't be a doctor if he didn't care about

people...what a horrible experience, mainly due to my referring family doc's

staff (he was in the process of leaving that practice & has now moved to a

different city but I will follow him, as I just LOVE him as a doctor) uhm, not

sending all of my records ... or someone somewhere dropped the ball. Then

(guess I'm talking about it now!) after my storming out, he & the pain guy

talked it out, I went back & apologized for my behavior and explained why...and

it turns out that he, like I said, seems to take my pain level seriously.

Still hurting a lot, but I've been able to be much more active this past week

and it is so overwhelming in a very good way to be able to...I even got tired

one day!

So there's the update. I still have the area of pain down at the sacrum and

there's even a lump that I can feel about an inch or so up from the rectum and

over to the right about an inch or so. When I put pressure on it I can feel it

aggraviting the nerve down my leg, especially my right knee. I also think this

is attributing to my incontinence, sporatic orgasms & other things in the

lumbosacrul area. The neuro people told me that since that wasn't a spine issue

and that no nerves seemed to be entrapped or pinched in that area relating to my

spine or sacrum that I should follow up on that with my family doc. - which I

will. I did ask him if he thought it could be a malignancy and he said that it

would have shown up on the bone scan I had in February. I've had pain and

issues in that area since about 2 years after the lumbar mess started up.

I'll post later on that if it turns out to be nerve related, or something like

that...

So thar's the update!

G

[Guest guest]

G,

Sounds like things are on an upswing for you. I am so glad you finally have

doctors around you that seem to recognize the need for taking your concerns very

seriously!

I am curious about the lump you spoke of. Is that the pseudomengocele? And are

you saying that this is the result of your last revision surgery? If its the

source of your pain, do you know why it cant be surgically removed?

Lastly, I am confused. You said... " it was plainly put " your last surgeon did

this " . Since I had moved from the one I saw today on to the one who did my

revision, the overall consensus was for me to go back to him if I was having

spine problems since he was the one who last did surgery on me and the nature of

the extensive work. " .... so who are you seeing for you spine these days....the

surgeon who performed surgery before DrHey, or DrHey himself?

Enjoy the activity...but try to remember that you and your body are not all that

strong from so much passive time....dont overdo....you will pay the price any

couch potato does!

Take Care, Cam

[Guest guest]

Hi Cam,

Yes, finally, these past 10 days have been incredible. I'm by no means pain

free but am so much better and even changed the sheets & made up our bed for the

first time in...well, I absolutely cannot remember when...ordinarily doing

something like that would have landed me in bed, lying down - well, 100%

debilitated for 3 to 4 days but this medication, as it said on the information

leaflet, works for pain relief AND makes pain more tolerable. That is the

absolute truth. I do feel like I've had an extra cup of coffee, that extra zip,

and I really appreciate those who formulated this drug as it has been the best

thing that's ever happened to me! I hope and pray that the pain doc will

continue to prescribe it. It has made a night and day difference.

So, the spine docs. I'm not seeing anyone on a routine basis for my back. Dr.

Hey was the last one to do surgery, 2007. The one I saw the other day did a

L4-L5 fusion in 2005 and said that this pseudomenengocele was caused by my most

recent surgery (2007). Hope that clears that part up. And the underlying

message to me was to go back to him to fix any messes - boy they do get

attitudes when you've moved on and then come back to see them!

About the " lump " ...it was in 2005 I think that this area started hurting. It

was more in the sacrum and pelvic area...different than the lumbar pain that I

had already been having. I had mentioned this " second pain " to some of the

doctors and they just didn't comment on it. I did mention it to Dr. Hey when we

were discussing my revision surgery and he responded with " let's just fix what

we know is wrong and worry about the other later if it is still an

issue " ....those aren't verbatim but close.

I was looking on the internet and found something that pretty much described the

location and symptoms of this area that I am referencing, and though it has been

an issue with me for all of this time I attributed it to just more of the same,

just perhaps getting more full blown, if that makes sense. It was actually

being able to feel the " lump " the other day that really got my attention. I

believe that with being extra active I was able to flare up this area to the

point it was screaming at me while in the past I was so sedentary that I wasn't

doing enough activity to aggravate it. ???

I started the internet search with lumbar and sacrum search terms, then found

lumbosacrul plexus, then further Pudendal Nerve - and BINGO - if you look that

up it'll pretty much describe what I'm talking about. I will see my pain doc.

on Wednesday of this coming week and will address this to him and see if he

wants to investigate or if he wants me to start with my family doc to get more

testing or whatever...

I was told at the neurosurgery place the other day that if there were a

malignancy it would have shown up on the bone scan that was done in

February...otherwise I'd already had been to see someone about it. The

difference in now and before regarding this is that pain had increased, along

with soreness, and I was able to feel a lump right where the " source " of that

pain felt like it was coming from.

Hope some of this makes sense - I'm not entirely awake yet, though the day is

almost half over!

G

---- cammaltby <cammaltby@...> wrote:

> G,

>

> Sounds like things are on an upswing for you. I am so glad you finally have

doctors around you that seem to recognize the need for taking your concerns very

seriously!

>

> I am curious about the lump you spoke of. Is that the pseudomengocele? And are

you saying that this is the result of your last revision surgery? If its the

source of your pain, do you know why it cant be surgically removed?

>

> Lastly, I am confused. You said... " it was plainly put " your last surgeon did

this " . Since I had moved from the one I saw today on to the one who did my

revision, the overall consensus was for me to go back to him if I was having

spine problems since he was the one who last did surgery on me and the nature of

the extensive work. " .... so who are you seeing for you spine these days....the

surgeon who performed surgery before DrHey, or DrHey himself?

>

> Enjoy the activity...but try to remember that you and your body are not all

that strong from so much passive time....dont overdo....you will pay the price

any couch potato does!

>

> Take Care, Cam

>