Re: advice?

April 28, 2011

Hi Carol ~ I can't answer all your questions but am sure others will chime in.

I just wanted to point out that you are still very early in your recovery and

hopefully you will continue to improve over the next year as you heal. I was

definately much worse after my TC surgery til about 1 1/2 years afterwards. The

benchmark is a year but it took me longer to see results.

I remember having very little strength in my legs and a terrible wierd sensation

in them - they felt like jelly. Are you doing any type of physio. I would

recommend this if you are not already (you did not mention this). I worked

really hard at improving my strength with physio based pilates exercises first

one-one and then in a class twice a week starting at a couple of months post-op.

I also swam as that was easier for me than walking -- but also did short walks.

I would strongly encourage you to cut back on your work for now if you can --

that would likely help you heal and you could focus on recovery and

strengthening rather than wearing yourself out from working full time. I have

other issues for which I am off work but just thinking of solely my back at 6

months post-op I could not have managed working full time.

I am now 9 months post op from a spinal fusion and it is a long haul to recover

from as well -- my neurosurgeon says 1 1/2 years. Nerves also take at least a

year to heal so I hope you improve in that area as well.

Dee

To: tetheredspinalcord

From: cbrimhall@...

Date: Thu, 28 Apr 2011 01:04:45 +0000

Subject: advice?

Hello,

I am now six months post-op and am looking for guidance. I am jumping through

hoops trying to get appropriate medical care. The problem is that there are two

Pediatric Neurosurgeons where I live. One who will not see adult patients and

the other who has a policy of not attending to patients that he did not operate.

I had my surgery out-of-state when I had Kaiser insurance which I was paying via

COBRA. Therefore, I cannot see the drs who performed my surgery.

I was finally seen by the doctor whose policy is not to attend to patients who

he did not perform surgery. He cannot (or will not) advise me to what to expect

in my recovery. He would not prescribe any medication or extend my disabled

parking permit. He tells me this must be done through primary care. Therefore, I

am seeking a primary for further care.

My concern is this: I don't even know what questions to ask. And if I cannot get

advice from a doctor who is knowledgeable about spina bifida conditions, how am

I going to get medical advice from someone who is not?

I am not even close to my pre-surgery state. I cannot walk for more than 10 to

15 minutes without severe muscle fatigue. My perineum is still numb from the

surgery. My legs/feet are significantly number than they were pre-op. I have

constant pain level 2-3, like having sore muscles all the time. This discomfort

is present all the time but not necessarily interfering with my abilities and

adls (though I delegate unloading the dishwasher and laundry to my children as

these tasks and occasionally needing assistance with my shoes from my husband).

I do have shooting burning pain down my legs and occasionally in my feet –

though I had this before, it is more constant. My sacrum hurts most of the time,

especially after sitting. But my legs aren't strong enough to keep me standing,

leaving me to suffer through my work day. Is this all to be expected? What

medications should I discuss with my new primary care physicians? Should I get

fmla documentation to cut back my work hours so I am not " pushing through the

pain " ? What on-going treatment options should I look into? In addition, I am

having troubles with bowel movements. I am very dependent on fiber

supplementation to help bulk and move my bowels. I do not have the muscle

strength or proper sensation to push smaller movements out and am straining a

lot. I am managing this through psyllium fiber and am not constipated.

Any insight for questions I should ask my new primary care physician is

appreciated. I think it is definitely time to consider medication.

Thank you, Carol

April 28, 2011

Hello Carol,

Do you have a good primary care doc who is interested in this and what you

have been through. He or she should be your advocate and may be willing to

help you find a NSG who will see you. He/She can also guide you to other

MDs that might be able to be of great help to you including an adult NSG, a

neurologist, a physiatrist (physical medicine and rehabilitation doc). If

you see any of these MDs your job is not to know what to ask right now but

rather to describe and get their input and advice. It is early and let's

pray that you will improve but you need some relief now for sure. I would

ask your primary for an adult NSG (since the pediatric ones are being

useless for you) and if that is not available, the physical medicine doc would

be my next choice with the neurologist a third choice. Please report in on

what you find and what you are doing and how you are feeling. Best wishes

for pain relief, Randee

In a message dated 4/27/2011 8:04:51 P.M. Central Daylight Time,

cbrimhall@... writes:

Hello,

I am now six months post-op and am looking for guidance. I am jumping

through hoops trying to get appropriate medical care. The problem is that there

are two Pediatric Neurosurgeons where I live. One who will not see adult

patients and the other who has a policy of not attending to patients that he

did not operate. I had my surgery out-of-state when I had Kaiser insurance

which I was paying via COBRA. Therefore, I cannot see the drs who

performed my surgery.

I was finally seen by the doctor whose policy is not to attend to patients

who he did not perform surgery. He cannot (or will not) advise me to what

to expect in my recovery. He would not prescribe any medication or extend

my disabled parking permit. He tells me this must be done through primary

care. Therefore, I am seeking a primary for further care.

My concern is this: I don't even know what questions to ask. And if I

cannot get advice from a doctor who is knowledgeable about spina bifida

conditions, how am I going to get medical advice from someone who is not?

I am not even close to my pre-surgery state. I cannot walk for more than

10 to 15 minutes without severe muscle fatigue. My perineum is still numb

from the surgery. My legs/feet are significantly number than they were

pre-op. I have constant pain level 2-3, like having sore muscles all the time.

This discomfort is present all the time but not necessarily interfering with

my abilities and adls (though I delegate unloading the dishwasher and

laundry to my children as these tasks and occasionally needing assistance with

my

shoes from my husband). I do have shooting burning pain down my legs and

occasionally in my feet â€“ though I had this before, it is more constant. My

sacrum hurts most of the time, especially after sitting. But my legs aren't

strong enough to keep me standing, leaving me to suffer through my work

day. Is this all to be expected? What medications should I discuss with my

new primary care physicians? Should I get fmla documentation to cut back my

work hours so I am not " pushing through the pain " ? What on-going treatment

options should I look into? In addition, I am having troubles with bowel

movements. I am very dependent on fiber supplementation to help bulk and move

my bowels. I do not have the muscle strength or proper sensation to push

smaller movements out and am straining a lot. I am managing this through

psyllium fiber and am not constipated.

Any insight for questions I should ask my new primary care physician is

appreciated. I think it is definitely time to consider medication.

Thank you, Carol

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April 28, 2011

Hi Carol,

I just had my second untethering and have many of the same symptoms you have. I

had a pediatric neuro that did my surgery, however, I see a regular neurologist

for my symptoms. He prescribed me Lyrica which helps with the pain (I have much

the same pain you described). My primary doctor prescribed me a pain meds and I

take anxiety meds, also. While a good primary doctor is important you also need

specialists due to the TCS and Spina Bifida. I have a neurosurgeon, a

neurologist, an urologist, my primary, and gyno. They all work together to help