Update

[Guest guest]

Dave said the following on 7/1/2008 4:38 PM:

> On Feb 26 I had my surgery performed by Dr in Portland

> Maine. In my opinion he did a fine job. I have been pain free since the

> surgery (with the exception of actual surgical pain, which is now

> gone.) I had no feeling in my left leg before the surgery (since

> birth), now full sensation has returned to the leg. I am still fighting

> with bowel incontinence. My stools seem loose all the time and as long

> as I am near a bathroom after meals I seem to be OK. It really is the

> only symptom I still have. Overall I am doing OK, I am hoping this

> continues as time goes by. Would be nice if the bowel issue would clear

> up but I am not holding my breath.

>

Dave,

I " had " the same problem with bowels. Ask your dr to prescribe

Cholestyramine, it works wonders for me. Also eat at least one serving

of yogurt a day.

Rick

[Guest guest]

Congratulations!  Happy Healing  

Subject: Re: Update

To: tetheredspinalcord

Date: Tuesday, July 8, 2008, 3:31 AM

Dave said the following on 7/1/2008 4:38 PM:

> On Feb 26 I had my surgery performed by Dr in Portland

> Maine. In my opinion he did a fine job. I have been pain free since the

> surgery (with the exception of actual surgical pain, which is now

> gone.) I had no feeling in my left leg before the surgery (since

> birth), now full sensation has returned to the leg. I am still fighting

> with bowel incontinence. My stools seem loose all the time and as long

> as I am near a bathroom after meals I seem to be OK. It really is the

> only symptom I still have. Overall I am doing OK, I am hoping this

> continues as time goes by. Would be nice if the bowel issue would clear

> up but I am not holding my breath.

>

Dave,

I " had " the same problem with bowels. Ask your dr to prescribe

Cholestyramine, it works wonders for me. Also eat at least one serving

of yogurt a day.

Rick

[Guest guest]

I have spina bifida and discovered I had a tethered cord three years

ago. I just turned 60 today. I got released right after I was

diagnosed.I was told that I would not be walking in a year if I did

not have the surgery. I am walking today so from that standpoint my

surgery has been a success. Unfortunately it did not help the pain and

I am in a pain management program.

About a year ago I started seeing some symptoms that had gone away

with the operation. I wondered if I might be retethered. I also have

had a few sessions of severe headache that lasted four or five days. I

have always been sensitive to headaches caused by pressure to my soft

spot on my lower back. I cannot lay on my back, sit in soft chairs, or

bend a lot without getting the headaches. My new headaches are like

the old lasting days instead of hours. Normally a couple of ibruprofen

and laying down did the trick, but no such luck with the new ones.

About a month ago I started to have more hip and leg pain and two

weeks ago I had another headache round and decided to get an

appointment with my neros.

My wife Bobby called the neros office on Monday. After pushing a

little, the office said they had an opening on Tuesday. We jumped on

it. Got up at three am and drove the 200 miles to Portland. I saw the

Doctor at 11. He wanted an mri done.I had trouble laying down for the

last MRI and said I would prefer a vertical done. His nurse called the

place and they had an appointment at noon. We drove across town and I

got my vertical MRI early Tuesday afternoon.

I took the files with me and saw my Nero at 8:30 Wed. Is this a record

or what.

The results: It looks like I have retethered. My nero wanted to wait

until he got the radiologist report to be sure. It does not appear as

bad as the first tether. He will get in touch with me with the

results. If the tether, looks like it won't cause me any further loss

function, my guess is I won't go for a second surgery. We will just

have see when I get the final report.

The most obvious problem is I do have a leak. There is a large sack

and the leak is probably in the scare tissue. We think that this is

what is causing the headaches. Since I've had these headaches all my

life, it's possible I've had this problem since my surgery at 6 mo old.

I have not seen any body post on getting headaches like I get, and the

doctors, I have seen, are not sure about what is causing this. I

originally thought it had something to do with nerves, but I now think

it has to do with spinal fluid pressure. I would sure appreciate any

comments or experiences others have had. For me the risk benefit of a

surgery is iffy. My thoughts at this point is not to have another surgery.

When I get home I'll report on the vertical MRI.

Woody

[Guest guest]

Hi Woody Glad you got into the neuro so quickly and good for you for

requesting a vertical MRI. I didn't even know such things existed and I can

remember laying on my back for one in excruciating pain after falling from a

horse and breaking my sacrum and coccyx (about 5 years after detether). I

remember trying so hard not to move and doing " Lamaze " breathing to get me

through it. Next time I'll know, Thanks! As for the headaches, I have had

headaches all my life but as you know, there are headaches and then there are

headaches. I have had two headaches in my life which have landed me in the

hospital. Both times they thought I was stroking out and ran numerous scans on

my head to rule that out (which they did). Once they had to put me on IV

steroids and anti-convulsants to get it to stop, the other fluids and Dilaudid

finally broke it. Neither time did I even consider that it might be related to

TC (when the first one happened I hadnt even been

diagnosed with TC yet) After the fact and over the years, I have come to the

conclusion that I may have " torqued " my cord and caused a small bleed or

something which aggravated my CNS. The other explanation may be Chiari which I

am currently being evaluated for. As for spinal leak headaches, I do have

experience with those first hand after my first de-tether. They were horrible

headaches and lasted for about two weeks after my surgery, then they magically

disappeared...I guess it closed up. I do also get periods in which areas of my

spine get increasingly painful, more, more, more and then peak one day, release

and then itch insanely. I wonder if I get cysts in there or something? Another

thing being looked at now. I am with you on the risks of surgery. I struggle

with it daily as I am having trouble getting my pain under control. There comes

a point when the pain is just too much and I am too tired. But then I think of

the risks and I struggle through

some more. Tough decisions come with this condition. I wish you all the best

and hope you can set aside time to have a wonderful holiday

                                                           Blessings,

Subject: Update

To: tetheredspinalcord

Date: Wednesday, November 26, 2008, 9:46 PM

I have spina bifida and discovered I had a tethered cord three years

ago. I just turned 60 today. I got released right after I was

diagnosed.I was told that I would not be walking in a year if I did

not have the surgery. I am walking today so from that standpoint my

surgery has been a success. Unfortunately it did not help the pain and

I am in a pain management program.

About a year ago I started seeing some symptoms that had gone away

with the operation. I wondered if I might be retethered. I also have

had a few sessions of severe headache that lasted four or five days. I

have always been sensitive to headaches caused by pressure to my soft

spot on my lower back. I cannot lay on my back, sit in soft chairs, or

bend a lot without getting the headaches. My new headaches are like

the old lasting days instead of hours. Normally a couple of ibruprofen

and laying down did the trick, but no such luck with the new ones.

About a month ago I started to have more hip and leg pain and two

weeks ago I had another headache round and decided to get an

appointment with my neros.

My wife Bobby called the neros office on Monday. After pushing a

little, the office said they had an opening on Tuesday. We jumped on

it. Got up at three am and drove the 200 miles to Portland. I saw the

Doctor at 11. He wanted an mri done.I had trouble laying down for the

last MRI and said I would prefer a vertical done. His nurse called the

place and they had an appointment at noon. We drove across town and I

got my vertical MRI early Tuesday afternoon.

I took the files with me and saw my Nero at 8:30 Wed. Is this a record

or what.

The results: It looks like I have retethered. My nero wanted to wait

until he got the radiologist report to be sure. It does not appear as

bad as the first tether. He will get in touch with me with the

results. If the tether, looks like it won't cause me any further loss

function, my guess is I won't go for a second surgery. We will just

have see when I get the final report.

The most obvious problem is I do have a leak. There is a large sack

and the leak is probably in the scare tissue. We think that this is

what is causing the headaches. Since I've had these headaches all my

life, it's possible I've had this problem since my surgery at 6 mo old.

I have not seen any body post on getting headaches like I get, and the

doctors, I have seen, are not sure about what is causing this. I

originally thought it had something to do with nerves, but I now think

it has to do with spinal fluid pressure. I would sure appreciate any

comments or experiences others have had. For me the risk benefit of a

surgery is iffy. My thoughts at this point is not to have another surgery.

When I get home I'll report on the vertical MRI.

Woody

[Guest guest]

I always wondered about the headaches too. They are like migraines but without

the aura...I try to describe them to my family but can't really find the right

description. I thought that it was that the spinal fluid can't always get

around the mess of nerves tangled with my cord...therefore not enough fluid

pressure to keep the other nerves ect. cushioned from their surroundings...not

sure if I'm making sense ...

Update

I have spina bifida and discovered I had a tethered cord three years

ago. I just turned 60 today. I got released right after I was

diagnosed.I was told that I would not be walking in a year if I did

not have the surgery. I am walking today so from that standpoint my

surgery has been a success. Unfortunately it did not help the pain and

I am in a pain management program.

About a year ago I started seeing some symptoms that had gone away

with the operation. I wondered if I might be retethered. I also have

had a few sessions of severe headache that lasted four or five days. I

have always been sensitive to headaches caused by pressure to my soft

spot on my lower back. I cannot lay on my back, sit in soft chairs, or

bend a lot without getting the headaches. My new headaches are like

the old lasting days instead of hours. Normally a couple of ibruprofen

and laying down did the trick, but no such luck with the new ones.

About a month ago I started to have more hip and leg pain and two

weeks ago I had another headache round and decided to get an

appointment with my neros.

My wife Bobby called the neros office on Monday. After pushing a

little, the office said they had an opening on Tuesday. We jumped on

it. Got up at three am and drove the 200 miles to Portland. I saw the

Doctor at 11. He wanted an mri done.I had trouble laying down for the

last MRI and said I would prefer a vertical done. His nurse called the

place and they had an appointment at noon. We drove across town and I

got my vertical MRI early Tuesday afternoon.

I took the files with me and saw my Nero at 8:30 Wed. Is this a record

or what.

The results: It looks like I have retethered. My nero wanted to wait

until he got the radiologist report to be sure. It does not appear as

bad as the first tether. He will get in touch with me with the

results. If the tether, looks like it won't cause me any further loss

function, my guess is I won't go for a second surgery. We will just

have see when I get the final report.

The most obvious problem is I do have a leak. There is a large sack

and the leak is probably in the scare tissue. We think that this is

what is causing the headaches. Since I've had these headaches all my

life, it's possible I've had this problem since my surgery at 6 mo old.

I have not seen any body post on getting headaches like I get, and the

doctors, I have seen, are not sure about what is causing this. I

originally thought it had something to do with nerves, but I now think

it has to do with spinal fluid pressure. I would sure appreciate any

comments or experiences others have had. For me the risk benefit of a

surgery is iffy. My thoughts at this point is not to have another surgery.

When I get home I'll report on the vertical MRI.

Woody

[Guest guest]

Hello Everybody --

I've been lying low lately. Life has been a bit topsy-turvey and complicated the

past few months. I don't like feeling frustrated and having to balance managing

my volatile pain levels with coping with getting through the day. Had my 32nd

Birthday on the 19th and so I'm one year older. It was a quiet but lovely day of

celebrating.

I lost my health insurance in February and have not gotten it back .. this

leaves me in a bind. I think the heating of my nerves I had done in January has

helped -- my pain doctor said I wouldn't be able to tell until a few months

later. I still have flare ups though like last night. I was supposed to go down

and see my own nsg at Brigham & Women's at the beginning of the month but I've

encountered scheduling problems with his nasty secretary -- thus so even with

Dr. 's office calling on my behalf (so we shall see.)

I'm headed up to Rochester, NY to see my dad's extended family and my Nana

tomorrow. I'm going to break up the trip by stopping in Albany to see some old

friends and stay overnight -- finishing the trip up on Thursday a.m. The entire

drive is 7 1/2 hours and I know I will not be able to do it in one stretch. I

could if I were traveling with my brother or a friend (as we could split of up

the drive btw the two of us.)Enjoy the beginning of spring! Here in Maine we can

see grass again but the weather has yet to warm up -- despite the sun being out.

--