Re: Another bad hospital experience-but home

[Guest guest]

Darla,

I'm sorry about your experience. Sounds terrible. Very dangerous. The last

time our was put under I insisted upon talking to the anestesiologist

who was doing the procedure. I gave a list of conditions that must be met. I

told her before they took away. I gave her the article by Bruce Cohen

about the extra precautions needed for mito. She got huffy with me and said

that he wasn't even an anesthesiologist. But... I made them use MH

precautions (have to flush all lines) and I list lactated ringers as an allergy

for

all my kids and me.

Darla, did you have a metabolic stroke? Did you talk to Dr. Whiteman about

this? I would call him on Monday if you haven't.

[Guest guest]

Darla, sorry to hear of the troubles you went through. Oh I really hope the numbness goes away. I remember from epidurals, and spinals with surgery and babies that I had some "weird" feelings for a few days but nothing to the extreme you mention.

Also they way you explained the numbness and odd sensations is exactly how my leg feels from nerve damage. I have had many knee surgery's two being very complicated, so the damage was expected to happen and no surprise. I have spots on my leg that if I touch one area, I actually feel it in a totally different place. One tip, be really carefull shaving!!!! It litterally took me a few years, and many cuts to master shaving a numb leg. I have also been told that "touch therapy" helps with this. I also get keloids in any surgical insicion I have so they are hypersensitive. I guess the rubbing, touching will help normalize the nerves. I honestly have never had any success but it can't hurt. The numbness has really made things complicated, even Grace at two years old knows she cannot touch my leg. Make sure they keep an eye on this, because this should not be a "normal" side effect from a spinal. The typical should only be a tingling in the legs, and only for a day or so. I really hope this goes away for you.

Best wishes, on a full recovery.

With MSN Spaces email straight to your blog. Upload jokes, photos and more. It's free!

[Guest guest]

Darla, Wow, I'm overwhelmed and I wasn't the one having surgery. You

have been through a lot. I'm glad you are at home. I'm hoping

everything is better in the next couple of days.

Geri-Anne and Wyatt, complex I

caringbridge.org/mn/wyattc

> Hi everyone,

> I saw both my two oldest children posted to let you know I was

starting

> to recover some (Didn't you just LOVE Luke's funny method of

communication!

> he loves to be original:)) They told you I was recovering slower than

> expected but didn't explain why. So.....

> We thought the operation was well planned out and even had 1

1/2 hours

> with a great anesthesiologist who knew about Mito and what to avoid,

etc.

> He wasn't the one performing the anesthesia unfortunately and sadly

even

> though he wrote in CAPITOL letters not to used either versed or lactate

> ringers, and even spoke directly to the one he was told would be in the

> operating room with me, everything was done opposite his wishes!

Another

> man performed the procedure and claims he had no access to my files or

> anything stating that he was not to use these. I was also told to

do the

> local spinal anesthesia so I would avoid all of the sedatives and

the slower

> recovery and all those meds cause only to be drugged up anyway. We

think

> the man who performed the spinal was being trained from the little I

> remember hearing it being done and then I was in and out during the

> procedure quite a bit. I remember wobbling tons while being awake and

> wondering if my legs were elevated in stirrups which I later found

out they

> were. I was also told later that I moved around so much at one

point that

> they had to put me much more heavily under. If I wouldn't have been

given

> any sedatives as planned I would have been in my right mind to sit

still,

> you know! ANYWAY... the end result was several issues. I had to

remain in

> recoverey much longer as every time I started to drift off I would stop

> breathing and I was so groggy and not waking up that they kept me

longer.

> This is where I also found out lactate ringers were being used as I

happened

> to overhear the nurse speaking to someone on the phone about it.

After that

> there was a major scuffle back and forth over the phone as to what

to do as

> they have do exactly opposite what should have been done! End

> result...ANOTHER complication! My left side never fully has " woken "

from

> anesthesia. The entire left side is involved and even my eye isn't

quite

> right. As you go down the left side the numbness gets worse and the

> weakness also. By the time you reach my knee I am totally weak and

numb.

> It feels like cold plastic to the touch. For the first several days

my knee

> buckled constantly and an MRI was performed on my back because the

> neurologists pinpointed the worst point as being at the 3rd and 4th

Lombard

> (the area where the spinal was placed. I have abnormal reflexes

just above

> the knee as well as the worst of the numbness at the knee. Anyway,

they

> were looking for a blood clot or anything to explain the

numbness/weakness.

> All they found according to the radiologist is a slipped disk in the

area

> (which I have had for many years and NEVER has caused numbness or

etc). I

> have spoken to therapist, nurses, doctors, and even a physiatrist

who have

> all stated the most likely cause is the spinal, but I think the

hospital is

> trying to blame the disk problem so they aren't liable since so much

was

> screwed up. I was sent home with a walker and told to seek PT and

nurses

> care if possible. I am getting stronger each day so I am hoping

that it

> will all return, but the numbness is still the same at this point.

When my

> family rubs my left side anywhere, it feels really weird. My back,

side,

> arm, and especially my leg are totally different feeling. Cold

things are

> like ice touching me and heated things are dull and lukewarm. This

has been

> very frustrating to deal with on top of the MAJOR repair work they

said they

> performed. They said they did more than the usual repair work as

many of my

> inner muscles were torn from my 7 births. I said, " Thanks! " I am

quite

> swollen but expected this part at least. I am just glad to be home and

> trying to recover here.

> Thanks to everyone for their responses to my kids and I am still

> praying for those who are struggling.

>

> See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org

to see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

> hypotonicity, disautonomia, SID, global delays, asthma, cyclic

vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

> gastric emptying issues...

> Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID,

GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

> phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency...

> Luke (16)migraines, sensory issues, & some evidence of SLE's...

> Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

> Marquis (3) prenatal drug & alcohol exposure with likely FAS,

behavioral

> issues, SID...

> Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

> encephalomalacia & leukomalacia, possible arachnoid cyst,

[Guest guest]

Darla

so glad to hear you are home . It sounds like a horrific experience. The surgery in itself is a major undertaking.

I know you are very thourough. Have you had an opportunity to request copies of all reports and pre-op instructions....you may need those...the doctors may not be real helpful in this instance with all that is going on, however, some admin may be real helpful....it may take time getting it, but i think it will be great insurance....also all the post-op documents, evaluations etc.

I hope you will continue to improve. Take it easy and keep us posted.

best regards

rosy

[Guest guest]

What an awful experience, Darla. I'm so sorry you have to deal with this. We will continue to pray for a speedy recovery for you. You have such a wonderful family- I know you will be well taken care of. Try to rest, as much as you possibly can.

Holly Rubio

Another bad hospital experience-but home

Hi everyone, I saw both my two oldest children posted to let you know I was staring to recover some (Didn't you just LOVE Luke's funny method of communication! he loves to be original:)) They told you I was recovering slower than expected but didn't explain why. So..... We thought the operation was well planned out and even had 1 1/2 hours with a great anesthesiologist who knew about Mito and what to avoid, etc. He wasn't the one performing the anesthesia unfortunately and sadly even though he wrote in CAPITOL letters not to used either versed or lactate ringers, and even spoke directly to the one he was told would be in the operating room with me, everything was done opposite his wishes! Another man performed the procedure and claims he had no access to my files or anything stating that he was not to use these. I was also told to do the local spinal anesthesia so I would avoid all of the sedatives and the slower recovery and all those meds cause only to be drugged up anyway. We think the man who performed the spinal was being trained from the little I remember hearing it being done and then I was in and out during the procedure quite a bit. I remember wobbling tons while being awake and wondering if my legs were elevated in stirrups which I later found out they were. I was also told later that I moved around so much at one point that they had to put me much more heavily under. If I wouldn't have been given any sedatives as planned I would have been in my right mind to sit still, you know! ANYWAY... the end result was several issues. I had to remain in recoverey much longer as every time I started to drift off I would stop breathing and I was so groggy and not waking up that they kept me longer. This is where I also found out lactate ringers were being used as I happened to overhear the nurse speaking to someone on the phone about it. After that there was a major scuffle back and forth over the phone as to what to do as they have do exactly opposite what should have been done! End result...ANOTHER complication! My left side never fully has "woken" from anesthesia. The entire left side is involved and even my eye isn't quite right. As you go down the left side the numbness gets worse and the weakness also. By the time you reach my knee I am totally weak and numb. It feels like cold plastic to the touch. For the first several days my knee buckled constantly and an MRI was performed on my back because the neurologists pinpointed the worst point as being at the 3rd and 4th Lombard (the area where the spinal was placed. I have abnormal reflexes just above the knee as well as the worst of the numbness at the knee. Anyway, they were looking for a blood clot or anything to explain the numbness/weakness. All they found according to the radiologist is a slipped disk in the area (which I have had for many years and NEVER has caused numbness or etc). I have spoken to therapist, nurses, doctors, and even a physiatrist who have all stated the most likely cause is the spinal, but I think the hospital is trying to blame the disk problem so they aren't liable since so much was screwed up. I was sent home with a walker and told to seek PT and nurses care if possible. I am getting stronger each day so I am hoping that it will all return, but the numbness is still the same at this point. When my family rubs my left side anywhere, it feels really weird. My back, side, arm, and especially my leg are totally different feeling. Cold things are like ice touching me and heated things are dull and lukewarm. This has been very frustrating to deal with on top of the MAJOR repair work they said they performed. They said they did more than the usual repair work as many of my inner muscles were torn from my 7 births. I said, "Thanks!" I am quite swollen but expected this part at least. I am just glad to be home and trying to recover here. Thanks to everyone for their responses to my kids and I am still praying for those who are struggling. :)See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks likeDarla: mommy toAsenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues...Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16)migraines, sensory issues, & some evidence of SLE's...Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),Marquis (3) prenatal drug & alcohol exposure with likely FAS, behavioral issues, SID...Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, possible arachnoid cyst, Please contact mito-owner with any problems or questions.

[Guest guest]

Dear Darla:

I am sorry you are having such troubles on top of the normal recovery

from the surgery. I am praying for you that they will be temporary.

I had some unexplainable symptoms after mine, too, but they did

resolve. Mine were not as drastic, though, and I pray that these

symptoms resolve and quickly.

Cindy Cruz

[Guest guest]

Darla,

Hoping you have a fast and complete recovery.

Sorry to hear about your surgery experience.

Praying for all of us,

AnnMarie L. - Complex IV (pre-diabetic, hypothyroid, adrenal/endocrine

issues)

Married to my best friend Rick,

Very Busy Mom to (15), (12), Cassandra (6) and

Joe (5) - complex IV, lactic acidosis, CP,

tethered chord syndrome, dysautonomia, and

a smile that never quits :-)

honeybear50317@... wrote:

Hi everyone,

I saw both my two oldest children posted to let you know I was

starting

to recover some (Didn't you just LOVE Luke's funny method of

communication!

he loves to be original:)) They told you I was recovering slower than

expected but didn't explain why. So.....

We thought the operation was well planned out and even had 1 1/2

hours

with a great anesthesiologist who knew about Mito and what to avoid,

etc.

He wasn't the one performing the anesthesia unfortunately and sadly

even

though he wrote in CAPITOL letters not to used either versed or lactate

ringers, and even spoke directly to the one he was told would be in the

operating room with me, everything was done opposite his wishes!

Another

man performed the procedure and claims he had no access to my files or

anything stating that he was not to use these. I was also told to do

the

local spinal anesthesia so I would avoid all of the sedatives and the

slower

recovery and all those meds cause only to be drugged up anyway. We

think

the man who performed the spinal was being trained from the little I

remember hearing it being done and then I was in and out during the

procedure quite a bit. I remember wobbling tons while being awake and

wondering if my legs were elevated in stirrups which I later found out

they

were. I was also told later that I moved around so much at one point

that

they had to put me much more heavily under. If I wouldn't have been

given

any sedatives as planned I would have been in my right mind to sit

still,

you know! ANYWAY... the end result was several issues. I had to

remain in

recoverey much longer as every time I started to drift off I would stop

breathing and I was so groggy and not waking up that they kept me

longer.

This is where I also found out lactate ringers were being used as I

happened

to overhear the nurse speaking to someone on the phone about it. After

that

there was a major scuffle back and forth over the phone as to what to

do as

they have do exactly opposite what should have been done! End

result...ANOTHER complication! My left side never fully has "woken"

from

anesthesia. The entire left side is involved and even my eye isn't

quite

right. As you go down the left side the numbness gets worse and the

weakness also. By the time you reach my knee I am totally weak and

numb.

It feels like cold plastic to the touch. For the first several days my

knee

buckled constantly and an MRI was performed on my back because the

neurologists pinpointed the worst point as being at the 3rd and 4th

Lombard

(the area where the spinal was placed. I have abnormal reflexes just

above

the knee as well as the worst of the numbness at the knee. Anyway,

they

were looking for a blood clot or anything to explain the

numbness/weakness.

All they found according to the radiologist is a slipped disk in the

area

(which I have had for many years and NEVER has caused numbness or

etc). I

have spoken to therapist, nurses, doctors, and even a physiatrist who

have

all stated the most likely cause is the spinal, but I think the

hospital is

trying to blame the disk problem so they aren't liable since so much

was

screwed up. I was sent home with a walker and told to seek PT and

nurses

care if possible. I am getting stronger each day so I am hoping that

it

will all return, but the numbness is still the same at this point.

When my

family rubs my left side anywhere, it feels really weird. My back,

side,

arm, and especially my leg are totally different feeling. Cold things

are

like ice touching me and heated things are dull and lukewarm. This has

been

very frustrating to deal with on top of the MAJOR repair work they said

they

performed. They said they did more than the usual repair work as many

of my

inner muscles were torn from my 7 births. I said, "Thanks!" I am

quite

swollen but expected this part at least. I am just glad to be home and

trying to recover here.

Thanks to everyone for their responses to my kids and I am still

praying for those who are struggling.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to

see

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, asthma, cyclic

vomiting,

bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID,

GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

Luke (16)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

Marquis (3) prenatal drug & alcohol exposure with likely FAS,

behavioral

issues, SID...

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, possible arachnoid cyst,

Please contact mito-owner with any problems or

questions.

[Guest guest]

Darla,

I know I'm a little behind, but I'm sorry to hear how bad things went.

I hope you are getting back to normal now and no permanent damage

was done. Your kids definately wrote great posts, I got the biggest kick

out of those, they definately made you proud.

Lois

> [Original Message]

>

> To: List Mito <Mito >

> Date: 3/18/2005 9:32:37 PM

> Subject: Another bad hospital experience-but home

>

>

> Hi everyone,

> I saw both my two oldest children posted to let you know I was

starting

> to recover some (Didn't you just LOVE Luke's funny method of

communication!

> he loves to be original:)) They told you I was recovering slower than

> expected but didn't explain why. So.....

> We thought the operation was well planned out and even had 1 1/2

hours

> with a great anesthesiologist who knew about Mito and what to avoid, etc.

> He wasn't the one performing the anesthesia unfortunately and sadly even

> though he wrote in CAPITOL letters not to used either versed or lactate

> ringers, and even spoke directly to the one he was told would be in the

> operating room with me, everything was done opposite his wishes! Another

> man performed the procedure and claims he had no access to my files or

> anything stating that he was not to use these. I was also told to do the

> local spinal anesthesia so I would avoid all of the sedatives and the

slower

> recovery and all those meds cause only to be drugged up anyway. We think

> the man who performed the spinal was being trained from the little I

> remember hearing it being done and then I was in and out during the

> procedure quite a bit. I remember wobbling tons while being awake and

> wondering if my legs were elevated in stirrups which I later found out

they

> were. I was also told later that I moved around so much at one point

that

> they had to put me much more heavily under. If I wouldn't have been

given

> any sedatives as planned I would have been in my right mind to sit still,

> you know! ANYWAY... the end result was several issues. I had to remain

in

> recoverey much longer as every time I started to drift off I would stop

> breathing and I was so groggy and not waking up that they kept me longer.

> This is where I also found out lactate ringers were being used as I

happened

> to overhear the nurse speaking to someone on the phone about it. After

that

> there was a major scuffle back and forth over the phone as to what to do

as

> they have do exactly opposite what should have been done! End

> result...ANOTHER complication! My left side never fully has " woken " from

> anesthesia. The entire left side is involved and even my eye isn't quite

> right. As you go down the left side the numbness gets worse and the

> weakness also. By the time you reach my knee I am totally weak and numb.

> It feels like cold plastic to the touch. For the first several days my

knee

> buckled constantly and an MRI was performed on my back because the

> neurologists pinpointed the worst point as being at the 3rd and 4th

Lombard

> (the area where the spinal was placed. I have abnormal reflexes just

above

> the knee as well as the worst of the numbness at the knee. Anyway, they

> were looking for a blood clot or anything to explain the

numbness/weakness.

> All they found according to the radiologist is a slipped disk in the area

> (which I have had for many years and NEVER has caused numbness or etc).

I

> have spoken to therapist, nurses, doctors, and even a physiatrist who

have

> all stated the most likely cause is the spinal, but I think the hospital

is

> trying to blame the disk problem so they aren't liable since so much was

> screwed up. I was sent home with a walker and told to seek PT and nurses

> care if possible. I am getting stronger each day so I am hoping that it

> will all return, but the numbness is still the same at this point. When

my

> family rubs my left side anywhere, it feels really weird. My back, side,

> arm, and especially my leg are totally different feeling. Cold things

are

> like ice touching me and heated things are dull and lukewarm. This has

been

> very frustrating to deal with on top of the MAJOR repair work they said

they

> performed. They said they did more than the usual repair work as many of

my

> inner muscles were torn from my 7 births. I said, " Thanks! " I am quite

> swollen but expected this part at least. I am just glad to be home and

> trying to recover here.

> Thanks to everyone for their responses to my kids and I am still

> praying for those who are struggling.

>

> See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to

see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

> hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic behaviors,

> gastric emptying issues...

> Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID,

GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

> phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency...

> Luke (16)migraines, sensory issues, & some evidence of SLE's...

> Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

> Marquis (3) prenatal drug & alcohol exposure with likely FAS, behavioral

> issues, SID...

> Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

> encephalomalacia & leukomalacia, possible arachnoid cyst,

>

>

>

> Please contact mito-owner with any problems or questions.

>