Opinions Needed

[Guest guest]

In a message dated 10/24/99 12:31:15 AM, swsftwtx@... writes:

<<

I believe the traction and the treatment for Lyme both

have caused the improvement.>>

Hi

Thanks for your response. I need to clarify a few things.. My neurologist

believes I DO have Lyme, and a herniated disk that is flattening my spinal

CORD! I asked about traction, but she said that it would be almost

impossible to get the amount of traction needed for the severity of this

herniation... The idiot neurosurgeon, who will remain nameless, was the one

that said I didn't have Lyme...

I believe that my Lyme Disease is improving as I have more stamina, less

fevers, and greater strength... However, I know I have a spinal cord

problem...

Take Care

Jane

[Guest guest]

In a message dated 10/24/99 2:08:57 AM, swsftwtx@... writes:

<< Good Luck to

you, the best deal would be to find a neurosurgeon who

believes in conservative approach, not the knife first for

those bigger fees.>>

Hi

Thanks for your input.. This is serious enough to require surgery, but only

will

have surgery performed by one willing to believe that I have both Lyme and

Spinal Compression... I wish there was a non surgical alternative, however

my thorough search of the net says there is no alternative for this type of

spinal cord injury.

Remember this is a " cord " problem not a nerve impingement....

I suppose I have answered my own questions... (<: I just pray that, if the

closed MRI

results show the same degree of spinal compression, surgery isn't complicated

by those nasty Lyme buggers!

I will keep you all posted....

{{hugs}}

Jane

[Guest guest]

I don't know that I would believe a surgeon who

knows little or nothing about Lyme Disease. Both

my spouse and I have herniated discs mine cervical

and lumbar, my hubby's cervical. His got so bad that

he could just turn his arm a certain way and it would

go completely numb. Our LLMD sent him to a Lyme

aware neurosurgeon, who frist wanted my hubby to

try the neck traction thing that goes over the door and

uses water to make the weight and pull for the stretching.

Well, using it 2 x a day for 15 min at a time, and he'd

suffered for a couple of years with this arm before it

started going numb just turning it, and he no longer has

the problem unless he doesn't stay on the traction

regularly.

I believe the traction and the treatment for Lyme both

have caused the improvement. A portable t.v. that was

almost impossible for my husband to lift last year was a

piece of cake today when it had to be returned to store

for repairing. You have to make your own decisions,

but having been at the mercy of surgeons too much in

my past, I would have to have no other option to let them

cut on me again, especially regarding the discs. My .02

cents worth of opinion. BTW, I've read where it seems

many people with Fibro also have these same disc problems.

Interesting huh!

Wishing us all health and freedom from pain,

both physical and emotional -

JVSPL@... wrote:

> From: JVSPL@...

>

> Hi

> I have recently found out that I have a severely herniated cervical disk that

> is causing spinal cord compression. The neurologist believes that the

> compression of the cord is causing the numbness, weakness, and tingling

> sensations in my limbs. I have to walk with a cane for balance, as my

> proprioceptive feedback is off. My neurologist believes I have Lyme, and

> that this herniated disk is making the situation worse.

>

> I am having a closed cervical MRI done next Thursday morning, and I have

> scheduled a second opinion with another neurosurgeon. The neurosurgeon I saw

> this past week told me I did NOT have CNS Lyme,and if I don't have surgery I

> will become a quadriplegic... Nice guy huh?? He took a look at the name of

> my LLMD and just lost it... Instead of talking to me it was more like an

> attack!! At one point I had to ask him if he could speak to me without

> pointing his finger at me! It is bad enough that I am sick, I didn't need to

> be treated like a criminal!!

>

> Okay.. Enough of my vent... If the closed MRI films show this severe

> compression with spinal cord compression and meylomilacia, I am in deep

> trouble! Have any of you had surgery on cervical disks? Of those of you

> that have had any type of surgery with active Lyme disease, have you had any

> post surgical complications? I am scared shitless of surgery, but I also

> don't want to become paralyzed. I saw the films from the open MRI.... I

> saw, with my own eyes, how severely compressed my spinal cord is....

> Also, anyone from the NY area know of a GREAT neurosurgeon specializing in

> cervical disk surgery??? Any and all opinions are desired, however please

> don't send my horror stories! If the films taken Thursday show that I need

> surgery I won't have a choice, so try not to frighten me more than I am

> already!

> Take care!

> {{{hugs}}}

> Jane

>

> > Send to -Offtopiconelist messages unrelated to lyme, please.

> /archive/lyme-aid

> /archives.cgi/Lyme-Documents

> To unsubscribe, send email to -unsubscribeonelist

> You may substitute " subscribe " , or " digest " or " normal " for

> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

[Guest guest]

{{{Jane}}},

Can your LLMD connect you with a LLNeurologist? Sounds like you need a

more informed opinion. I know alot of us have the same problem. I had a

cervical and lumbar MRI last night, and should find out the results Mon.

when I see my LLMD. I'll let you know if I learn of anything that may be

of help to you. Hang in there! Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: JVSPL@...

Hi

I have recently found out that I have a severely herniated cervical disk that

is causing spinal cord compression. The neurologist believes that the

compression of the cord is causing the numbness, weakness, and tingling

sensations in my limbs. I have to walk with a cane for balance, as my

proprioceptive feedback is off. My neurologist believes I have Lyme, and

that this herniated disk is making the situation worse.

I am having a closed cervical MRI done next Thursday morning, and I have

scheduled a second opinion with another neurosurgeon. The neurosurgeon I saw

this past week told me I did NOT have CNS Lyme,and if I don't have surgery I

will become a quadriplegic... Nice guy huh?? He took a look at the name of

my LLMD and just lost it... Instead of talking to me it was more like an

attack!! At one point I had to ask him if he could speak to me without

pointing his finger at me! It is bad enough that I am sick, I didn't need to

be treated like a criminal!!

Okay.. Enough of my vent... If the closed MRI films show this severe

compression with spinal cord compression and meylomilacia, I am in deep

trouble! Have any of you had surgery on cervical disks? Of those of you

that have had any type of surgery with active Lyme disease, have you had any

post surgical complications? I am scared shitless of surgery, but I also

don't want to become paralyzed. I saw the films from the open MRI.... I

saw, with my own eyes, how severely compressed my spinal cord is....

Also, anyone from the NY area know of a GREAT neurosurgeon specializing in

cervical disk surgery??? Any and all opinions are desired, however please

don't send my horror stories! If the films taken Thursday show that I need

surgery I won't have a choice, so try not to frighten me more than I am

already!

Take care!

{{{hugs}}}

Jane

Send to -Offtopiconelist messages unrelated to lyme, please.

/archive/lyme-aid

/archives.cgi/Lyme-Documents

To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both

the message and subject header.

[Guest guest]

I can only repeat what I've heard our Lyme doctor tell

us several times, that too much unnecessary surgery is

performed on Lyme Disease patients because other doctors

do not understand that unless permanent damange has

occurred, many things can be corrected with effective

treatment for Lyme Disease.

I found out that a Holder Monitor test I had at age 24

the heart doctor recommended a pace maker be put

in my chest due to the tachycardia. My pcp at the time

didn't tell me this and I only found out years later when

I was getting medical records togehter to take to an

out of town pain specialist.

I have to agree, once they start cutting on you they can

cause more harm than help, that's not to say that you

should be closed minded about it, but got to one of the

groups where the people all have failed back syndrome

due to botched surgeries. It's very enlightening and I

would believe them over anyone else! Good Luck to

you, the best deal would be to find a neurosurgeon who

believes in conservative approach, not the knife first for

those bigger fees.

Nothing can replace a Lyme literate physician, i.e. one who treats

Lyme patients on a daily basis, and more often than not these same

Lyme literate physicians will have other doctors they can refer you

to who have at least an awareness of Lyme Disease and what all it

can do to your body. Again, wishing you the very best, and I do

very much recommend you get on one of the lists with people who

have failed back syndrome due to surgery that didn't work.

Wishing us all health and freedom from pain,

both physical and emotiional - Sandars

JVSPL@... wrote:

> From: JVSPL@...

>

> In a message dated 10/24/99 12:31:15 AM, swsftwtx@... writes:

>

> <<

> I believe the traction and the treatment for Lyme both

> have caused the improvement.>>

>

> Hi

> Thanks for your response. I need to clarify a few things.. My neurologist

> believes I DO have Lyme, and a herniated disk that is flattening my spinal

> CORD! I asked about traction, but she said that it would be almost

> impossible to get the amount of traction needed for the severity of this

> herniation... The idiot neurosurgeon, who will remain nameless, was the one

> that said I didn't have Lyme...

>

> I believe that my Lyme Disease is improving as I have more stamina, less

> fevers, and greater strength... However, I know I have a spinal cord

> problem...

> Take Care

> Jane

>

> > Send to -Offtopiconelist messages unrelated to lyme, please.

> /archive/lyme-aid

> /archives.cgi/Lyme-Documents

> To unsubscribe, send email to -unsubscribeonelist

> You may substitute " subscribe " , or " digest " or " normal " for

> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

[Guest guest]

Jane,

I have been fortunate not to have the disc problems, yet. But I have had

surgery since having Lyme, and my white blood count was below normal so I

was very apprehensive about going under, and waking up with a bad infection.

Nothing bad happened, of course, my surgery was very minor, really a biopsy,

but still surgery to me. They put me under, and removed a lymph node

(unknown before surgery) that was as big as a quarter, but longer.

Results - " Reactive Lymph node " I was wondering what it was reacting too, and

was quite certain it was the Lyme. Wish they could have looked at it for the

Bb. Good luck! I have had friends that have had successful disc surgery

though, and very glad they did. I know I haven't helped much, but wanted to

wish you luck.

Vicki

[Lyme-aid] Opinions Needed

>From: JVSPL@...

>

>Hi

>I have recently found out that I have a severely herniated cervical disk

that

>is causing spinal cord compression. The neurologist believes that the

>compression of the cord is causing the numbness, weakness, and tingling

>sensations in my limbs. I have to walk with a cane for balance, as my

>proprioceptive feedback is off. My neurologist believes I have Lyme, and

>that this herniated disk is making the situation worse.

>

>I am having a closed cervical MRI done next Thursday morning, and I have

>scheduled a second opinion with another neurosurgeon. The neurosurgeon I

saw

>this past week told me I did NOT have CNS Lyme,and if I don't have surgery

I

>will become a quadriplegic... Nice guy huh?? He took a look at the name

of

>my LLMD and just lost it... Instead of talking to me it was more like an

>attack!! At one point I had to ask him if he could speak to me without

>pointing his finger at me! It is bad enough that I am sick, I didn't need

to

>be treated like a criminal!!

>

>Okay.. Enough of my vent... If the closed MRI films show this severe

>compression with spinal cord compression and meylomilacia, I am in deep

>trouble! Have any of you had surgery on cervical disks? Of those of you

>that have had any type of surgery with active Lyme disease, have you had

any

>post surgical complications? I am scared shitless of surgery, but I also

>don't want to become paralyzed. I saw the films from the open MRI.... I

>saw, with my own eyes, how severely compressed my spinal cord is....

>Also, anyone from the NY area know of a GREAT neurosurgeon specializing in

>cervical disk surgery??? Any and all opinions are desired, however please

>don't send my horror stories! If the films taken Thursday show that I need

>surgery I won't have a choice, so try not to frighten me more than I am

>already!

>Take care!

>{{{hugs}}}

>Jane

>

[Guest guest]

Jane, no need to get alarmed. I have had Bb for over 30 years and have

had seven (7) surgeries since being infected with it. Yes, it will take

you a little longer to be free of the pain/discomfort felt prior/after

surgery. And yes, the collapse of the cervical disc can cause problem

On Sat, 23 Oct 1999 19:39:15 -0400 (EDT) Namkrats3@... (Joan)

writes:

> {{{Jane}}},

> Can your LLMD connect you with a LLNeurologist? Sounds like you need

> a

> more informed opinion. I know alot of us have the same problem. I

> had a

> cervical and lumbar MRI last night, and should find out the results

> Mon.

> when I see my LLMD. I'll let you know if I learn of anything that

> may be

> of help to you. Hang in there! Joan LI NY

>

> 1st Known Deer Tick Bites & Sx: '85

> 1st (Neg): '89

> Continued Sx & Neg. s: '90-'99

> 1st WB: 4+ Specific Bands: 4/99

> Late Neuro-LD Dx: 6/99

>

>

[Guest guest]

Jane, I posted earlier to you but I dont think it has arrived on the

scene yet. As the discs in the spine degenerate this allows the bones to

eventually touch, which pinches nerves AND compresses the spinal cord.

As the spirochetes " eats away " at the synovial fluids & spinal fluids we

are at its mercy unless the abx are there to attack it. You know all of

this. I, personally, if it was me making the decision, would have the

surgery as soon as possible to avoid possible paralysis. I am living

proof that you can live with lyme disease, albeit, painfully, but still

live. However, my latest reinfection gave me Bb, babesiosis & both

human strains of ehrlichiosis. The doxy I believe has taken care of the

ehrlic and am on Zithro/Mepron for the third time for Babs. This time, I

am improving so hopefully the babs will soon be a thing of the past.

Then, I can concentrate on trying to put lyme into remission again until

I am too old to grunt. What you are looking at here really, is quality

of life. Without surgery you will for sure probably face paralysis in

the near future. If you have the surgery you will only be having to deal

with its results for a certain period of time, not eternity. After my

low back surgery in 1970 (2 years after tick paralysis) I had residual

pain for approx 2 yrs because of the nerve compression. Also, after

surgery try to remember that scar tissue will form internally as well as

externally. It is the stretching of that scar tissue that can make you

fear you have re-injured yourself. The key to eliminating most of the

scar tissue is massage. Use a little cocoa butter for lubrication and

massage the scar as soon as the stitches come out (or staples), it is the

softening of the scar tissue that will dictate residual pain or not. The

more you massage, the less residual pain you will be left with. trust me

in this. I know what I am talking about. It will take a little time to

" desensatize " the scar so that you can really massage it deep and reach

those deep scars but persevere. It will pay off in the long run. Ice

packs are good for the pain. Try it prior to massage or after massage to

see when you get most relief. Also, after any massage, drink plenty of

WATER to flush the toxins out of your system which have been released

because of massaging. It may take 1-2 years before you wake up and

realize that you dont hurt anymore, or at least not enough to complain or

slow down. A word of warning ----- if you do not have surgery, just one

false move can chip a piece of bone loose and project it into the spinal

cord, thus causing more than you bargained for. Praying for you. Lovey

On Sat, 23 Oct 1999 22:31:54 EDT JVSPL@... writes:

> From: JVSPL@...

>

>

> In a message dated 10/24/99 2:08:57 AM, swsftwtx@...

> writes:

>

> << Good Luck to

> you, the best deal would be to find a neurosurgeon who

> believes in conservative approach, not the knife first for

> those bigger fees.>>

>

> Hi

> Thanks for your input.. This is serious enough to require surgery,

> but only

> will

> have surgery performed by one willing to believe that I have both

> Lyme and

> Spinal Compression... I wish there was a non surgical alternative,

> however

> my thorough search of the net says there is no alternative for this

> type of

> spinal cord injury.

> Remember this is a " cord " problem not a nerve impingement....

>

> I suppose I have answered my own questions... (<: I just pray

> that, if the

> closed MRI

> results show the same degree of spinal compression, surgery isn't

> complicated

> by those nasty Lyme buggers!

>

> I will keep you all posted....

> {{hugs}}

> Jane

>

> ---------------------------

[Guest guest]

My daughter just turned 13 she has a diagnosis of Aspergers, ADHD Combined type

and Anxiety Disorder with OCD Traits. She is in the 7th grade and was placed in

life skills support room. In school she recieves OT and Speech. Last week she

brought home papers from OT and as I was going through them I noticed another

students name on her papers written in cursive writing. I asked her why she had

another students paper and she openly said " oh i don't mom, the teacher aide

had me practice writing his name so I can sign a check for her " My daughters

Mobile Therapist was in the home when my daughter stated this. We got out one

of my checks and asked my daughter to show us where the teacher had her sign,

she turned the check over and said " the teacher signed here and i signed the

boys name under hers " I picked up the phone and called the school and of course

the principle would not call me back. I went to the police station and had it

put on record that there may be a fraud case concerning my daughter and the aide

at the school district. The next day I refused to send my child to school until

I got to the bottom of this. My duaghters regular teacher calls and asks what is

going on I explained the situation again and of course I got the response of "

no you daughter got confused you know how Aspergers kids are, the aide just

wanted to see what her sons handwriting should look like in the 7th grade and

then the aide said she was going to the bank your daughter must of put the two

together and thought she signed a check " I explained to the teacher that my

daughter would not know to sign a back of a check nor would she know exactly

where to sign. I told the teacher fine, then tell the aide I want to see the

check that she took to the bank that I wanted to compare signatures. The next

day I took my daughter to school and met with the teacher, principle and

teachers aide. Now after being told my daughter is confused, she doesnt know

what she is talking about, she makes things up, she precieves things wrong,etc

etc the Teachers aide admitted that " yes she did have my daughter sign the

check, she didnt know what she was thinking when she did this and dont know why

she did it. " UGGGGHHHH The school plans to take NO action against this Aide, all

they say is she is a good teacher aide. IMO if she is that good why are they

teaching my child that it is ok to sign other peoples names to anything, this is

fraud and also a federal offence. What whould you do in this situation, would

you let it go and play it by ear, would you press charges? I even thought about

having my daughter removed from this classroom and possibly the whold district.

Any thoughts and advice would be appreciated.

[Guest guest]

The aide in the best case used bad judgement. Our hands are so tied

in school. One teacher told my daughter she was going to

put her in a wheelbarrel and take her to nurse because she was putting her head

down. Such bad judgement.

You have to remain reasonable to get anywhere in the school

system. I would document that the aide used bad judgement

and that the child takes things very literal. It was very

bad judgement. My daughter never wanted to change

classes once she was in a placement. But this is an option.

On the issue of school placement. It is tough. My daughter is

now in a special needs placement but it took from kindgeraten

to 5th grade of her anxiety, school refusal and meltdowns

and advocacy with a team of experts to get her placed

into this school. My daughter has a LD so we needed a

special needs school. I would explore any other options

that keep you child in with a group of peers and not

isolated and is a small supportive setting.

Pam

>

> My daughter just turned 13 she has a diagnosis of Aspergers, ADHD Combined

type and Anxiety Disorder with OCD Traits. She is in the 7th grade and was

placed in life skills support room. In school she recieves OT and Speech. Last

week she brought home papers from OT and as I was going through them I noticed

another students name on her papers written in cursive writing. I asked her why

she had another students paper and she openly said " oh i don't mom, the teacher

aide had me practice writing his name so I can sign a check for her " My

daughters Mobile Therapist was in the home when my daughter stated this. We got

out one of my checks and asked my daughter to show us where the teacher had her

sign, she turned the check over and said " the teacher signed here and i signed

the boys name under hers " I picked up the phone and called the school and of

course the principle would not call me back. I went to the police station and

had it put on record that there may be a fraud case concerning my daughter and

the aide at the school district. The next day I refused to send my child to

school until I got to the bottom of this. My duaghters regular teacher calls and

asks what is going on I explained the situation again and of course I got the

response of " no you daughter got confused you know how Aspergers kids are, the

aide just wanted to see what her sons handwriting should look like in the 7th

grade and then the aide said she was going to the bank your daughter must of put

the two together and thought she signed a check " I explained to the teacher that

my daughter would not know to sign a back of a check nor would she know exactly

where to sign. I told the teacher fine, then tell the aide I want to see the

check that she took to the bank that I wanted to compare signatures. The next

day I took my daughter to school and met with the teacher, principle and

teachers aide. Now after being told my daughter is confused, she doesnt know

what she is talking about, she makes things up, she precieves things wrong,etc

etc the Teachers aide admitted that " yes she did have my daughter sign the

check, she didnt know what she was thinking when she did this and dont know why

she did it. " UGGGGHHHH The school plans to take NO action against this Aide, all

they say is she is a good teacher aide. IMO if she is that good why are they

teaching my child that it is ok to sign other peoples names to anything, this is

fraud and also a federal offence. What whould you do in this situation, would

you let it go and play it by ear, would you press charges? I even thought about

having my daughter removed from this classroom and possibly the whold district.

Any thoughts and advice would be appreciated.

>