advertisement
Reply
 
Thread Tools Display Modes
Old 04-24-2008, 08:14 PM #1
yeahbut's Avatar
yeahbut yeahbut is offline
Magnate
 
Join Date: May 2007
Location: Beautiful Maine
Posts: 2,363
15 yr Member
yeahbut yeahbut is offline
Magnate
yeahbut's Avatar
 
Join Date: May 2007
Location: Beautiful Maine
Posts: 2,363
15 yr Member
Default

I myself am very pro-military also. I was on TriCare for 15+ years while I was married to my retired-military ex-husband who if it wasn't for the military doctors he wouldn't be with us today. He had a tumor in his sinus cavity that went into his brain - the military neuro in Texas that he saw knew just what this rare tumor was and had him in surgery at Walter Reed in DC within 24 hours and saved his life.....

I personally feel that yes we need to go by what our neuro's are telling us but we also need to do our own research and listen to what people tell us on the boards. Experience from the ones who have or are going through what we are is the best advice as far as I am concerned.

I am day 3 of my Steroids...... I thought they were making me depressed but maybe I was wrong.
__________________
Tough Times Don't Last ~ Tough People Do

Courage is doing what you're afraid to do. There can be NO courage unless you're scared.
yeahbut is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
beautytransforming (04-25-2008), tovaxin_lab_rat (04-24-2008)
Old 04-24-2008, 08:19 PM #2
Koala77's Avatar
Koala77 Koala77 is offline
Legendary
 
Join Date: Jan 2008
Location: Australia
Posts: 12,030
15 yr Member
Koala77 Koala77 is offline
Legendary
Koala77's Avatar
 
Join Date: Jan 2008
Location: Australia
Posts: 12,030
15 yr Member
Default

I'm sorry that you went through that severe headache after the lumbar puncture, but I feel I have to say something about MS neuros as well.

I was diagnosed 31 years ago now, so have been seeing neurologists for a very long time. Not once have I ever seen a neuro who specialises in MS, and every neuro except one, has given me excellent care. In 31 years, there has just been that one that I didn't like, and that was because of his attitude; not his medical care. All the rest have been wonderful.

Just my 10cents worth.
__________________
Eastern Australian Daylight Savings Time
and
my temperature


.

Koala77 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
beautytransforming (04-25-2008), sugarboo (04-24-2008), tovaxin_lab_rat (04-24-2008), yeahbut (04-24-2008)
Old 04-25-2008, 09:01 AM #3
beautytransforming's Avatar
beautytransforming beautytransforming is offline
Member
 
Join Date: Apr 2008
Location: Gulf Coast, Mississippi
Posts: 194
15 yr Member
beautytransforming beautytransforming is offline
Member
beautytransforming's Avatar
 
Join Date: Apr 2008
Location: Gulf Coast, Mississippi
Posts: 194
15 yr Member
Default

Quote:
Originally Posted by Av8rgirl View Post
Don't be so negative about Neuro's that are NOT MS specialist. There are a lot of very good neuro's who treat many of us who are NOT MS Specialists. That doesn't mean they don't know what they are doing. Sorry, but you just keep harping on that and it just isn't such a good thing. In fact, the neurologist that has been treating me for the past 7 years is not an MS Specialist, but is very well respected throughout the MS Community by her peers who are known as specialists.

Also, I spent 20 years being treated by military doctors and over all I had excellent care...I think I can honestly say I had only one bad experience with a military doctor and that was when we were stationed in the Philippines...she was NOT a good doctor to begin with and I am not even sure how she passed her boards. There are also other military people here who may not speak up, but I do...I am very pro-military and am currently under the TriCare system and have not had any problems.

You are entitled to your opinion just like the rest of us...but please be cognizant of how it reflects on the community as a whole.

Thanks for allowing me to express my opinion...
I Appreciate your view, and please don't mistake my not liking the military medical system as not being pro military. My husband has been in the military for 17 years and we are staying in for the long haul. I am very involved in the military community. Truth is, military docs are allowed to practice with a lot less training than a civilian doc. They usually do go and finish their educations... but...

With that said, I have not had the same treatment as you have had from the military health care system. My 17 year old daughter (well, she was my niece, but lived with us) was sent home 3 times before they found she had a life threatening pulmonary embolism. EVEN after me telling/begging them to do a CT scan. Finally on the 3rd visit to the ER (in 2 days) they took me seriously. Before the third visit they sent her home on motrin (even though she was rolling on the floor screaming in pain) That is one of my running jokes. Go to a military doc, and you get sent home on motrin (this goes FAR beyond this situation).

It took 3 months and almost weekly trips to the ER to diagnose my Gall stones. I was in a heckufalot of pain during those 3 months, and whenever I went to the ER or my PCM, I was looked at like I was nothing more than a drug seeker (because of course by the time I got there the pain had dissipated), I asked for u/s several times, but they told me it wasn't necessary. Motrin....

On my first visit of infertility treatments (ever 10 years ago) I was told, oh don't worry, we'll have your preggo in less than 3 months. 6 months later, on my last round of chlomid, my doc told me I would move on to injectables the next month. When I came in the next month, my doc had been deployed, and I was given a new doc. She took one look at me and said, "I am not helping you until you lose weight. You are to fat for me to get you pregnant. We have already wasted enough of our recourses on you. We have better luck with skinny people (I was 230 pounds)." I could not garner anything to say except, "Since I am to big to get pregnant, should I kill myself so as to not waste the air that skinny people breath?" I walked out, and never looked back. I fell into a state of depression far beyond anything I have experienced. I could have fought it, and should have turned her in, but you can't imagine what that did to me...

5 years later I go to a new medical facility. When the doc walks in, I say, "I have one question for you... will y ou ever say I am to fat to be treated (I was 260 by now). He looked at me in the weirdest way, and when I told him, he was horrified that I was treated that way. I FINALLY cried over the whole situation. They treat me. Find out my hubby is the one with the main problem also. I am still not pregnant, nor will I ever be.

It took them 1 month to diagnose a plantar wart, that was SO BAD, I was on crutches by the time it was treated.

Each time something finally got done was because of MY research and because of what I told them was wrong with me. That is why I so strongly advocate taking care of yourself and doing research.

I am also the person that when something is wrong with me, I am GOING to go to a SPECIALIST!!! I don't care how much experience a general practitioner has, the fact of the matter is, they will not be on top of it like a SPECIALIST. When I had bariatric surgery, I could have gone through the military, in which the surgeon was a GENERAL surgeon who took one class in bariatric surgery, and did 100 surgeries. Heck no. Only the best for me... BUT that is me. I waited till he deployed, and went to a civilian (ex-air force) bariatric surgeon. I also traveled 2 hours to see him, cause he was the BEST. I could have seen one of 10 that was within 1 hour of me, but I researched and found the best... When I followed up with the general, wanna be bariatric, surgeon for my 1 year, he had no clue what tests to run, when I gave him the list my surgeon gave me, I had to explain why, and he didn't think I needed to take B-12 as often as I was, even though there is no known toxicity level to b-12, and I don't absorb ANY because of my surgery.

Maybe you missed where I do intend to follow up with the neuro I am seeing. My choice because I really like her (although she did not give ANY instructions on the LP ). I also think, in her limited experience with MS, she is knowlegable and she wants to learn. HOWEVER, to have my own peace of mind, I must see the best. Get his opinion. Get what he thinks I should do with the meds (because when I asked my neuro she was honest. She does not know the differences in the meds, doesn't know how they work, doesn't know which one I should take, and says I should choose. She also knows nothine of CAMS, which is big for me). Because she was honest in what she DOES NOT know ( and lots of docs are not honest about that) I trust her judgment. I know she will always be honest with me. She also thinks she needs the LP results to give me a definitive MS diagnosis... which isn't true either. BUT, when I get the answers I want from the specialist, I want to follow up with this neuro because I believe she want sto learn, I am very big on my own care, and I will be able to answer questions, as will the MS specialist that I (or she) can talk to.

There are a lot of other horror stories I could tell you. Besides my annual PAPS, I hardly EVER go see the doctor. I have enough motrin to last a lifetime!! Literally. I was surprised. The other day, DH was sent home with a 104 temp, and they gave him TYLENOL!!!! I could not believe it.

Please don't mis-understand. I love the military. I have been treated by some GREAT docs, but the bad (because they were so serious) far outweigh that. I know this happens in the civilian world. Don't get me started on those either (I am a nurse and have worked with many docs) which is why I am so big on specialists... I have seen general docs cause far more problems than not. I just don't talk about the civilian docs cause I only work with them and I am not treated by them (except the ones I have sought out).

One other HUGE problem I have with the military system is there is no continuity of care. I think that plays a huge part in general patient dis-satisfaction. I worry about that with my neuro (which is ONE OTHER reason I am getting an outsider involved in my care). What if she deploys, and I get someone not so knowlegable, who hasn't dealt with MS, nor wants to learn about it. Well, then I fall back on the doc I saw and will follow up with yearly (the MS Specialist - which BTW, he is 3 hours away).

Hope I have cleared some things up. I guess I am much more rigid and judgemental because I work in the health care field, and when something serious has happened, I have basically found the answer myself, and had to tell the doc what it was. Military or not (I just happen to see military docs). If they were civilian, I would do just as much complaining! Don't even get me started on why I won't see a phsychologist/psychiatrist/therapist (non-military or not)...LOL

Really, I do appreciate your input and everyone's. I hope you can see why I have the issues I have. This does not happen to everyone, nor is it every doctor. I am very pro-military. I wish they could be more consistent, and send them to more CE classes.

BTW - I LOVED every doc that treated me the last 2 days in the hospital. They were great, and I did not get motrin ONE TIME
__________________
Diagnosed with MS 4/3/2008
.

Had onset attack in 4/2000
.

Can stop blaming myself for symptoms now.
.


Visit me on
.
.
beautytransforming is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
tovaxin_lab_rat (04-25-2008)
Old 09-23-2014, 08:36 PM #4
summerjc07 summerjc07 is offline
Junior Member
 
Join Date: Jul 2014
Posts: 44
8 yr Member
summerjc07 summerjc07 is offline
Junior Member
 
Join Date: Jul 2014
Posts: 44
8 yr Member
Default

I am sorry about your spinal head ache. I had mine the third day too and ended up in the ER. I did not want anything in my back again so I didn't get the blood patch and the ER dr. was not all for it either so I didn't push it. By the time the hospital that did the LP scheduled the blood patch I was functional again and cancelled it. I should have had it done the day I went to the ER. I am glad its over though and you don't have to get one every year or anything.
summerjc07 is offline   Reply With QuoteReply With Quote
Old 04-24-2008, 05:32 PM #5
beautytransforming's Avatar
beautytransforming beautytransforming is offline
Member
 
Join Date: Apr 2008
Location: Gulf Coast, Mississippi
Posts: 194
15 yr Member
beautytransforming beautytransforming is offline
Member
beautytransforming's Avatar
 
Join Date: Apr 2008
Location: Gulf Coast, Mississippi
Posts: 194
15 yr Member
Default

Quote:
Originally Posted by Av8rgirl View Post
I was sure that someone, including your DOC on the instruction sheet, should have told you to be well hydrated before the LP....sheesh, standard procedure!!!

Back is a little (ok, I lied, LOT) sore for a few days afterwards...double trauma from the LP and then the blood patch. But it's well worth it!

I hope you enjoy your mini vacation lying around in bed! At least now, you can get up when you want!!!
The anesthesiologist says he usually runs 2 liters into someone before he does an epidural. I didn't get an instruction sheet... and sometime the military is lacsidasical on their instructions. All I read about them was how they were done, I didn't do much more research than that, which is very unlike me.
__________________
Diagnosed with MS 4/3/2008
.

Had onset attack in 4/2000
.

Can stop blaming myself for symptoms now.
.


Visit me on
.
.
beautytransforming is offline   Reply With QuoteReply With Quote
Old 04-24-2008, 08:24 PM #6
sugarboo sugarboo is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,516
15 yr Member
sugarboo sugarboo is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,516
15 yr Member
Default

Quote:
Originally Posted by beautytransforming View Post
The anesthesiologist says he usually runs 2 liters into someone before he does an epidural. I didn't get an instruction sheet... and sometime the military is lacsidasical on their instructions. All I read about them was how they were done, I didn't do much more research than that, which is very unlike me.
I got no instructions from the doc or his nurse either, in fact when I mentioned to the nurse that I heard about the caffiene she gave me that moose in headlights look

I learned everything here...funny thing was even knowing all this in advance, after the hospital people acted like it was no big deal....I didn't know what to think. I did what my NT buddies said and laid in bed for 3 days, with a headache....finally on day 5 I called and raised hell and got a the red carpet treatment as I entered the ER where they were waiting for me with fluids, demerol ( I guess to calm me) and the blood patch. I felt much better just like you...what an ordeal!!! (Then the test was negitive after all that)

So glad you are feeling better!!!!!!
__________________

.
Wisdom to the soul is what health is to the body
sugarboo is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
beautytransforming (04-25-2008)
Old 04-24-2008, 08:38 PM #7
tovaxin_lab_rat's Avatar
tovaxin_lab_rat tovaxin_lab_rat is offline
Elder
 
Join Date: May 2007
Posts: 7,009
15 yr Member
tovaxin_lab_rat tovaxin_lab_rat is offline
Elder
tovaxin_lab_rat's Avatar
 
Join Date: May 2007
Posts: 7,009
15 yr Member
Default

Quote:
Originally Posted by greenjeans View Post
I got no instructions from the doc or his nurse either, in fact when I mentioned to the nurse that I heard about the caffiene she gave me that moose in headlights look

I learned everything here...funny thing was even knowing all this in advance, after the hospital people acted like it was no big deal....I didn't know what to think. I did what my NT buddies said and laid in bed for 3 days, with a headache....finally on day 5 I called and raised hell and got a the red carpet treatment as I entered the ER where they were waiting for me with fluids, demerol ( I guess to calm me) and the blood patch. I felt much better just like you...what an ordeal!!! (Then the test was negitive after all that)

So glad you are feeling better!!!!!!
I am sorry you didn't get instructions GJ...that's just not right

Even after following the instructions exactly, I've had the LP headache twice. In my experience, it really has nothing to do with the procedure, it has to do with how your body heals. I had the LP done by the same neuro all 4 times...two with a headache and two without...go figure. And I am a stickler for details! After the first one with the headache and suffering for 4 days...I literally crawled into the ER and layed on the floor in the front of the patient registration desk filling out the paperwork b/c I could not sit up at all. The person at the desk was very annoyed with me, but I honestly could not have cared less...

Then the fun came with then radiologist came out to get me and found out he couldn't do the patch under fluoroscopy b/c I am allergic to the dye. He had to call the anesthesiologist to come to the rescue. When they got done and rolled me over on my back, and tried to raise me up, I passed out. Think I scared everyone! Needless to say, I've been through the ringer with LPs and headaches. And then I had 2 more after that! The 4th one I had the headache and I went in for the blood patch right away. My neuro knew better than to make me wait more than 24 hours! It was a breeze b/c the anesthesiologist already knew the routine with me! He knows me personally! That's a help.

Bottom line...it's how you heal, not necessarily the procedure. I was flat on my back and followed the procedures to the letter each and every time. What I find coincidental is that the LPs that were negative for MS indicators were the ones that I did not have the neadache. The two positive ones I had the headache! Just coincidence say the neuros

I am glad you are feeling better too...I think everyone is. Those LP headaches are worse than migraines (I know from experience).
__________________
Cheryl
Dx: MS 2001 CRPS 2009




“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
tovaxin_lab_rat is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
sugarboo (04-24-2008)
Old 04-25-2008, 09:20 AM #8
beautytransforming's Avatar
beautytransforming beautytransforming is offline
Member
 
Join Date: Apr 2008
Location: Gulf Coast, Mississippi
Posts: 194
15 yr Member
beautytransforming beautytransforming is offline
Member
beautytransforming's Avatar
 
Join Date: Apr 2008
Location: Gulf Coast, Mississippi
Posts: 194
15 yr Member
Default

Quote:
Originally Posted by Av8rgirl View Post
I literally crawled into the ER and layed on the floor in the front of the patient registration desk filling out the paperwork b/c I could not sit up at all. The person at the desk was very annoyed with me, but I honestly could not have cared less...
OMG, I so know this. The triage nurse was asking me questions, I was sitting there writhing in pain crying so badly I could not hear him, and finally I asked, can I please lay on the floor while you ask me these UNECESSARY questions. I can't focus on what you are saying. I have an LP H/A. He got it, and took me to a bed immediately.

Quote:
Originally Posted by Av8rgirl View Post
Those LP headaches are worse than migraines (I know from experience).
Far worse.... FAR, FAR worse. I had bad migraines, and have NEVER experience pain like this, EVER (I would take gall stones over these h/as). I honestly don't think I would go through another LP with the possibility of getting one of these...

I had the blood patch done by anesthesia. They don't do the fluoroscopy. It took them 3 tries. The first time she was rubbing a nerve. She tried to reposition it, but didn't work. Second time, I almost passed out, so they had to stop. Layed down about 5 mins, started again, and it was done in less than 5 mins... I was good and numb by then
__________________
Diagnosed with MS 4/3/2008
.

Had onset attack in 4/2000
.

Can stop blaming myself for symptoms now.
.


Visit me on
.
.
beautytransforming is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
tovaxin_lab_rat (04-25-2008)
Old 09-23-2014, 09:41 AM #9
nikkic nikkic is offline
New Member
 
Join Date: Sep 2014
Posts: 1
8 yr Member
nikkic nikkic is offline
New Member
 
Join Date: Sep 2014
Posts: 1
8 yr Member
Default Need advice

I had my LP on friday and it was pretty awful. The drip stopped at filling the second vial and they had to maneuver a lot to get it to start dripping again. They only gave me a local anesthesia for the procedure despite me requesting for something more. It is now Tuesday and I am waking up with extreme neck pain still, been nauseous for the past 3 days, threw up this morning, still have the headache when I am upright, and have this gagging feeling in my throat. I dont want to miss any more work and I want to be able to function again. I have heard bad stories about the blood patch and I dont want any more pain. Im afraid they wont give me anything again besides a local anesthesia if I go to the ER. I called my doctor yesterday but he has not returned my call. I am home alone until 4:30 this evening. I have been drinking lots of water, had some coffee in between, used ice packs on my neck, and have taken some warm baths. Any advice on what I should do?
nikkic is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (09-23-2014)
Old 09-23-2014, 01:23 PM #10
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

Welcome to NeuroTalk Nikkic.

I would lay flat (n0 pillow), until your headache goes away. It takes time for
the fluid to replenish itself. Took me a couple of weeks, before it went away
completely.

Let us know how it goes.
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
This Is Spinal Tap...And Blood Patch...When does pain end? emlo Spinal Disorders & Back Pain 3 10-09-2011 01:44 PM
I'm going to be hospitalized and just need to talk. aoibheann Survivors of Suicide 8 03-06-2008 10:13 PM
Hey Y'all...how I ended up "here" arthurhlevine New Member Introductions 4 01-09-2008 11:20 AM
Ended up in ER on Christmas Day Nikko Bipolar Disorder 8 12-28-2006 09:44 PM


All times are GMT -5. The time now is 01:07 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.