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babidor
Regular Member


Date Joined Nov 2009
Total Posts : 21
   Posted 11/17/2009 8:09 PM (GMT -7)   
I had the bloodpatch today two weeks after the botched trial. Tuesday morning is a great time to go to the ER. Out in three hours. Relief is almost instantaneous.

Have started looking at neurosurgeons to start again with the intrathecal pump test. Sadly, the Medtronic site has only one neurosurgeon listed not affiliated with the Mayo Clinic here. Almost every insurance policy bars coverage at the Mayo Clinic. So, until Suzie feels better I will muddle through on my own. It looks like I will have to go to UC San Diego. I am going to do the test. Everyone here is so high on the pump (literally and figuratively) that I have to give it a try.

Wish me luck in finding a neurosurgeon.

Thanks again all,
Bob

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 11/17/2009 8:50 PM (GMT -7)   
Hi Bob,

Glad to hear that the bloodpatch helped with the spinal headache! I was very happy that I managed to avoid getting one myself when I had my lumbar puncture done this summer. I hear they are horrendous! The last thing we need is more pain!

hugs,
Skeye

babidor
Regular Member


Date Joined Nov 2009
Total Posts : 21
   Posted 11/17/2009 9:03 PM (GMT -7)   
I find it amazing with all the pain meds floating around my system that I would feel headache pain or a toothache. I do have to say that the blood patch replicates some of the pain you feel with a discogram.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 11/17/2009 10:24 PM (GMT -7)   
Bob,
So glad you found some relief finally. Spinal headaches are the worst! Apparently narcotic pain meds are the best line for treating the pain (other than the blood patches), but honestly that just makes me wonder how anybody can function with a spinal headache & no narcotic pain meds. ugghh!

Worst thing was I thought I had a migraine. Went to the neurologist who gave me a shot of Imitrex. Got worse, was sent to the hospital & was told there they also thought it was a migraine but that maybe they should admit me. After a while of lying down, I felt a bit better & I hate hospitals so I lied & told them I was healed. Man, that was the worst headache ever!!! Couldn't sit up for even 2 minutes straight. I learned my lesson the second time around, though & protested right away. Course, they couldn't get enough blood out of my arm, so I ended up back in the office 2 days later for a second attempt. So awful. :( I definitely feel badly for you. Now they do everything sitting up. No lying down allowed -- not even under a flouroscope. :)

Wishing you well with your search for a great neurosurgeon! You'd think there would be more options out there.

frances

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/19/2009 7:27 AM (GMT -7)   
Bob,

So glad you got the blood patch done, spinal h/a are the very worst of the lot. But, please be kind to yourself and take care and so whatever they say needs to be done afterwards.

Yes, the list of drs at Medtronic is useless, Half of the drs don't either practice any longer or don't do pain mgt. Please use our search here at the forum, type in pain pumps and you may find some names there. Now, I helped someone else here but I will need your location. Not your address, just city and state. Need that ASAP. I will be out of pocket most of the day but will see if I can get a list of drs for you after you give me what I need. I am doing the drs appts thing today. I hate it lol.

Right now I am in so much pain I am considering jumping out the window. But, instead I am drinking a cup of hot coffee to help my meds to kick in quicker. Yes, hot drinks will help your pain meds kick in quicker, helps them dissolve faster. Bet ya didn't know that trick, lol. Learned it from a pharmacist/lawyer friend of mine. Our weather is changing and when it does my body rebels like a 16 yr old would. Its 46 out this morning and my body does not handle cool temps. So, yes even us peeps with pumps have a few rough spots but that's about it. If the cooler weather persists then I will get an increase on my refill the first part of December. My dr is one that waits on the patient to ask for an increase. she says we know our bodies better than anyone. I usually ask for 10% increases now that I am stable usually that's all it takes. My dr says even at the dosage I am at now I am still a very long way from being maxed out on the drug. My old dr remember told me I had already maxed out if you will remember. Ha, Ha. I will run into my old dr before long and when I do believe this, I will thank him for leaving pain mgt and getting me my new dr.

It will take me a few days to come up with some drs if its possible. I will also look into some other resources once I have your location to see what can be found too. Take care.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/19/2009 7:35 AM (GMT -7)   

  Stray, Your right!...I didn't know that a hot drink will help the med's take affect faster. Thanks for the advice, and hope you get to feeling better soon.

 

      Michael


babidor
Regular Member


Date Joined Nov 2009
Total Posts : 21
   Posted 11/19/2009 8:11 AM (GMT -7)   
So sorry suz that you are feeling so poorly. Hope you find some relief or a basement window if you feel like jumping.

I live in Paradise Valley AZ which is right in the Scottsdale Phoenix area. We have a Mayo Clinic here with several great neuro's; however, no insurance plan gets you Mayo treatment. i have AARP Medicare so I probably would be out of network.

Hope you get some relief lovely lady.
Bob

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 11/19/2009 8:20 AM (GMT -7)   
What is a blood patch? Never heard of this?
With all this talk about these pain pumps, I was wondering do people with headaches get these? My headaches are always temporal, bilateral and the pain is severe. They are not migraines. Muscles are involved and I would say a bit from nerves too. Being sick for so long and with the chronic pain cycle, the nerve pathways are all mixed up as you probably already know.
It's been ten years, I have tried everything, being it doctors or treatments or meds, you name it and no one can find any answers. so I keep reading and looking every day.

Good low pain day to all.

babidor
Regular Member


Date Joined Nov 2009
Total Posts : 21
   Posted 11/19/2009 8:35 AM (GMT -7)   
A bloodpatch is the second step in healing leaking spinal fluid.
First is rest/caffeine/fluids.
Second is bloodpatch: an anestesiologist working with an xray machines removes blood from your arm and injects it in the disc space. Your blood clots and thereby closes the hole in the sac containing your spinal fluid.

Mine worked immediately and I got ride of the headaches and muscle pain in the neck.

Having a tear is not uncommon after spinal surgery.

Hope this all helps.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 11/19/2009 8:39 AM (GMT -7)   
Thank you. Never heard of this.

Can anyone answer my question re:the pain pump for headache patients?

Suzane

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/19/2009 6:57 PM (GMT -7)   
Bob, are you saying because you have ins you cannot get accepted at the Mayo? I have known many people that have gone to the Mayo and they all had ins?
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/19/2009 7:00 PM (GMT -7)   
TMJ, I do not know if a pump can be used for headaches or not. I tried asking you in chat tonight if you are in splints for the TMJ and never got an answer from you. Also, something very good for the neck pain is is most heat. A pain pump is pretty much reserved as a last resort type of thing. If you are not seeing a pain mgt dr now may be a good time to get a ref to see one. Take care.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/20/2009 11:46 PM (GMT -7)   
Bob I have put some feelers out to see if I can help find you a dr. Will let you know what I come up with.


[color=blue>

<FONT>crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

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