Headaches after SCS implanted?
 

Hi guys...it's me again. I have a question. Has anyone ever suffered headaches after having their SCS implanted? As many of you have read, I had two implanted at the end of June (cervical and thoracic). The leads in the thoracic SCS were replaced with paddle leads three weeks ago. I have noticed that I have been getting more headaches after this last surgery, well worse headaches than usual. I suffer from migraines and always have a baseline headache but I wake up at any time during the night with one.

I know I need to call the doctor, and will do so. But I wondered if anyone else has experienced this??

Thanks -
Nanc

Ouch Nanc!
 

Headaches have not been among my repertoire for post surgical sideffects and symptoms. This one you should run by the doctor, especially if you have a well documented migraine history.

Pray for ya,
Mark56:hug:zzzzzzzzzzzzzz

Thanks Mark56. At first I thought the pain meds after surgery were the cause of the headaches, then I haven't taken them for a couple of weeks so I know I cannot blame them. They are definitely different and getting worse :(

I have been getting migraines since I was a kid. The daily preventative stuff I take has cut them down tremendously. In the last three weeks since surgery, I have gotten three or four migraines and terrible headaches daily...something is certainly up with that!

I just sent my doc an email. I am sure I will need to see him sooner than I had planned on. I am still getting that pressure in my lower back too...ugh!

Thanks for the prayers, I pray too for some smoother days. It's difficult working like this :(
Nanc

Hmmmm....
 

Not that I have experienced. Now, there are certain medications that have caused headaches for me.
Are you taking anything different that might be the culprit?
I think CSF leaks cause headaches, but not sure on this. When you visit your Dr, you might want to see if he'll rule this out.

I hope they go away soon. I know how horrible they can get. I used to suffer migraines, but it's been years since I've had one.

:hug: Rae :hug:

No Medication Change...
 

Hi Rae, medications haven't changed. At first I thought it was the pain meds since that was something new, so I stopped them and the headaches have only worsened. I will talk to him about the CSF leaks.

Thanks...

Yep
 

Among the literature I brought home after my spine was touched every single time was the warning the SF leak could occur, and would definitely produce headache severely so if it did occur, so Rae get a GOLD STAR!! [sorry, no icon] Then there is the phenomenon of chronic headache of the migraine variety since childhood, also suffered by my dear wife.

No doubt you have worked with a Neurologist on the migraine issue Nanc since it is so longstanding, and if your surgeon comes up with a blank look, a neurological brain study could be done to confirm whether things have changed, say for instance, if you have a baseline study of that sort already. Such a record exists for my wife, so that is the reason for the suggestion.

I have personally as a spouse always found these headaches to be murderously frightening, because the symptoms are so awful and mimic other possible occurrences. We have been married quite a while, and I have been scared out of my wits more times than I can recall. Glad you are gonna bring this up to the doc.

Gladly keeping the prayers flowing for you Nanc,
Mark56:grouphug:

Definitely have the history with Neurologists...brain MRI's, CT's, you name it. Decided it is purely hereditary, no cause to them. I eliminated triggers. I am also gluten free, allergic to just about everything. My migraine prevention medication has helped me oh so much. These headaches, I have to say, have increased since the surgery and are a little different which is what concerned me. I do agree, gold star for Rae...like I said, I have sent Doc and email yesterday that I hope he will read tomorrow morning and call me. After Rae's note, I did search online and found that info :(

Not having the luck I had hoped with this surgery, it was truly our last ditch effort at pain relief with this RSD.

Again, the prayers are much appreciated!
Many Thanks!
Nancy
:grouphug:

So, I spoke to the doctor...
 

well, "spoke" through several emails, and he thinks that these headaches are more like migraine type. He said headache from neck is radiated to back of head and the stimulator is in the epidural space. He also said that I could try turning the stim off and see if it decreases. I just don't know since they are worse. I see him and the St Jude rep in two weeks and we will address the back pain/pressure further.

I am seeing my regular doc this afternoon to follow-up on the IV infection I got from the procedure, so I will discuss the headaches with her.

So there is my update...:confused:

Nanc is the cervical stim meant to treat your migraines? And if so did it ease them prior to this latest surgery? That's the primary goal of my Nevro stim (although I have hopes for my fibro pain as well).

Still Prayin
 

Definitely that. Have you tried turning the stim WWWWWWAAAAAAYYYYY down, in case, like me, you just don't want to turn it off? Such a test might help you discern the effect of far less stim.

Prayin,
Mark56:grouphug:

dubliner - the cervical stim was not meant to treat my migraines, it was actually implanted for RSD pain in my hands and arms. One of the programs I have will stimulate up the back of my head, but I do not find that it helps my headaches. The thoracic one was implanted for RSD pain in my legs.

Mark56 - unfortunately, I have to keep the thoracic stim pretty low, sometimes it is WAY low because of the pressure/pain it is causing in my back! At times I have to do it with the cervical one, but I really hate turning that one down, especially during the day. I need it up so I can get through work (I do finance work). If it is off or too low, the pain is unbearable. Like when I drive, I am in agony since they are both turned off.

Maybe I could try a lower stimulation on the cervical one when I get home from work and see what results I get from it. I will do that from today until I see my doc & St Jude rep on the 16th.

Also, my family doc who I saw yesterday wanted to increase my Topamax to see if that would help. It has decreased my migraines drastically (prior to this last surgery), so she wanted to start there.

Thanks for the tips and input, as always. I love that I found this place. You guys rock!!!

Nanc
:grouphug:

In the car
 

I know it may seem odd coming from me, but the fine print regarding turn it off during driving was not displayed for me in great big easy to understand syntax, so I never have turned my Boston Sci off, driving or not, and I commute 22 miles each way to my legal job. [this would be where a drummer would go, ba da bop].


I dunno, maybe you could try a short hop on a clear stretch of road to see what affect you notice if units are working. This would be in the nature of the prescription med warnings not to use while driving until one is certain of the effect caused on the body while in use.

But then two cents, and this posting won't even purchase a piece of candy any longer.
Mark56:eek::grouphug:

driving....
 

The St Jude reps told me on several occasions not to drive with them on, my husband questioned them because I am in so much pain in the car. They each said that the chance of accident was too great because the "jolts" that could happen when you make sudden moves. I could see that because I get those jolts often, well from the cervical stim anyway.

I forgot to turn them off one day before I left my office because I was in a hurry and realized after I started driving that they were both on...I was nervous :eek:

Yup
 

Understood...... Understood. One must follow advice of their providers measured against common sense, ethics, risk of harm to self and others.....

The real issue to contemplate in any situation is whether one desires to risk ever being on a witness stand after a wreck being asked "So, during the course of your driving on the day of the incident, was your stim unit powered on or powered off?" This is the very reason why I never drove a vehicle when I was under the influence of all of the opiates I was prescribed.

I do understand,
Mark56:hug:zz

agreed...
 

I completely agree with you Mark56. I have seen people come into work with a back injury, etc., and they will be taking pain killers and I am thinking "are you crazy?" I would never take them when working or driving, my husband will always drive if I need to stim or take meds. I can't take them and work anyway. Basically he drives all the time except when I drive myself to work and the doctor :)

I was driving into work this morning and sneezed, the wheel kinda jerked. I thought if the cervical stim was on that wheel really would have jerked LOL.

It's 4 weeks since my surgery and I am sneezing so much the last few days...feels like everything is ripping inside...and the cervical stim zaps :eek: I don't want people sharing their germs with me :(

Have a good day!
Nancy

Nanc, I do have the headache problem like you described. I also have a cervical implant that seems to have triggered the headaches and my doctor agrees. However the benefits of the stim are so beneficial that I just try to deal with the headaches.

I have found that if I change the program it sometimes helps. I use a moist microwave heat pack on the back of my neck to help relax the muscles that I tense up when I am having a headache. Excederin Migraine has helped me too, but it sounds as if you already have medication for headaches. Somedays it is just a dark quiet room. I have not found anything that helps with the nausea that comes with the headache, maybe you have some suggestions?

I have to admit that I do drive with my stim on. I was really nervous at first but have gotten used to it. I now know what position to hold my head while driving and that helps with the jolts. I do watch for the heavy duty electrical lines be cause it seems that those always give me some extra zip. Lisa

I drive with mine on too. Like Lisa I too have become so used to it now I know every movement now and what to expect. I generally have it turned down low though while Im driving.......because if, say I left it on the one I use while I walk, well I couldnt drive with that one:eek:

Hi Lisa! Sorry about your headaches, that is a bummer! I surely woke up with a doozey this morning!! Excedrin does nothing for me unfortunately :( I take Fiorinal when it is getting too bad to just deal with, I can function fine with that. If it starts going to migraine status, then I take Amerge. The nausea medication I take is Phenergan. They gave me Zofran after the last two surgeries and it wasn't too bad. I take Demerol for my RSD pain when I have too, but before I can take it I have to take the nausea medication since it really upsets my tummy. I have a very high tolerance for medication working and cannot tolerate most meds. The Demerol doesn't really help my pain, but it makes me a little sleepy so it kinda takes the edge off. Have you tried Phenergan? That is part of what they would give in the shots when I would have to get one for a migraine if I am too far gone for my meds to help...

The moist heat is a good suggestion, I haven't tried that in a long time. I think I will try that tonight! Thanks!

I drive on 95 to and from work, too many crazy people weaving in and out of traffic...scares me to keep the stim on driving on there LOL.

:hug:

Oh good, Nanc - I was just going to ask if your Dr has given you anything for the nausea. So, you have the phenergan on hand. Good to hear.
I hope something will help you get rid of those nasty headaches. There's actually a forum here at NT on Headaches....Maybe you'd find some ideas or suggestions if you peeked over there. ?

And the driving, yes, I think most of us have confessed that we do drive with the unit on. The manufacturers say 'not' to have our units on while driving to cover their rears, just in case something would happen. They don't want lawsuits.
For long distances, some of us claim that's when we need the unit on the most. But in your situation, driving on a busy highway with crazy drivers, I think you are wise to be cautious about this.

Rae
:grouphug:

Hello
My name is Betty **. My husband, Charles and I have
lived in Leon County all of our lives and raised four
children here. Charles was an
hvac technician with his own business. He has always been a
productive, helpful, and loving
person.
In order for him to continue working to retirement, we were
advised of a spinal cord stimulator
that would alleviate his pain in his back and legs. Below
is a bit of his story.

Charles - 10/4/40

After many visits to pain management for pain in my leg and
hip, injections, etc.,
it was suggested that I might benefit from a spinal cord
stimulator(Boston Scientific, mfg.)
This device was installed on August 13, 2009 and I wore it
not activated for two weeks. When
it was activated, in about two hours a headache occurred. I
have had this headache
for two years.

The device was removed on October 5, 2010, thinking relief
would come. I believe the device
has injured me. My medical records from two of my doctors
state that this is indeed why my
health is gone and my quality of life is no more. I am now
under the care of a neurologist.
The latest attempt at curing the headache is with Botox
injections in the head.

I've had two sessions (3 months apart) and have seen no
change. The neurologist has told
me that if these injections do not work, there is nothing
else that can be done.

We have contacted several attorneys in the area for help
with legal action against Boston
Scientific. We can get no one to return any of our calls.
There are class action suits in process, but, we don't know
how to get on board.
Charles and I have had our "golden years" stolen from us.
We cannot even go to the grocery
store. Some days he can't even get out of bed because the
pain is encompassing.

Hi Betty!
 

Welcome to the forum! :hug:
How very heartbreaking this is to read. I'm so sorry about all of this.
You certainly should be enjoying your golden years, but this has thrown quite a wrench in things.
Don't lose hope tho, ok. I believe you're gonna end up in the hands of someone who WILL be able to do something about this.
So, your husband is still having this horrible headache even tho the unit has been removed?
I wonder if an MRI would reveal anything.
Does the headache dissipate if he drinks a strong caffeinated beverage and lie flat? Try this. If it helps then I would suspect it is some type of central spinal fluid leak. We have a CSF leak forum here you might want to take a peek at. Here's the link to get you there:
http://neurotalk.psychcentral.com/fo...aysprune=&f=78

Perhaps a puncture occurred during the SCS implantation. I've heard alot about CSF leaks. There are things that can be done about them.

Our beloved Mark56 will be along shortly to give some good input. He has a Boston Scientific. He also might be able to touch on the legal aspect of this. He knows alot about this stuff.

Please stick around and let us know how this unfolds. :hug:

Out of curiosity, I was wondering if the SCS helped with his leg pain?

I'm glad you found us. The support here never ends.

Caring,
Rae
:grouphug:

Hi Betty and Charles
 

It saddens me to read of your horrible result and the hopelessness feeling of being robbed of your Golden Years. I did a Bing browser search on the terms Boston Scientific SCS Class Action and found no indications of litigation regarding SCS although there was much litigation indicated pertinent to stents and ports, surgical mesh, ERISA, stock offerings, and purported patent infringement......

A question which pops to the surface for me is whether you all have ever made an actual appointment with a lawfirm to discuss your options as opposed to telephoning and waiting for a call back. There is a grand difference in the day to day workings of any lawfirm. Appointments are met, telephone calls from prospective clients do not rise to the ethical standard of requiring a ready, timely, or any response and ALL of this understanding the horrific pain which renders Charles imprisoned in home and bed. If an appointment can be made and attained even with the help of trusted friends to assist taking Charles to an initial consultative appointment to determine whether there are causes of action against anyone which could be pursued...... and a big thing to bear in mind is all states have a variety of laws bearing upon timing limitations in which to bring an action seeking to recover relief. The clock has been running on you all for some time now, and the issues are not necessarily limited to the manufacturer, as they may embrace the professionals who were involved in the implant and its removal.

So, obtaining an appointment for a discussion regarding the issues with counsel experienced in the laws bearing upon medical matters is a step forward apart from the placement and waiting for never returned calls from attorneys who do not see you or your husband as clients right now.

Oh, how I hope and pray beyond the stuff of thw words shared above both you and your husband may be able through proper care to receive restorative responses renewing life as you anticipated it.
Prayin here,
Mark56:grouphug: