ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Mei Mei on July 30, 2010, 10:08:42 am
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I went to see the anesthesiologist this morning as a followup for the Occipital Nerve Block I got ten days ago. I am still getting killer headaches so he suggested Neurostimulation in the Occipital area...a wire implant with the wire extending all the way down to a box that I carry in my pocket...something like a tens unit. He gave me a DVD to watch and a phone number of another patient that has one implanted to call and talk about. It is done in the office and takes five minutes to do. The website on the DVD says PowerOverPain.com . He said if I were his sister he would tell me to do it. I still have to think about it. It also says St Jude Medical Center on it. I don't know about having a wire coming out of the head and what it'll be like sleeping. I'll give this patient a call later and see what she says. I wish there were better alternatives to getting the headaches zapped. He gave me a shot in the neck and base of the skull today when I asked for Botox. After he did it I asked if it were Botox and he said no, Botox is too expensive. What a disappointment. If Botox is too expensive, then how much is this machine he wants to put in my head?
Mei Mei
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Mei Mei,
I was really hoping you would have relief from the block, I do want to mention that I had a series of 4 blocks and they did build upon eachother...better coverage and relief after each. I have heard of the implant, I say go for it, what do you have to lose? Hopefully the patient you talk to has a good report.
Good luck,
Liz
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Mei Mei
I agree with Liz...go for it..(if the other patient loves it)
jo
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Hi, Mei Mei. Dr. D. also recommended neuromodulation to me several months ago and I am still considering it. I think Janet, who used to post frequently on this board, had also considered it as a treatment option.
staypoz
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I watched the DVD and it wasn't for me. It said that after you have the permanent implant you can't lift anything over 5 lbs.! It's just like you were a newly post op patient. It also never mentions headache patients but repeatedly mentions trunk and limb pain. It doesn't target headaches at all. I think he's off base. It also discusses the possibility of infection and scar tissue. I already have scar tissue issues and don't need more. It's more surgery. I was looking for something less invasive.
I had another killer headache last night. That's seven in a row. The only night I didn't have a headache was when I took Benedryl and Zyrtec from an itchy nose when I cam home from a outdoor cafe. I wonder if antihistamines are the answer.
Take care,
Mei Mei
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Hmm....maybe its all related sinuses ,ear....hope you keep getting the relief you seek maybe a dialey antihistamine is the answer?
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Hi, Mei Mei. I know what you mean about the DVD. However, there have been a lot of studies about the use of neurostimulation for intractable headaches -- hemicrania continua, transformed migraine, migraine, etc. I am going to do a little more investigation before I rule it out or in.
Hang in there.
staypoz
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I wish I knew the answer....
Re: the nerurostim. I am just worried about anything that warns you that after it's inserted you can't lift anything over 5 lbs. I won't be the same person again. I want to be the same person again, not an invalid. It worries me. What is the price for no headaches and no tumor?
Mei Mei
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Mei Mei,
I totally understand about the 5lbs thing, but how long does that last? Is it just in the beginning or throughout the whole treatment. Keep hanging in there, I know there's a treatment out there for you its just a matter of trial and error. I wish I could give you a big hug right now...but a cyber hug will have to do XXXXXX.
Liz
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Thanks, Liz...It's permanently implanted in surgery like a BAHA so you've got it for the rest of your life...this wire hanging from your spine with a box at the other end. I didn't know what I bargained for when I signed up for the AN surgery... the list of troubles gets longer and longer. I just don't want to make this a part of my list just because I have killer headaches. I'm going the non surgical route for my deafness and so I am for my head aches. There's got to be a better way than what this doc has to offer. I don't want to be bionic woman that can't lift 5 lbs. My granddaughter weighs 12 lbs and I want to hold her.
On a positive not, my father was in Out Patient PT last Spring to straighten out his legs that would go straight from sitting in the wheelchair for so many years. Then in April one day he suddenly couldn't walk in the walker which he previously had done and couldn't walk the length of the parallel bars. This regression was horrible and they couldn't identify why. We went to a neurologist and he couldn't figure it out and back to NRH PT and continued through June when they discharged him because he plateaued.
When we got back from Asia, we got him admitted into the Adventist Rehab. Hospital here and after 5 days of 3 hours a day of PT, OT he used the walker across the room and walked the length of the parallel bars. It was a miracle! Everyone was SO happy. They are such wonderful therapists. Even though he's almost 96 they didn't give up on him and put him on every machine they had to get him going.
My test of my bladder is on Wed. morning. I hear it's painful. Wish me luck.
Then if I have energy, off to NY while my father is out of the house. There are great buses that leave from near my house and go to mid=town.
Thanks for the Hugs...I need them and a headache free night...hope it comes,
Hugs,
Mei Mei
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Mei Mei,
Alas I know well of what you speak. And finally, after seven (lean) years because of a doctor I was sent to just over a year ago through national health in Italy, where I am also a citizen, I am off tramadol and take only a very low dose of an antihistamine (10 mg) and 5 mg. of Flexeril (generic= cyclobenzaprine) every evening. So you may have hit on something with the antihistamines. Also the nerve blocks. I had been receiving them for ten months before they really kicked in. Everyone is different, so perhaps you will need less long.
Good luck to you. I aim to give you hope!
Antigone
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Mei Mei,
So happy for your father! And enjoy the city, hopefully you won't wreck while you are there. I've heard of the buses that go back and forth to the city and for cheap. The earlier you go the better, and way cheaper than the train. I could use a day in NYC myself...
Have fun,
Liz
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I've done a bit of research on the neurostim thing and I think the lifting 5 lbs thing is only for the first few weeks. Also most of them will give you a "test drive" which is a temporary implant or attachment which will let you know if it will work for you. Also, anything that can be implanted can be unimplanted. Believe it or not, these headaches do ease up with time. Have you tried a TENS unit? I got one for my back, but I have been using it on my neck for pain that is almost always a precursor to a major meltdown. Hang in there Mei mei!
Capt Deb
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I asked my PT about getting a TENS unit a few weeks ago and she said she never brought it up because of my Titanium plate and that we couldn't use it for the headaches when there is metal involved.
I just am gun shy of this neurostim and walking around with a wire sticking out of my back. It's hard enough recovering with a loss of hearing and the skull being lumpy and numb and having headaches all the time, but adding something else to the list will just make me feel like less of a person. I want to be brought to whole again. Check out my thread on Vocal Cord Paralysis from a few days ago: I can't walk up hills with friends or keep a steady pace at cross country skiing or jogging anymore. My singing really stinks now. Listen to me sing Happy Birthday to my grandson as my voice quivers on the Facebook page: SerounMeiMeiWang Click Videos Before the vocal cord surgery I couldn't sing so I am happy for that. With each surgery we are chipped away at. You take away a tumor but you also take away something else.
Thanks for the comments on antihistamines. They really give me some sort of comfort and maybe take down the swelling, Antigone.
Great news, my cystoscopy showed a healthy bladder and a possible kidney stone so he sent me down the hall for a CT scan which showed no Kidney stone just some old irritation that healed. Thank goodness. That past two weeks of worry put to rest. Thank ALL for your support.
Well, that's my post for tonight.
Nighty Night.
Mei Mei
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I asked my PT about getting a TENS unit a few weeks ago and she said she never brought it up because of my Titanium plate and that we couldn't use it for the headaches when there is metal involved.
Weird that the PT said this about the TENs unit. I used one a lot and I know that other people here have as well...I have a titanium plate as well and have not had any issues.
That might be better for you than the implant, at least give it a try, it was my favorite part of PT...Heat and stim! I can fell it now.
Liz
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Yes, I was disappointed that she said that about me and my Titanium plate. I don't know why.
Good news. I was in a motel last night in NJ and didn't have a headache last night. Maybe it has something to do with being near the ocean and breathing in the ocean air. Allergies might have something to do with it. I'll have a lot to tell the neurologist when I get back on Tuesday.
Mei Mei
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Mei Mei
Before my surgery I was in Mexico and my tinnitus went away...So maybe ocean air has something to do with it
JO
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I have not posted in sometime but regularly check these boards for information and support. Its reassuring to know that I am not alone in dealing with the aftermath of this difficult syrgery. The most serious problem for me since my January 2009 surgery has been headaches. The device described in these posts is a trial unit used to determine suitability for an implanted neurostimulator. I finished a four day trial yesterday. The results were excellent and I am having the implant done in two weeks. I have tried everything else without success except nerve blocks and botox which my insurance company would not approve. Fortunately they did approve the neurostimulator. Although I sam not thrilled about more surgery, I am excited about the prospect of relief, especially without the side effects of medicine. The trial was easy and the surgery is day surgery. For those of you who have had difficult to treat , severe headaches, this is an option you should at least explore and get more information about. Best of luck to all of you. I will check in with an update on the permanent device. By the way, the device can be removed in the future and is not necessarily permanent.
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Just a note, the 5lbs restriction is a temporary post procedure restriction. It is not a long term side effect. Once the procedure is done and healed, there are no restrictions to activity. Neurostimulation has been used to treat migrain and cluster headaches for about 6 years. Although it is still a relatively new treatment, it has had about a 70% success rate. The trial which does involve a wire connected to an external device was very easy, not very uncomfortable and is ussually a good indicator of the likely success of the implanted neuro stimulator. Clearly, this is not for everone. I chose this route because nothing else worked and I had many sde effects from medications which gave me no real relief [other than pain killers which are not a long term solution].
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Please do keep us posted. Your positive experience is very encouraging news. My doctor is encouraging me to undergo this and I am leaning toward this treatment option because it is reversible and doesn't alter any anatomy. Can you share with us where you are having this done and the kind of implant you are getting?
Good luck to you and thanks for posting!
staypoz
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I am having this done at Northshore University hospital on Long Island, New York. I have an outstanding neurosurgeon. The device is made by a company called medtronics. A representative from the company gave me great support and assistance during the trial. I found out about this when my wife saw an article about it in a newsletter from the hospital. In fact in the 24 hours since the trial device was removed my headache pain has increased again dramatically. I started to feel relief during the trial within a couple of hours. During the next two days the pain was reduced by about 75% which was a tremendous relief. I'll post with updates once I hace the device for a few days.
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brp,
Thanks so much for the information! We are all excited to hear about your results. Can I ask where your headaches occur (frontal, temporal, occipital) and what surgical approach you had and the size of your tumor? Not being nosey, just curious to compare symptoms.
Good luck,
Capt Deb
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Here's an article on the Medtronics neurostim for migraine
http://wwwp.medtronic.com/Newsroom/NewsReleaseDetails.do?itemId=1214482108297&format=print&lang=en_US (http://wwwp.medtronic.com/Newsroom/NewsReleaseDetails.do?itemId=1214482108297&format=print&lang=en_US)
Capt Deb
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BRP,
Thanks for contributing all of this. I was really nervous about this treatment especially when the DVD didn't mention headaches at all but mentioned only pain in the Trunk and extrmities area only. It was not from Medtronics but from St. Jude's. I suppose the doctor has a different supplier. Medtronic is a well known device manufacturer on the medical scene and well trusted. I'm impressed with your results and relief. Your symptoms sound the same as ours so we are all very interested to hear about your experience. I'm sorry to hear that you weren't getting good results with Botox which I was getting ready to try next.
I've been using Benedryl and Zyrtec instead of Verapamil for the past three nights with excellent results ( no headache!!) though a headache during the day because I didn't take anything at all. But prior to that all my headaches or the majority of them were in the night.
JO: That's great news about the Tinnitus...You should stay by the ocean. That's also where I get allergy relief. It may be an allergy problem.
Stay in Touch! Mei Mei
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MY tinnitus alsp disapeared in Mexico...but when i got back full force.
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It must have something to do with the climate and the dry weather. Is it dry in the parts of Mexico where you both went? Mexico is close to Arizona and people with allergies are told to move to Arizona for the asthma, maybe we should move there for the tinnitus and the headaches.
Mei Mei
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Last night I did much research on the medtronics device and I am going to talk to my back doc the next time I see him to see about an implant for my back pain. I wonder if they could implant another array in my occipital region, which I am still having problems with. I'll continue to research and see if I can find a pain clinic at Duke or something where I can get a consult. I want my life back!!!! If technology can give me this it will be a true miracle. My back pain, which I have had for 16 months causes me much stress and triggers my migraines. Maybe I can kill two birds with one stone!
Capt Deb
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I am off to physical therapy tomorow w/ same woman that helped me w/ vestube rehab....hoping to get some relief from ths excruciating neck pain.....she used some ulrasonic waves last time i think it may be close to the tens unit .....also some nassage.....then in the next couple weeks if this fails i am goiing back to give the nerve block shots a run. ::)
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My headaches generally start in the back of the head. The worst end up behind one or both eyes. I have had severe pain in various parts of the head since [but not before] my surgery. My AN was 3.5cm and was completely removed by retrosigmoid. My surgery was done by Drs. Jafar Jafar and Kohan at NYU Medical Center.
While I am not thrilled about more surgery,I am very optimistic about the neuro stimulator. Since the removal of the trial device on Monday, my headaches have come back full force. I think this is a solution that has great potential and will avoid the side effects of long term medication use [which did not work for me anyway]. The few days of the trial gave me the first real relief since the surgery. I feel that it is at least an option that should be explored and considered. Thanks for the feedback. I am happy to share my experiences and answer any question you may have.
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This sounds very promising, I can't wait to hear if it helps!
Liz
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brp51d,
I know that neurostimulation has been around a long time for back pain, but its use is still fairly new for head pain. My doctor didn't think I would have any problems getting my insurance company to pay for it, but I wondered if you have encountered any problems with your insurer?
staypoz
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Just throwing this in as a point of information and for what it's worth: My wife suffers from spine-related leg pains and the doctors said more surgery wouldn't help. She went through the nerve blocks and other therapies and the pain, often near-debilitating, persisted. She flatly refused to take narcotic medicines because, as she put it, "I don't want to spend my life in a fog". I agreed.
Her pain management doctor suggested an implanted nurostimulator to counteract the leg pain, which was nerve-related. She opted for the device. It was surgically installed by the pain management doctor in the hospital, as an outpatient. She was given a programmer that she uses to adjust the stimulation as needed. The battery is supposed to last about 2 years, then a new stimulator will have to be implanted (just above the buttocks) . Although the operation is relatively minor she was given an anesthetic and was unconscious during the 1 hour surgery. The stimulator works well and her pain has been reduced approximately 70%, for which she is grateful. The MedTronics rep was extremely helpful and solicitous and is always available via her cell phone. Medicare and Blue Cross paid for the device and the surgery, which was billed at approximately $30,000. total although Medicare and BC paid about 25% of that.
Here is a link to the Medtronic web page and a photo of the 'Patient Programmer' that she uses to adjust the device's nerve stimulation. http://www.medtronic.com/your-health/chronic-back-and-leg-pain/device/neurostimulators/our-neurostimulators-for-pain/mystim-programmer/index.htm (http://www.medtronic.com/your-health/chronic-back-and-leg-pain/device/neurostimulators/our-neurostimulators-for-pain/mystim-programmer/index.htm)
Of course, I have no idea whether this device (or one like it) will be efficacious in reducing headache pain, but the device has worked well for my wife, so far.
Jim
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Thank you for this story, Jim. Like the DVD the doctor gave me, this link says that the device is intended for trunk and leg pain and not targeted for our headaches:
http://www.medtronic.com/your-health/chronic-back-and-leg-pain/device/neurostimulators/questions-answers/index.htm
I'm wondering if it should be used for our occpipital headaches, if the supplier says upfront that it is not intended for this.
Mei Mei
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My insurance company approved the procedure within about three weeks. I believe siutability is determined based on various factors includind attempts to treat with medication.Although, these devices have been used promarily for back pain, experimentation to use neurostimulators for severe headache pain [usually migrain, cluster or similar resulting from trauma or surgery] for about six years. The sample of cases is still comparatively small buut the success rate is at about 70%.
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I read the medtronics link. The ns implanted to treat back pain will not help the other listed sources of pain. The device used to treat headache pain is implanted in the chest with leeds running to the occipital nerves, not the spine or nerves connected to the spine. The very helpful medtronics rep explained all of this to me in detail.
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Thanks for all the helpful information, brp51d. I have read most of the studies and to the extent I can understand them, am encouraged that another option may be available to those of us with with post-op headaches. I hope the "permanent" implant is as successful as the trial one was. Keep us posted.
staypoz
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Dear brp51d,
I also am encouraged by your results. I had a very upsetting headache last night and am having coincidentally an appointment with my neurologist this Thursday. I wanted to ask you if your headaches are constant and occur on a daily and nightly basis. Mine usually occur at night and sometimes in the daytime. I don't know if this is enough to warrant having a Neurostimulator implanted. I've already had several nerve blocks that do nothing to prevent the headaches and have yet to find someone to give me Botox so don't know if that will work for me.
How do you know it is right for you? Is it continuous pain?
Mei Mei
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Interesting thread.
I like the idea of the stimulus but not for having surgery again. The fact that its an implant - would that affect having future MRI's.
laz
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Good question, Laz.
I read the info on the link, but it didn't say what the stimulus is made out of.
If it's titanium, like the BAHA implant, MRIs aren't an issue. But if it's made out of something else, they may be.
Jan
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From everything I have read, MRIs are out if you have one of these implants.
staypoz
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I'd think really hard about this procedure if MRI's are out of the question.
Whilst I'm dreading my next MRI (not sure on what is still there) it is still the best measurement tool we have.
A real dilemna this one.
Laz
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brp51d,
Have you had the permanent implant done yet? How are things going? On Friday, I am meeting with my doc and the company representative to talk about the procedure and look at the device. If you are around, please let us know how you are progressing and I'll post after my appointment on Friday.
staypoz
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I considered the neuromodular system about 16 months ago. This was the 4th pain managemnt doctor I had been to in 7 years. He gave me two series of 4 nerve block injections over a two week period and indicated if the last series didn't work he wanted me to try this system which threaded several wires from my lower back up through my spinal column with leeds into my cervical vertbrae. The power pack would be implanted above my waist with a charger that I would place over it to charge the battery. When I questioned them intensley about this procedure they had me contact a patient advocate who worked for the company producing the system. I asked her what the track record was for post operative AN pain. She told me that it wasn't FDA approved for head pain however was approved for trunk and limb pain. I weighed the possible side effects in the phamplet and DVD and decided to hold off until there was more of a track record. It may work, I just wasn't prepared to go through what I felt would be invasive surgery, at least yet. Good luck in overcoming your pain.
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I saw a news article on one of these stimulators used for migraine on CNN or ABC or something a few years ago and the woman, who had had migraines all her life, had a great deal of relief. Personally, I would not go to this length without trying Botox first--and I am not talking about Botox once or twice, but at least three to 4 times of at least a dozen to 16 injections. I had my third round, three months apart-- about a month ago and I have not been this headache-free since I woke up from surgery 7 1/2 years ago. I seem to even have less headaches than I did BEFORE surgery. Not to say that I am entirely headache-free. I still get an occasional occipital headache which I can stop in a few hours with 2 Fioricet, an ice pack, and rest. I cannot take NSAIDS like ibuprophen or aleve at all any more due to tummy issues, hence the Fioricet, which is Tylenol with a mild dose of valium-like stuff in it. Nothing like the rolling-around-crying holding my head and wanting to DIE ones I was getting before, and I had about a hundred or so of those in the past 7 1/2 years. I spent tens of thousands of $ on expensive meds--injectable Imitrex, Topamax, even with insurance.
The funny thing is that Botox is what my neurologist mentioned to me on my second visit to him, but my insurance co refused to pay for it. It was $1200 a visit. But that was almost 8 years ago and with new information and studies some insurance cos. may have changed their tune. When I got approved for disability, I got Medicare with it and as soon as I found out that Medicare would pay for it, I scheduled the injections.
Sorry to hijack this thread, but I think that this treatment should be tried before you go planting weird things in your insides! I'm copying this post to the Botox thread as well.
Happy International Talk Like a Pirate Day to you wicked Wenches and swashbucklin' scallywags!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/skull_swords_cross_display_md_clr.gif)
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Good to know Medicare covers Botox.I will be using medicare come Dec
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Botox didn't work for me, but as we all know, not everything work for everyone.
On Friday, I had a long appointment with my doctor and the company rep to discuss the device and have decided to go ahead with trying it out. I was also able to talk at length to another patient who had the device implanted a few months ago. She also had brain surgery (not an AN), suffered debilitating headaches, and has found some significant relief since having the device implanted. She was in the office at the same time, so I got to see how it works on a real human being. Apparently, it may take up to two months to get all the insurance approvals (a psych consult is required by most insurers). They will do a test first to see if it really works, which should take about a week, and if it looks promising, move forward with a permanent implant.
I'll keep posting as I go down this road.
staypoz
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Staypoz--since you don't have a sig line, could you tell us when your surgery was, how long after your surgery did your headaches kick in and the size of your AN and surgical approach? Also did you have headaches or migraines pre-op? Might help some folks compare their issues with yours.
Best of luck to you.
Capt Deb
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Happy to! I had retrosigmoid (sub-occipital) and then a CSF leak repair (the leak was from my ear) at Johns Hopkins. To tell you the truth, I don't even remember how small the tumor was, but it was very small. I began to experience headaches about two weeks after my surgery and although they have gotten better -- less intense and with less frequency -- in the six years since my surgery, recently there has been an unexplained uptick in both. It was at that point that I decided to seriously pursue the neurostimulation option. In the past six years, I have tried: accupuncture, nerve blocks, hypnotherapy, botox, physical therapy, massage therapy, etc., and various meds, and like most of the rest of us, have gotten various diagnoses. I was the one who found Dr. Ducic, and after meeting with him, decided against surgery. I had no headaches pre-op except the occasional garden-variety tension headache. I should also say that 8 months post-AN surgery, I had to have another, unrrelated surgery that required my being positioned in yet another unnatural pose which I'm sure exacerbated the head pain. I also have an underlying medical condition that make it tricky for me to take some meds, and even the most benign ones can cause me a problem if taken over a long period of time.
The neurostimulation may not work -- that's why they do a test run -- and it's not intended to be a cure. But it may take away some of the pain, or at least get me to the point I hear some sufferers finally get to, and that is NO pain!! It IS off-label and as has been mentioned before, you're not supposed to get an MRI with one.
staypoz
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If you're guts telling you that this will take you away from pain, go for it. I hate to hear of people in pain as we all are. Good luck with it and I'll keep my fingers crossed for you. When are you doing it?
Mei Mei
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I have held off on writing until I had the surgical stapes and sutures removed. I am now three weeks past the surgery implanting the nuero stimulator. at THIS STAGE,
i AM HIGLY ENCOURAGED. aS YOU MAY KNOW FROM MY PREVIOUS POSTS, THE TRIAL DEVICE WENT VERY WELL FOR ME. iNITIALLY, THE PERMANENT DEVICE DID NOT WORK WELL FOR ME. hOWEVER, AS OF FIVE DAYS AGO i HAVE BEGUN TO EXPERIENCE A SIGNIFICANT REDUCTION IN THE SEVERITY AND FREQUENCY OF The bad headaches. [forgive me for the caps-hit button by mistake and I dont have time to retype this]. I have now gone 5 days without a crushing early am headache. I tried to get Botox by thre way. After several appeals, my insurance company approved it- then wrote me a letter saying they approved the treatment but would not pay for the medicine. If you understand that, please explain it to me. Anyway, as my doctor says, the neurostimulator is not a cure. Howver, I am now of the opinion that it is going to result in a siginificant imprtovement in the quality of my post AN lofe. The surgery was unpleasant. The first several days were painful but nowhere near as bad as the headaches. If you decide to go this route., be patient. Maximum results for headache relief, according to my doctor is 3 to 6 monthe. For me, onset of relief took a little over 2 weeks. Let me know if you have any questions.
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By the way, anyone considering this procedure should speak to your surgeon. An MRI of the headis still possible with some special precautions.
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brp51d,
Good to hear from you and that you've found some relief!!!
I've been told that the first several months you may need to come in for adjustments to the program. Is that your understanding/expectation also?
staypoz
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yes, the company reps told me that. My device is made by Medtronics and the support has been excellent.