I have an appointment with my NS's associate to be evaluated for neurostimulator on the 14th of this month. Has anyone else had this discussion with their NS or had the procedure done? Just curious on some opinions.
Not familiar with this in CM. Do you have a CM and/or Syrinx? What's the procedure for exactly?
Thanks,
Geoff
I have CM and had decompression in June. It is for my headaches and constant pressure.
ok, thanks, never came across that for HA. Hopefully, someone else here knows something about it. Sorry, you're still having problems after PFD surgery. Where did you have the surgery, and did the surgeon evaluate you for EDS and cervical Instability because that can cause continual problems after PFD
I had surgery at Detroit Medical Center. No my NS has not tested for anything else. He say surgery was a success. I say it wasn’t since I still have many of the problems as before. He did not do Duraplasty and my CSF flow post surgery is still diminished and all the Post MRI said was my CM was less low lying. Well what is less low lying from 7mm to ? So I feel lost at times. It has taken a lot for me to try and pull myself out of the depression I have been in and people at work ride my a@@ because I choose to leave early if offered like I am lazy. We’ll 90%of the time I am in extreme pain and being an RN I can’t take my meds on days I work until I get home cause the are considered mind altering meds or rather anything that can change my decision making abilities so by the time I get home I am in agonizing pain. Sorry for the long response
Sorry to hear your story. Working as an RN is stressful , and you feel medicine has failed you. Perhaps you can get another consult with Dr. Henderson in MD. He handles difficult cases, and he'll evaluate for those other things that complicate CM.
Jenn just posted a helpful video of him here:
Take care,
Geoff
I have another appointment this Tuesday for a trial neurostimulator. I haven't really told that many people because I didn't want to get my or others hopes up. I live in 24/7 chronic pain that is at a constant 8 on a 1-10 scale with pain mgmt.and often gets worse. The neurostimulator I am considering was developed by St.Judes in Ca. for people with daily migraines. It as the capacity to block C Spine and Occipital Neuralgia pain. Each patient has a different situation and results with neurostimulators. I have been working with a St. Judes representative and meet the trial requirements. If this works I will be shouting it to everyone that will listen.I have talked to other Chiarians that has had successful results with other neurostimulators that are not this specific to my needs. I will be happy to answer any questions and keep everyone updated on my experience. You do need to be post surgical. One of the only concerns is after the stimulator is placed you cannot get a MRI, so your CM has to be stable.
Tracy Z.
Melanie, I’m so sorry about your situation. I have no experience with the neurostimulator but am very hopeful for you. I have another idea for your pain, especially since you can’t take meds on work days- my NS suggested I wear a soft cervical collar after it was decided my surgery failed (pain-wise, anyway). It took the pain down from a 9 to a 2. I wear it all day and take it off at night.
I’m also sorry that the crows at work are giving you a hard time. I know you would swap a full shift and a normal life for a severe 24/7 headache and a brain injury 
just keep hanging in there Melanie, you will get your answer.
Jenn
Hi Melanie, hope today is one of your better days. I have great news for you about a neurostimulator. I had chiari surgery in 1986 with mixed results. Some of the double vision and balance problems got better but the neck and shoulder pain along with nearly daily migraines remained. My docs believed that I was probably born with chiari but a skiing accident made it symptomatic. I had several broken vertebrae in my neck and needed three surgeries to fix all of the damage. After 9 fusions in both upper and lower back I functioned better but still had lots of pain, particularly migraines.
Fast forward to years of pain meds, over 20 radiofrequency rhizotomies for the facet joints and finally my pain medicine specialist suggested a trial neurostimulator. I met all qualifications with a diqnosis of “failed spinal surgery syndrome”. The day the trial stimulaltor was turned on was the end of my migraines and some of the neck pain. I went on to have the device implanted and have had no migraines for almost 3 years. This is after 25 years of nearly daily migraines!
I still take meds that help with muscle spasms and chronic fibromyalgia issues but am living an almost normal life again. NO PAIN MEDS ANYMORE, I have to remember to keep my battery charged and visit the pain clinic every 3 months to check the stimulator. I have 3 fractured leads out of the original 16 but they have re-programmed to cover those areas. I still must be careful not to over-exert myself because the reasons for the pain are still there. I have 4 programs and can change the stimulation if I feel a twinge of a headache coming on and it always goes away.
This could be wonderful for you; please feel free to contact me if you have any questions. I was the first chiari patient to get the device from my pain doc and I was told they have implanted only a couple more since then. My battery will probably need replacing in about three years. The surgery is not a big deal considering the potential results for you.
Good luck,
Jenny
Medtronics is the only stimulator that can be used with MRI’s. I considered it, but i had to wait because i had tethered cord surgery and my pain was coming from a spinal fluid leak. i had to have 2 blood patches first. this was a few months ago. im still considering. My problem is that i have a TENS unit and when my heart is in tachycardia i cant use the unit…so the stimulator would be the same.Good luck in your decision.
Thank you for all the replies and information. My appointment is tomorrow so I will update you all tomorrow on what I find out.
Melanie,
Have you seen a pain mgmt specialist about a neurostimulator or pain issues? My appointment is tomorrow also. The St Judes neurotransmitter fits my pain issues better than the Medtronic version. There are three on the market I was told. Has a NS recommended additional CM surgery for you? I agree from your description your surgery wasn't successful. I am so sorry. I know many Chiarians that didn't have a duraplasty that had to have additional CM surgeries. One of my NS's is in Detroit Dr. Kenneth Casey. He is incredible & is Dr. Peter Jannetta's partner in Cranial Nerve Surgical Centers. He assisted Dr. Jannetta on my MVD surgery for Geniculate Neuralgia and made my 11 year old daughter fall in love with him because he was so kind. I can at least get you a consult with him if you are interested. He is at the top of my very short list of NS's I would let operate on me if I ever need it again. Dr. Jannetta is retired doing research only. Please consider the offer.You need to know your options.
Jenny,
Thank you for such a positive message. I have hope that my pain will be manageable from your experience. I would love to talk to you about it if at all possible before I have it permanently attached.This one actually runs up into your occipital area. I would love to hear everything about your process. I also have POTs but was told it wouldn't bother my tachycardia. A TENS unit doesn't either but I have low normal BP & heart rate.
Thanks,
Tracy
Tracey that would be great to get a consult with a NS that might actually listen to me. The one I am meeting with tomorrow is the associate of the NS that did my surgery. I am taking all my scans with me to see if he has a different opinion from the other also. I am now taking tops ax and fiorcet for the migraines and Ambien for sleep. I still have migraines and don’t sleep though. I just want to get to the bottom of all of this. I can’t seem to get anyone to test me for pots even when they check my bp at the NL or NS and it is 165/105 HR 105 and I usually run in the low 110/65 HR 75-80. Told it is white coat syndrome. I check it at home and it is usually normal unless I become more active. I will let you know tomorrow what happens.
That is topamax
Appointment was going well today until the NS had the audacity to tell me to stop reading about the symptoms for CM on the internet. This is when I got a little angry with him and said let me tell you I had all of my symptoms before being diagnosed. Had surgery and things were good for a couple months then I returned to work and feel like I am sliding backwards and symptoms are returning. He told me to reduce my stress at work. We’ll I am a nurse that is not gonna happen unless I don’t work. Asks why am I depressed. We’ll let me see could it be how I am feeling again. Also asks if I felt surgery was success I say no and he disagrees with me stating that my CSF flow is better than it was and herniation is a little better. We can do either neurostimulator or second surrey. He is gonna sit down and talk to the surgeon that performed my decompression to see which route would be best. In the mean time I have to get a neuropsych evaluation. I also told him I am tired of being treated like a crazy woman, I know what is going on with me medically, the risks involved, and I am not asking him to go in and just play tickle games with my brain. I want answers to what is going on and to be treated with respect. He also asked what my NL’s plan was for me. We’ll I don’t think he can do much more than he already has.
Melanie, You did an awesome job at that appointment! I can’t say the same about the physician, but you did great getting him back on track to the real issues, and advocating for yourself.
Do you really want the same guy redoing what he thinks was successful to begin with? I’m telling you, I think it would be a good idea to get a fresh set of eyes on your case- someone who has no liability to it. Perhaps someone who may even have a better skill set with decompressions. We all want to believe that our surgeons are amazing, but the truth is some are better than others, not saying your surgeon isn’t amazing- just saying we don’t know at this point. What if there is room for improvement? If it were me, I would go through the trouble and expense of making sure my brain was as good as it gets before having the stimulator surgery.
Jenn
Melanie,
Don’t look at the psych evaluation as a personal insult-it is standard procedure to qualify for the neurostimulator. I was in a group of 5 patients who went through the trial together and 3 failed the psych evaluation so did not get the trial implant. They just want to make certain that you are dedicated to the maintenance of the device and intelligent enough to keep the battery charged. Some of the people were also drug-seekers, which was obvious to all of us in the initial discussion groups that we had with Medtronic reps. Good luck, and I also agree that you need different doctors. I would find a licensed pain clinic in your area as a next logical step.
Jenny Schwab
I don’t look at the psych eval as a personal insult that part I understand I just found the doctor insulting. Thank you for you advise. I find everyone’s responses helpful