Hey everyone....here in black and white this time. I am on a few other of Bens sites as well as this Fibro one.
Lately I've been all about my Geniculate Neuralgia pain and doing something about that and getting some support with my Sons Traumatic brain injury. My fibro is same as ever...currently in a slam banger of a flare with the 20 degree temps and the snow off and on. Just got our new outdoor wood burner but it isn't hooked up and running so we're heating the house by fireplace or by me canning up a storm...LOL Anyway my update is more about the GN but I thought I would share it with those of you who are so kind to check up on me by times.....warms my heart, thank you kindly!
Be sweet to yourselves...I find it is the best medicine!
Hey Everyone. So a week ago I went for my 6 month check up after my Gamma Knife procedure. I was hoping to qualify for another try at Gamma Knife as the first was unsuccessful...they game me such a small dose of radiation the first time and my Neurosurgeon and I discussed maybe upping the radiation for another try but she has decided that another Gamma Knife would be futile. She had me meet her at another office the next morning to get my first of ? PainStim implants. Don't know if anyone's had these yet and if so I would love to hear of your success or not. Mine had 3 needles placed inside my ear and a power pack behind. It runs for 72 hours and feels like a nerve jumping...a bit annoying. This first treatment only aggravated my pain but I guess the process is to reteach the brain to react to pain stimuli.
My Doctor said she would try up to 15 of these procedures to treat my Geniculate neuralgia which has gone on now for 3 years with no help from procedures so far. I'm thinking I might be able to put up with about 7/8 of these before I'll say HEY! Not WORKING!
I am very fearful of MVD but that's the next procedure on the docket says she so I will pray and hope that this PainStim will help.
In the meantime I am still on oxycontin and Lorcet for breakthrough pain, Tegretol, Neurotin, Xanax, Imitrex Injections for migraines. I have real bad fibro as well and with cold and snow returning to the Northwoods I have been a mess. Can't go outside or be in any cold or drafty area. My daughter has been buying me cute hats to wear but I wear them all the time seems like, not just to go outdoors. I can't do anything I used to do outside, like hunting and playing in the leaves with my grandbabes, taking beautiful fall walks....it's all gone for me. Makes me so sad. So much stress and unhappiness in the house as of late. Still taking care of my son who got hit by a car last year. His leg injuries are coming along very well but his traumatic brain injury... he is slow to heal from and is just not the same young man he used to be. Family issues like everyone else has but I just can't help anymore. I get confused and tongue tied trying to talk things out and I'm just not the person who can really help with anything much anymore. I have been doing a lot of canning from the garden and that makes me feel like I am contributing but I have to give it a few days in between canning sessions because I am so broken afterwards. I have been getting physical therapy twice a week but they keep on telling me that I have to take it easy in between and I think I do but I still have to try to be a contributing part of the family and it doesn't take much to hobble this body so I quit therapy for now until I can commit to their plan a bit better than I can now.
The confusion, the tears, the constant pain that I keep very well from my family...most of them. One will tell the other when they return home..."Mom had a hard morning" or "she cried the whole time she was doing dishes" etc. Sometimes I think I'd be better off just staying in my room but then I find that when I push myself to get chores done, do some canning, take care of stuff I CAN do that I'm not as aware of the physical pains as I am when I am sedentary and let them take me over. You all know that but I just thought I'd throw that out there again.
Anyway, this is what I am doing right now. After the 72 hours I rip the thing off and throw it away. My next implant procedure is Nov 4 and every 2 weeks after. I guess this PainStim has only been approved in the US for 1 year but has had success in Europe for 10. I will keep you updated on how and if it works for me. My last MRI and MRA showed an area of "inconsistency" on the nerve that has been there since I have been seeing this Neurosurgeon. They do not know what it is but "guess" that it is scarring from the shingles. Does anyone think that if I go for MVD that they will be able to section that "area" out and it will be a cure.....? I just have not heard of anyone actually having an area that can be visualized before going in....does this give me any change in my prognosis? Love to hear what you think.
I'll let ya'll go. The kids are going to carve pumpkins and that is something that I CAN do with them tonight. Here's to you all having a warm and snuggly evening. Take care, be sweet to yourselves!
I am also on BF Psoriatic Arthritis site, and have heard that the implanted stimulators that some members have had done in their spine have helped tremendously. I had even considered it, but when I mentioned it to my Rheum he said that unless I was willing to stop the Enbrel, that it could not be done, as he has had too may other patients on immune suppressant drugs with continuous infections to approve this, that it would be one or the other, and to remember that the Enbrel WAS working.
I hope this is a tremendous success for you and you can have some peace in your life once again.
So sorry to know of your son's TBI, this must be so hard for him and everyone else to handle, but I know that you are strong and loving, and would have it no other way, but to have him there with you.
You are undoubtably one of the strongest women I know, you keep going strong, though a few words of wisdom from your professionals should be listened to.
I know you will make the best decisions that you can and I hope that you will very soon be able to take those wonderful walks in your Northwoods again.
I have heard of this as my primary wants me to have this done or a pain pump implant. My spine doc says no because they said for me it would be a bandaid because they don't know the actual cause of all my pain, neuropathy, fibro, and all the rest. I hope that it works for you and you find some relief. My primary has one installed and he says it helps him so much to get thru the day and he can turn it off when you feel you don't need it. Best of luck!
I hope this works well for you. You seem to keep quiet busy. I hope you can resume your walks soon. I tend to walk late at night which drives my children crazy but we live out and their is no traffic at midnight. I hope your son does well. I am also on some of the other sites.
Good luck Northwoods. I really feel for your GN treatments. They do not sound comfortable to me at all. I hate my fibro earaches. I can’t imagine. Much love.
Thank you I have seen you other places I think. It was kinda nice the other morning and I went out and helped track a deer that my Grandson shot on the property. I have been paying for it since before I got back to the house but it was so awesome to do something that I used to be a part of every year at deer camp...I'd suffer then too but it was important to me. Can't' do deer camp anymore but can do it right from home really so I try not to mourn it too much.
You've got good kids :) Just be careful on your walks!
I had both ears operated on about a month ago. I had trouble with my right ear for years. fnally after multiple ear infections I went to an ENT my ears were not pressuring right and the right one was about to rupture. I have lost 50% of the hearing in my right ear and he told my the problem was a combination of lupus and arthritis and the fibro. I would never have thought of this.
Well, I’ve had my ENT check my ears to find nothing wrong. The pain dr says it’s part of the greater occipital nerve that changed my migraines. They changed after I was diagnosed with fibro. I get Botox treatments for them now. The nerve runs behind my ear and makes it hurt at different levels all the time.
I have been out all day with one. Just getting on my feet again. Much love.
Hi Northwoods. So, you really just rip it off and throw it away? Amazing. I'll be thinking of you on Monday.
You are one strong lady. I admire your strength. I was able to do minimal canning and put a few things in the freezer. Our oldest son who lives with us has been bringing home chantrell mushrooms for weeks. I am not one that can throw things away.
I can so relate to grieving the outdoor life we used to live. I cannot even make it out to see my sweet chickens most days. I only have 7 now, so if the feeder gets filled I don't have to worry about them this time of year. They drink the rain water that flows into their bucket.
I have been doing ok for awhile, but my neck and back pain is getting awful again. No doctors will do anything for it. My neurologist says it's arthritis and my discs are thinning. Sure would like somebody to help me with that. But,, I have found if I can get to the acupuncturist often enough, she helps a lot. I just hate those migraines that go from the neck pain and into the face though. Nothing takes that pain away.
We just put in a pellet stove. I am loving it! It's in the living room and it is wonderful, penetrating heat, like wood. We have a wood stove in the basement so that's where we live when the power goes out. And we can cook on that.
Well damn Tricky!!! That sucks! I saw 3 ENT's and they all concurred that it was post herpetic neuralgia from having such a hard case of the shingles 3 years ago. I'm pretty sure my Fibro exacerbates my Migraines, scoliosis, etc. but my pain in my ear isn't really the ear at all...it's the Intermiedus (Geniculate) nerve behind the ear, inside the skull. It's kickin my butt! ! Wears me down and then Fibro finishes me off ! Have they diagnosed the nerve pain behind your ear? Have you checked into Trigeminal Neuralgia or Facial Neuralgia's....Ben has a site for those that you might want to browse...just a thought
I've heard others speak of the Botox treatments but don't know much about the procedure or the success. I need to look into it though...my Sister has NPDHS and has found nothing to help her yet save Cannabis Medibles that relax her symptoms long enough for her to get some sleep.
Hey Tricky, I really appreciate you stopping by. Have a good day darlin...
OMG that sounds horrible and very frightening! Now I get the eye migraines, I get several kinds of migraines actually...none of them fun, right? But yours sounds different, more like a neuralgia. Do you have a Neurologist? Oh, and MRI's don't always catch the bad guy necessarily...you might want to ask for a MRA in case the problem is vascular rather than neurological. They found all kinds of problems in my brain when they did the combo MRI/MRA....info that will save my life some day. Anyway it sounds like you could use a referral to a neurologist if you don't already have one.
Thanks, Kelly, for stopping by. I hope you get some good feedback from your discussion. Be well my friend. Have a good day!
Kitty, you're a doll, thank you! I sure hope you get some answers/help as well. I just hate hearing folks say that they can't get a Doctor to help them. How does that happen? Things can be done for thinning discs and arthritis...even just some physical therapy or do you have a Chiropractor? Mine is a miracle worker....can't fix me permanently but over time my body learns how to hold an adjustment longer or how to go back into place when I overdo or whatever.
For my migraines I do Imitrex injections, flexeril and heating pad. I hate the shots but they do work, sometimes I have to do 2 and sometimes it's not a migraine that will respond to the shot. When the barometric pressure changes in a big way I get a migraine from hell. Nothing works for those and they will last up to 4 days. My Doctors are always trying to change the severity and frequency of my migraines as they are doing damage in my brain. They have attributedLesions the white matter of my brain (MRI/MRA findings) to the migraines I have been suffering with since the 1970's.
One more thing, do you have a rheumatologist? I would think they would be able to help with the arthritis. Maybe you should ask the Doctor that said your disc's are thinning to give you a referral to someone who might actually be able to help? I'm just amazed that they left you with so little to go on and your suffering continues. I'm so sorry!
Be sweet to yourself Kitty and I sure hope you can get some answers. I really appreciate you taking the time here.
You'll be in my thoughts and prayers Kitty...Always~Laurel
I so appreciate your kindness and the commiserating... Ya, the weather is kicking my butt these days but it is so beautiful here with everything white and wintery outside. Everything warm and wonderful feeling, looking and smelling inside, I'm glad our weather doesn't take big giant leaps like yours does! Whoosh!
Hope you get to feeling right side up real soon. Thank you again for you time and the thoughts and prayers. You'll be in mine as well.