This one goes out to all the care givers how do you deal? Here is my story. I am married to a lovely women that has been suffering this this for more than two years now. She has started out on the normal course of treatment meds. Our Dr. first put her on gabapentin relative low dosage. Then that did not work and he stating giving her baclofen, she had reactions from that. So they just upped the gabapentin and had her go for cyber knife. We met two great surgeons and had it done. Very shortly after that we realized it was not a success. The shocks were coming back more and more frequently and with greater intensity. A couple of months later the surgeon recommended she goes for the MVD surgery. She had that done and it seemed to work in the beginning. She was finally able to brush her teeth, eat, ect . A short time after having the surgery the shocks started coming back. At this the Dr.’s started upping the medicines. They tried her on tegratol, which did not work because she started getting allergenic reactions. So they increased the gabapentin to 3600 mg per day, still not relief. We went back again and this time we started getting the comments like “She has a tough case”, “You are a difficult one”. The Dr. recommended putting her on 5000 mg of gabapentin. We did not feel comfortable with that because it was beyond the recommended dosage for this drug. He they gave her Lyrica. Fast forward a month or so and that too is not working, we had a follow-up appointment with the surgeon. We then heard those same words like “She has a tough case”, “You are a difficult one”. He does not feel it is safe to do a surgery at this time due to all the complications she has had. At this point she is so much pain she has problems talking, eating, and sleeping as well as other things at this point she is getting 250-300 shocks a day but constant pain all day long. It is so hard so see her sitting there in pain sitting there crying not know what to do for her. So how do you people that care for loved ones with TN deal? Also if anyone can recommend some good Dr anywhere on the east coast please let me know I am willing to drive anywhere I have too so I can get her some relief.
So sorry to hear this my husband as pain all day but gets about 20 to 30 attacks a day off really bad pain were he is crying even banging his head on the floor when the attack gos he feels so drained out and week . He just lays in bed . My husband as had T N for 3 years . We found that it starts October and lasts till February wen the weather gets milder it gets better . He as tried so many meds nothing asent worked we are going to see mr l Watkins at London uk on Tuesday opfully he will recommend radio surgery I hope your wife gets pain free soon god bless you’s
Hi Michael,
I'm very sorry to read of your wife's suffering and yours too, I know how difficult TN is for the loved ones. Your wife has gone through a lot of treatment and your doctor does not recommend another surgery at this time. Still, it may be worth checking out on a nerve stimulator (I'm not sure of its exact name), which gets implated under the skin...I think it's Lisa26, one of the members, who has it and she has a tough case of TN. I'm sorry I can't be of more help...this is just something that came into my mind as I was reading your story.
I hope your wife gets relief soon.
Take care,
Oldriska
Michael,
I would suggest that your wife be seen and evaluated by Dr. Jeff Brown, of Great Neck NY. He is a neurosurgeon and a member of the Medical Advisory Board of the TN Association. There are other physicians linked through the medical providers page at TNA, as well. We've connected to them at the top of the "Find a Doctor" page.
My instinct is that the avenue of approach which may offer the best chance of improvement for your wife is likely to be a second MVD. But you need to be professionally advised on timing and risks. Brown is competent to do that. If you consult with him, please tell him I sent you. There are other alternative providers up and down the East Coast, on our doctors' page as well.
That being said, I would also suggest that you find a local psychologist who is trained in counseling couples who are dealing with chronic pain issues. Here on the site, the most pertinent start in that direction might be offered in our article on "Coping With Crisis" under the Face Pain Info tab of our menus. Mental issues have not created your wife's pain, but depression and anxiety might make it worse.
For your own well being and that of your wife, be advised that I am not a medical doctor. My qualifications as a patient advocate are reviewed in the Face Pain Info tab, as I wrote that material.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
If you cannot get into Dr. Brown soon enough My second choice would be dr. Lim in Baltimore?
But my #1 choice is Dr. Ken Casey - he answers EMAIL !!! We emailed back and forth and then I flew from MO to MI --- he learned the MVD under the "inventor" of the MVD -- I would go to him for a second MVD in a heartbeat. He wrote one of the only books on TN - "Striking Back" which I hope you have or get.
Let us know what happens!
Oh Michael, I’m so sorry to hear of your wife’s struggles with TN.
I can only imagine how hard it is for you to watch her go through this. I know how hard it is for my husband when I’m at my worst. Helpless…But, by joining up on here you’re being proactive and hopefully you’ll gain a new direction that will be worth pursuing to help your wife.
Please email each specialist mentioned above, include your wife’s medical history in easy to read bullet format. Emphasize the urgency of your inquiry, no one should have to suffer as your wife surely does.
I will keep you and your wife in my prayers, for an end to her suffering. Wishing you strength in the days ahead.
(( hugs )) Mimi
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I have had bilateral TN 1 & 2 for two years. The ache is constant averaging an 8 and I have the electrical jabs. I had two MVD's and also think of myself as a difficult one. I am sensitive to TN drugs so I don't take any except for Nucynta for extreme days and use a compound cream daily. I have had to examine why the pain is worse on some days compared to others. Stress will send me into an attack of jabs. Humidity increases the ache. If you were my husband I would request this: Please do not ask me frequently 'what's your pain level?' It makes me think about it when I have been trying to block it. When I am in the car with you drive like you have a wedding cake and your grandma in the backseat. No jerky starts and stops and no road rage. I find riding in the car with you very stressful. It hurts me to talk. Please listen to my response so I don’t have to repeat myself.
I suggest you try to turn down the humidifier in your home in the winter and run the air in the summer. If you can manage a trip to the desert for even a week, go. I was able to spend 5 weeks in AZ this fall instead of being in Michigan. The ache went to an average of 5 and the jabs stopped while I was there. I could go outside without a hat or face covering and take a walk.
During my 2 years of TN I also had breast cancer, double mastectomy and chemo. These illnesses have changed our life plans. We won't have the retirement experience we planned on. I had to stop working early; he will be working longer to ensure we have good insurance coverage. I don't view this illness as an opportunity for me to sit back and dictate what he needs to do for me. It's my duty to effectively communicate to him my needs without belittling his efforts. It's my duty to realize that his pain is just as valid as mine and not to minimize his discomfort when he mentions a headache etc. It’s my duty to be the nicest person with a rare disease as I can possibly be and to be grateful for him and everyone that is concerned about my health. Thank you for supporting your wife. Your concern showed in your post
Hi Michael
I have undergone uncontrolled pain not responding to any medication. My condition was made worse by interference with trigeminal nerve with Alchohol injection which damaged the nerve & made condition worse with anasthesia dolorosa. Nothing would work to stop the pain. Finally a neuroctomy operation was performed with permanent relief from pain. But this also produced permanent numbness in one side of face. Which I have got used to it over a period of time. You should see the neurosurgeon Richard has sujjested & when u do see him. You may discuss thus option as a last resort for getting permanent lasting relief from pain.
wish u good luck.
Before I was diagnosed, I was getting probably 200-300 shocks a day. Basically every time I opened my mouth for anything. It was HORRIBLE! I got lucky and so far the Tegretol is keeping me pretty much under control. I don't know what you can do other than just take her to any good doc you can find that specializes in this and just BE there for her in any way you can. God bless you both!
I agree with Red, I also saw Dr. Brown and he was wonderful!! I have had an MVD two months ago and am pain free!! I also live in Delaware, not far from you and have found that the care here for TN SUCKS!! I have had nothing but bad luck with the doctors here. I also saw Dr. Lim at Hopkins , but he would not operate because I have ATN more than TN
Wendy
Richard A. "Red" Lawhern said:
Michael,
I would suggest that your wife be seen and evaluated by Dr. Jeff Brown, of Great Neck NY. He is a neurosurgeon and a member of the Medical Advisory Board of the TN Association. There are other physicians linked through the medical providers page at TNA, as well. We've connected to them at the top of the "Find a Doctor" page.
My instinct is that the avenue of approach which may offer the best chance of improvement for your wife is likely to be a second MVD. But you need to be professionally advised on timing and risks. Brown is competent to do that. If you consult with him, please tell him I sent you. There are other alternative providers up and down the East Coast, on our doctors' page as well.
That being said, I would also suggest that you find a local psychologist who is trained in counseling couples who are dealing with chronic pain issues. Here on the site, the most pertinent start in that direction might be offered in our article on "Coping With Crisis" under the Face Pain Info tab of our menus. Mental issues have not created your wife's pain, but depression and anxiety might make it worse.
For your own well being and that of your wife, be advised that I am not a medical doctor. My qualifications as a patient advocate are reviewed in the Face Pain Info tab, as I wrote that material.Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN