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Anyone taking care of an aging parent with trigeminal neuralgia? Trying to find something that will help my mom with this terrible, horrible pain that is keep her from eating, speaking and landing her in the nursing home.
My mom has had TN since she was in her 50s (over 30 years), with varying periods of remission. She was advised by a neighbor to have the surgery that snips the trigeminal nerve (he also had TN and said it was the best thing he'd ever done), but she would never consider that option. Now there are so many different options, all with varying degrees of results - even good results not being permanent in many cases. I just don't think enough is really understood about the condition, but it is obviously one of the most horrible afflictions ever (hence dubbed "the suicide disease"). A couple of years ago, mom had the worst case ever of her pain - intense and unrelenting to the point that she could not talk, eat, or drink and had to be on IV fluids, and some serious pain meds including a pain patch. Ultimately she was given a nerve block shot in her face.. That calmed it down gradually, then she seemed to have sufficient releif from it for a significant period, though it was also the beginning of serious decline into dementia. (I feel that she was out of her mind with pain, and never came back to it.) Recently the pain has returned, but the dementia has put a different spin on it - surprisingly in a beneficial way. At least with brief attacks that pass. However, this morning she is in intense pain that won't seem to pass and I fear another major upheaval is iminent. Prayers requested and gratefully accepted...
My wife is 26 and suffers from Trigeminal Neuralgia. None of her 4 surgeries have been succesful and she still suffers daily. She has found some comfort with a Ketamine compound her surgeon prescribed her. I know that it is late, but I hope that this helps.
No, it was not shingles, the doctor looked at it and said it was a reaction from the novcation from the shot. I just felt like it had to be looked at, it was a nice try, but the pain came back with a vengence. Her pain medications were increased and the pain is much better now, but she is sleeping a lot now, the medication makes her sleep a lot and can't stay awake very long. She begged me yesterday to have the medications withdrawn becauss she was embarrased about falling asleep during the activities at the nursing home and discussed it with the doctor, but evidently she was waking up in the night screaming in pain and they had to do something to stop it and she was losing weight from not being able to eat. I told her it is either have #10 pain or having the medications, so she agreed to stay on them. I do not know if they are going to try any more shots, seems like the shots make it worse. Next step would be gamma knife surgery, but it will have to wait until spring when the weather gets better as we are into snow and below zero cold now in North Dakota and she would have to travel out of town. I wish we had a good neurologist here in Jamestown, seems like all the specialists are out of town.
Mom now has a rash on the same side of her face where she has the pain, something really weird is going on and now she has the pain all the time. I will have to call and have the nursing home set up a doctor appointment. Sometimes shingles causes TN and she says her mouth feels like it has a lot of sores in it. She has had shingles before and maybe it has come back.
that's just terrible and I hope she can get that surgery right away....it's literally a "life saver"....I can't imagine enduring that pain especially at that age. I wish you all the best.
Perhaps you can check out the trigeminal neuralgia association and look at other treatment options besides gamma ray. Here is their link http://www.fpa-support.org/aboutfp/index.html
Mom has a bruise all over the right side of her face now, still having the same pain, even more intense, cannot hardly eat and having trouble talking. We may have to investigate the gamma knife surgery next, but they can't do that for a few more months after this injection heals up and the bruise goes away. It is really hard for her to accept the help in the nursing home, trying to get me to take her back again and only wanting me to help her 24/7 again, had not even asked for an ice pack until I came late in the afternoon. She wants out of the nursing home so bad she is trying to do everything herself and not ringing for help when she needs it.
It's not that invasive of surgery, I actually documented her case on my website last year. She was awake for the whole procedure. The "invasive" part was screwing the head gear to the sides of her head.
Mom had her shot yesterday. We do not know yet if it will take away the pain. The doctor did say that gamma knife surgery will be the next option, but it is major surgery and that might be risky with her congestive heart failure, but every time she has a shot there is some risk when they gave her anesthetic. We will have to see, it might take a few weeks to know if the shot has really worked. Trouble with the shots it that they only last a few months and then you have to go back. Having gamma knife surgery is a permanent relief from TN pain. It is really mom's decision, she is the one that has to live with this horrible pain.
Thanks for your response. We pretty much withdrew all medications while she was in the hospital, and she still had the pain. She takes three different medications for the neuralgia, all of them together cause drowsiness and confusion and dizziness, but they do help to control some of the worst pain. I am hoping that this shot they are giving her tommorow will work.
Have all of her medications been looked at? My dad had this as a side effect of a medication. It was horrible. I'm just throwing this out as something that always needs to be considered.
I remember his pain and our helplessness. If there are others on the site who have seen this, I hope they can give you some comfort. Carol
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
A couple of years ago, mom had the worst case ever of her pain - intense and unrelenting to the point that she could not talk, eat, or drink and had to be on IV fluids, and some serious pain meds including a pain patch. Ultimately she was given a nerve block shot in her face.. That calmed it down gradually, then she seemed to have sufficient releif from it for a significant period, though it was also the beginning of serious decline into dementia. (I feel that she was out of her mind with pain, and never came back to it.)
Recently the pain has returned, but the dementia has put a different spin on it - surprisingly in a beneficial way. At least with brief attacks that pass. However, this morning she is in intense pain that won't seem to pass and I fear another major upheaval is iminent. Prayers requested and gratefully accepted...
keep us posed.
Carol
Perhaps you can check out the trigeminal neuralgia association and look at other treatment options besides gamma ray. Here is their link http://www.fpa-support.org/aboutfp/index.html
If medication does not work, there are surgical options.
We are thinking of you.
Carol
I remember his pain and our helplessness. If there are others on the site who have seen this, I hope they can give you some comfort.
Carol