Letters

2020

July 23, 2020 - Kathy from Toronto

It's been a rough 8 weeks with TN. A face mask set my TN off. Now I have a face shield and it works great. My son has asthma and I bought him a shield as he can't wear a mask either. This is working well for him too. I hope this helps someone. Be safe everyone

~~~~

June 29, 2020 - Betty from Calgary

I have had great success in controlling the amount of pain I have with TN. Once I started the elimination of anything citrus - tomatoes, oranges etc. from my diet, the facial & jaw pain was tolerable & remissions frequent.

I have never felt the need to seek any further treatment other than Tegretol or Carbamazepine (whichever is available). I control the dosage & can get it down to zero during remissions. I was also told to be very cognizant of my pillow. It has to be firm & full & very supportive of my neck & head.

I don’t think it’s wise to depend on meds. for so many, many years but I didn’t like the alternatives. Thanks again for continuing to share TN.

In the meantime keep Safe, Healthy & Hopeful as we continue to fight Covid-19.

~~~~

April 30/20 Beverly (Vancouver Island)

Hi Jan, Just letting you know that I was finally able to find a doctor to do my MVD surgery on Vancouver Island in Victoria. I was really impressed with their Victoria General Hospital's Neurological Intensive Care. My surgeon was Dr. Ian Fleetwood at 695 Discovery Street was very kind and conscientious. I am happy to say that my surgery was done on Nov. 29th/19 and I have never had any pain since. Please pass this on . Thank you for your work. Mrs. Beverley Tate

~~~

April 18/20 Marion (Scarborough)

This came with her membership fee. I attend some meetings , then I had the Gamma Knife treatment which gave me wonderful relief and continues to do so. This was done at the Toronto Western Hospital. I now live in a Seniors residence in Scarborough. Good wishes in your work. Marion.

~~~

April 8/20 Phoebe (Calgary)

Thank you for your note re our meetings.. Right on for these stay home times! Nothing to report from me. Take care. Be in touch with family and friends. Great time to catch up on those "sort out ...tidy up jobs.. be touch online or by phone. Then there is reading.... or handicrafts...

Cheerio for now. Phoebe

~~~

April 8/20 Gloria (Calgary)

Hi Jan: It sounds like months before we are back to normal.

I have an MRI appointment on August 6 - my trigeminal nerve seems to be coming back to life. The pain is a fairly low intensity and it as evolved in the last four months of so. Lately, it has become a prickly pain in the lower part of the face and usually occurs in the evening. The teeth on my TN side ache most of the time, plus I still have the sensation of being frozen. Ah well, I guess it could be worse.

My daughter and I were supposed to fly to Venice on May 1. It looks like we'll be deferring that trip for a year! I'm grateful to still be working.

Take care, I hope you are well.

~~~

April 5/20 Amzad (White Rock)

Thank you very much for keeping up with updates and newly posted notes for the TN members group. I don’t think we will be meeting anytime soon in with our group given the current epidemic of COVID-19.

Currently my TN pain is much suppressed after my thermal rhizotomy by Dr. Honey back on April 13th 2018 and I am completely off the medication since then. I am hoping this state will continue for a few more years, much thanks to our White Rock Group.

The current concern is more to the COVID-19 situation and social isolation, however, I do find time every day to walk a few kilometers just to stay active and maintain some level of health since all the gyms are now closed. I hope the current situation will improve soon.

Again thank you very much for the updates. Regards, Amzad

~~~

March 31/20 Rose (Pickering, ON)

Hi Jan. Thank you for your support as always. Yes here in Pickering we have hunkered down now for over 2 weeks. A great time to purge'. Also a time to bake which I find relaxing - but flour is a hot item here! My neighbors, friends and family are wonderful grocery providers. I have never eaten so well - different and also yummy.

I'm conscious of being as relaxed as possible during these times. I take time to meditate each day and do tai chi - and weather permitting a neighbourhood walk. I also am phone calling friends - especially those who live alone. Also have reconnected with people I haven't chatted with in a while. Oh yes, and family showed me how to use whatsapp - so lots of connecting with people even though I've been home alone for a while.

All the while, I am very conscious that TN' is kept at bay - as much as I can....I thank God for every pain free day - even though there is a low level angst.

I do hope everyone is managing and that your pain - and flare ups are under control. The support of the group is wonderful. So nice to know there are people who understand this crazy affliction!

Again, thanks for all you do, Blessings to all,

~~~

Mar 31/20 - Alicia (Calgary)

Thank you Jan for your mail. I wish you Happy Easter and all the best.

~~~

Mar 17/20 Jan K. (Calgary)

I have been suffering with a bad back. Other than going to the chiropractor, I haven’t been out.

I never had any dental work done during the 18 months I had face pain. I have, however, had my dental work done now.

I am having trouble getting off my gabapentin. I was on 6 tegretol and 13 gabapentin. I went off the tegretol, one a week and had no trouble. I tried this with gabapentin and had severe withdrawal. I tried doing one every 2 weeks, and that didn’t work either. I am now doing one every 5 weeks and that seems to be working. Only 5 more to go. Hurray!

Stay home keep safe and hopefully we can all get together soon.

~~~

Mar 13/20 from Francis (calgary)

Hi Jan and group. Hope all are well. Had my radiation surgery treatment March 4th. All went well, six month waiting period before I can hopefully reduce meds. Stay well everyone.

~~~

March re Judy (Calgary): I just wanted to let everybody know that Judy Sanford is being able to reduce her pain down to a manageable two or three by taking a couple of Aleve pills which bring down her facial swelling. Perhaps this suggestion can bring someone else some relief. Take care, everyone.

~~~

Feb 19 from Dorothy

Enclosed is a check for a 3 yr membership in CaTNA. Although I've been pain-free since an MVD in 2003, I want to keep abreast of new insights. (great news Dorothy)

***

Feb 3, 2020 from Lyla (Alberta)

Thank you for all your help and support in sorting out my facial pain. I was able to get an MRI and see Dr. Garnette Sutherland at Foothills recently. I found him to be a very nice man but he couldn’t definitely see any impinged nerves but diagnosed Atypical Facial Pain?

So, the only thing he offered to perform was a V2 Neurolysis he said was mostly discontinued in the 1970’s that destroys the trigeminal nerve but I would be left with permanent numbness in my face and possible hearing loss from the surgery and other possible complications like a frozen face. Tegretol 200 mg twice a day for 4 days was tried in May 2019 by prescribed by an oral surgeon in Calgary but I was unable to function, let alone work and I still have red spots on my body from reacting to it. He did say lidocaine nerve blocks were helpful in the past, so I may want to try more of them as well.

So I decided to read more of the literature and came across information about B12 injections to help with nerve pain so had my GP prescribe a shot every two weeks and thus far I have only had one given by the pharmacist. I am hopeful that this will be of some help. I did see a periodontist here in Red Deer who was able to numb the pain with gentle needles to have the bone shaved at the extraction site to remove bone chunks and gum protrusions. This alone has left behind some of the awful pain so thank you again for pointing out that my issues appeared to involve both physical dental and nerve pain.

I have an appointment with a denturist next month for an all acrylic partial plate to put in the space (top right) as I now have four missing teeth there. Hopefully that will slow the bone loss down and give me back the ability to smile without feeling so self-conscious about it.

I have also listened on a podcast that specialist said :Atypical Facial Pain” is a waste diagnosis as it tells me nothing specifically? So I am still trying to sort out things, but feel I am at least moving to resolve the issue or at least help me better to cope.

***

Jan 26, 2020 To Charlee in White Rock, BC

Good afternoon Charlee,

Sue and I had the best hour and 1/2 we have had since Oct 2018. We are not just thrilled, you and your group (and be sure to let them know) lifted us out of a black hole. There is actually hope!!!!!

I have read every hand out you provided and the discussion with the group gave us extra content. As mentioned, Sue has not been served well by the Medical side. The MRI and Neurologist followup was useless. Her GP is OK with her pharma drugs, but after that, nothing but drugs for the rest of Sue's life. Quite a difference from you and the TN survivors at your table.

As you know, we have booked, a trip to Melbourne and a 13 day cruise of New Zealand. We will both read your copy of "Striking Back" cover to cover, over the course of this trip. What I find interesting is that 2004 is the latest edition. I have already started the preface and what a different book. It is refreshing and personal.

Thanks for keeping this association going, it is a god sent for us.

***

Feb 3, 2020 from Rick

FYI, My wife Renate has reduced the amount of carbs from her diet due to some research on this tactic to manage TN pain.. seems to work so far, last 2 weeks its noticeably less for her, but could be remission too or just coincidence.

But I wanted to share this intel with you nonetheless Perhaps you have crossed this tactic too in you travels ?

***

Feb 3, 2020 from Inge (Toronto)

I attended a few local support group meetings when first diagnosed many years ago but then I was caring for a husband with Alzheimer’s and no longer had the opportunity. My TN is fairly well under control with occasional flare-ups which are managed by my GP with medication. I am also on a maintenance dose.

As I said, I do go to the website and have occasionally responded to posts there. However I do not feel the need to attend support groups at this time.

I still get regular notifications from Kathy about meeting times and I suppose I could return if ever I felt the need.

I feel for those who are far worse off than I am and for whom even surgery has not always been successful. Fortunately we now have access to wonderful neurosurgeons who provide surgery right in Toronto. I remember when I was attending the support group, the only surgeon that seemed to be doing that was Dr. Kaufman in Calgary.

Keep up the good work. The website in particular is a great source of information and must be comfort to those suffering so severely.

***

January I am a member of Kathy Somer's group in North GTA. I am one of the lucky ones who was able to have an MVD by Dr. Tymienski at Toronto Western Hospital almost 4 years ago. He declared me "cured" and so far so good. I found the group experience very helpful especially in terms of hearing from others so afflicted. It felt like nobody could know except others who suffered. The biggest support I felt, still do, was the story of Dave who had had a successful surgery 20 years earlier in Winnipeg. His success carried me through the entire journey before and after the MVD.

Also, I am a great admirer of Kathy Somers herself who is such an example of strength and positivity who soldiers on for fellow sufferers despite her own health challenges. So, I thank you too for your time and efforts to maintain the association, the international information and connections, and for continuing the mission to bring awareness to TN. I just wanted to let you know that I for one am appreciative. --- Pat