Climbing Trigeminal

[dbobsnodgrass]

Subtitles: Including, but not limited to,
Amazing my Sherpas, Colorful Metaphors, Going Around, Camping...

I have experienced a "particularly refractory course" in treatments for right-sided TN1, starting with "TEN" reaction to Carbatrol - in March of 2007, when I stumbled upon our site.

My medical records, along with the combination of my dozens of PET Scans with CT and MRI, with LP's (lumbar puncture), the Myelogram was a nasty experience - well, the CD's in my possession show that I have left frontal sinus disease,...playing them destroyed my last computer:(

Jokes had all around in 2007, with my new best "specialist friends" at my local Elliot Health System, MGH, DHMC-Lebanon and others, as the left frontal sinus disease has nothing to do with what is happening at the base of my skull.

Up next, I was taking a shower the morning of September 16, 2006 and my LNA (Licensed Nursing Assistant) experience "kicked in", when around the shin area, my left varicose ruptured, and this also has nothing to do with what is happening at the base of my skull...

[dbobsnodgrass]

Subtitles:
Wishing this a was a novel...

I was 13 days shy of my 50th birthday, happily divorced, employed as a Licensed Nursing Assistant for NH Catholic Charities at a facility for **retired Priests, - - to be continued, later, perhaps - - **Adult Content Warning

I had just washed my face, when opening my eyes there was blood. Reaching for my nose, it wasn't my nose and the streaming shower was not rinsing the blood. A slight panic, then my right hand interrupted the spurting from my left shin.

Applying pressure with my left hand, I washed the shower and tub. Hobbling about the bathroom, I dried the area and when attempting to bandage, immediately the vanity, sink, and mirror were being sprayed with my blood.

Oh yeah, relax and apply pressure.

Next attempt was another failure, I grabbed the generic, or store-brand. Fortunately, I had and now I will only purchase a Johnson & Johnson BAND-AID - I am not a paid spokesperson.

Instead of going out for breakfast with my girlfriend, she took me to the ER; seems she was a little concerned about my ashen color, even though she was an RN.

The ER doctor packed the area with ALLEVYN, covered it with a Tegaderm, sent me home with TED stockings; referred to a Vascular specialist.

On November 16, 2006 I had a Phlebectomy along with the VNUS closure procedure. My next day at work, one week later was Thanksgiving, November 23, 2006.

Trigeminal Neuralgia would not happen until January 15, 2007.

So much for my preparations for "Climbing" Trigeminal

[dbobsnodgrass]

I was on lunch break, employed as an LNA at a nursing home, when on 01/15/07 at about 5:43 PM, I took a bite of a sandwich...

Dentist (speculated Bells Palsy) - Oral Surgeon - Neurologist - Neurosurgeon(s), see also; Medical Specialist Friends;)

I have had marvelous and caring healthcare professionals, from my local Elliot Health System, to Massachusetts General and Dartmouth Hitchcock Medical Center.

Adverse reaction (Toxic Epidermal Necrolysis) to Carbatrol.

Adverse reaction (Splotchy tongue, oral lichen planus) to Ativan.

Trigeminal Neuralgia has brought me many unique experiences (add all emoticons)! Trigeminal Neuralgia (TN1) has removed family, friends, work relationships and many parts of the essence of Bob.

This disease has introduced me to big words, strange terms, frightening and life threatening diagnoses. I can now pronounce Toxic Epidermal Necrolysis, Dysmetria/Bradykinesia, Cerebellar Ataxia...I could be a member of Dr. House's diagnostic team.

A very short conversation occurs when you tell someone you have a Brachial Lesion from Stereotactic Radiosurgery, or you've had a Transient Ischemic Attack.

Please, sit down if you haven't taken upwards of 51 pills a day.

Imagine the number of tests and procedures involved with 3 Brain Surgeries. As 'luck' would have it, they were not successful.

I have traveled from freedom and independence to assisted living. I have endured most everything that Trigeminal Neuralgia can "give" to an adult, which gives me time to reflect on children having this disorder.

I empathize with those considering the Rainbow Bridge, and have no patience for people that "think" they have TN.

Perhaps, in my case, TN 1 is part of the natural aging process, an inherited genetic disorder. When I said to my Neurologist, "This isn't funny anymore" - [after all the failed procedures, including the original 7-pad MVD] - his abstract was that in the waiting room, to my left was someone with MS, to my right was some with MD.

I am not a candidate for any further surgical procedures, including deep brain simulators (DBS). Trying to stay out of Zombie-Ville, as my many adverse reactions to Big Pharma's answers, help a little with that.

Currently taking Neurontin 1,200mg, Baclofen 40mg, Keppra 3,000mg, Vitamin D 3,000iu.

I still have a "toothache", but it's okay, as I have hope.

[geneo]

Bob my friend, I keep saying "It's the tight underware".

[joy]

double post

[joy]

bob makes my troubles with 5th and 8th nerves seem like a nice outing in the park. good to see a post by you though

[dbobsnodgrass]

Dear Friends and Readers,

My first Trigeminal support was a phone call to the TNA Facial Pain Association. They connected me with two women from New Hampshire, and I could not talk that well for long periods, though we did chat on and off for a couple of months.

At that time, I found their website confusing, so I joined forums with words only, late March of 2007, mainly staying here, at the BrainTalk Communities.

On October 30, 2008, Ben Munoz stated: "I suffered an AVM stroke in 2006 and understand how important emotional support is from people who understand what you are going through. I hope the site helps at least a few people. Ben Munoz, LivingwithTN.com"

My reply was, "I understand it is a starter site, but any assistance is useful to any and all of us. I joined and hope to be of some use or pick up a few pointers. This is my first site where I have found a wealth of information, a group of fine, respectful people whom I can call Friends and Family. I hope your site can be anywhere as hopeful and helpful as this one. bob"

Only registered and activated users can see links., Click Here To Register......

By November 2008, after the failed procedures and three (who's counting?) surgeries, joining as member number 8 at Living with TN, a little hard to find, as they were a (dot) org, not a (dot) com.

Anywho, I thanked Ben. Only registered and activated users can see links., Click Here To Register...

They asked me to be a Moderator, and on September 15, 2011, I was awarded a gift as "Ninja Moderator", being good at spotting SPAM, and such. Only registered and activated users can see links., Click Here To Register...

On December 26, 2011, I replied to the discussion - "Tic Douloureaux I H8 YOU !!!!" - with, "NOH8, it's just a tic:)" and was sworn at.

In December 2012, on the CLOSED MODERATORS GROUP, I mentioned to the founder that his oDesk Profile said, and still does, "closest to his heart is the least profitable". Case Study - Ben Munoz. Only registered and activated users can see links., Click Here To Register...

Shortly after, I was banned from the group.

True support isn't about gathering statistics, getting members, or "Google-hits".

I do not get paid by the word. bob:)

[joy]

i believe you know more about tn than most folks, unfortunately. take care and it is always good to see a post from you tho I hate that it keeps up being bad. makes me wonder how/why they would ban a knowledgeable person. their loss.. takes all kinds i guess..

[dbobsnodgrass]

Joy,

That's just an online support group, giving my cane to a 72-year-old woman with advanced OPMD, is my present.

I advocate for seniors in my, as MHRA states,”low income, elderly and peoples with disabilities”, as I reside at the 100 unit Kalivas hi-rise.

Not mentioned on their site, is that meals and housekeeping closed on February 29, 2012.

Only registered and activated users can see links., Click Here To Register...

I needed the meal part of that program for 2 of my nearly 4 years here. Taking 51 pills each day, I didn't trust Me around a stove - I placed milk in a cabinet and found cottage cheese on many occasions. If I couldn't sweep and wash my toilet, put me in a nursing home. Ten people from my hi rise relocated to nursing facilities last year.

The ONLY part of "congregate" replaced was the meals part, with Meals on Wheels, served by resident volunteers, serving 1 meal 5 days a week, holidays and snow days excluded, asking a $2.00 donation. As many as 11 residents eat, Meals on Wheels operates out of an MHRA building, and most of the CSP program food service managers and full time staff have retained positions within MHRA.

Unrelated to housing, maintaining the theme, since May 7, 2012, the Visiting Nurse Association has discontinued monthly blood pressure check-ups, and will not be giving free flu shots.

Being known as the "camera guy", sending photos and petitions to the City of Manchester, and the Housing Authority in hope of keeping this neighborhood a little safer, when realizing my neighborhood had more shopping carts than baby carriages, was so three years ago last May that I only noticed last May.

And Gene, I wear boxers, not briefs.

Trigeminally Yours, bob

[joy]

i have not been back on this part of forum, so sorry i have missed this. i hope you are putting up a good fight still with it all. i am so wimpy i will confess i can fall into complaining when our friend who is fighting terminal cancer now for almost 4 years is around. shameful of me. i must know that this is the place to do all that. neither her or her husband can work his is heart and they have not reached their 50's yet. aw yes now i remember, i was much younger myself when all this started.

bob you are an amazing man and i hate that some folks know all to much about this awful crainial suff. at times my whole head in back feels as if it is jumping outta my ski along with my face. what a sight we must be when all this hits.

[crysopac]

If it helps we still love you , bob. :)

Also on a unrelated note, Rae thought when she got her PET scan they were going to give her the perfect pet.