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Old 03-19-2019, 05:24 AM   #1
kmajofsky
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Default My TN diary

A week before surgery:

A week before surgery and I am feeling no pain. Makes me think about canceling this surgery I have spent the last 4 months researching and scheduling consults, etc. There will be pain after they drill and chisel off a piece of my skull plate and get the brain fluid to drain. I watch a lot of surgery shows, love when they expose whatís under the skin, such a jumble although I could see more order there if I had lots of training. When I think of it being done to me, I flash back to Anthropology classes where I learned Ďsurgeonsí removed pieces of skull and then more pieces of some area of the brain, then the skull piece was sewn back to where it was. Then everyone prayed. The photos of the excavated and operated on skulls show big coarse Frankenstein stitches. The only anesthesia used was marijuana. Shocking and unbelievable especially when they say what people are smoking now is so much stronger than it was then. If thatís the case, there must have been a pain threshold scale up to 60 or even a hundred. Hard to believe.

My incision will be not worth mentioning and the stitches will be delicate, soon to be covered by my hair. No metal plate, just me being put back together. It doesnít stop the Anthropology textbook or the Frankenstein movie images I have in mind but it is only a week before. I have plenty of time to replace those unpleasant thoughts. Oh, and those thoughts of paralysis, deafness, facial numbness, TN pain still.

Sometimes I donít think Iím in pain, but I know my tolerance has increased over the last few years, so maybe I am. My pain scale has morphed, more evident by mood. I go for days in a dark mood, feeling the electricity in my left cheek. The rubber band stretch and twist from my left cheek to my left temple. The temple/jaw pain is new in the last 3 months. Eye spasms; actually not painful since the electricity only lasts a few seconds (unlike cheek to ear, cattle prod sensations, a prolonged torture) but scaryÖa true tic. Severe but brief. Sometimes the left eye closes rapidly rapidly. Little bolts zapping. Well.

To wrap around to the very first sentence, I have not had any pain today. 75 mg of baclofen , down from 90mg, and 600 mg of oxcarbazepine, down from 1200 mg. 4 months ago. Some pain but not enough to make me not want to do the dishes. I can do something today.

Still way too many meds and my arms are aching just keying these words. I canít do more than 2 hours of physical labor before my biceps, triceps, calf muscles just throb, get fatigued. My sodium levels dropped so low last July (it is early March the next year) I was hospitalized for 3 days. I get crazy dizzy if I move suddenly, up and or down. So tired most of the time. Spring is coming, have to get better. I am used to working 5-7 hours in the garden with a mild tiredness resulting. This feeling of not being able to move is creepy.

After 2 years of severe Trigeminal neuralgia pain, chewing on the opposite side of my face, the right side, has created a new issue. Itís just not ďTMJĒ. If I sleep on my left side Ė it does not bother the TN Ė my right jaw becomes dislocated and then it is 2 days of pain aheadÖmassage, heat and liquor help to relax it and get it back to where it should be. If I sleep on the right side, the same thing happens. So I sleep on my back since that is the least painful. Not long, though. The most has been 6 uninterrupted blissful hours. Then I get up stretch, find the couch, another bed, get propped up, find a cover, get another hour. Those years of using one side over the other, was the only way out at the time but now feels just wrong. Hurts.

I have vague memories of the way it was before Trigeminal Neuralgia found me, 6 years ago. But the last 6 years have been something I want to close my eyes to. I am older now. I have other ďage relatedĒ so they say issues. What if I come out on the other side all good and I find out Iím pain free but my age has debilitated me? What if itís not the TN. Oh crap!!!!!!!! You just canít pinpoint stuff sometimes. I can only meet myself on the other side of this surgery and hope itís what they say it is.
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Old 03-19-2019, 04:16 PM   #2
kiwi33
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Hi kmajofsky

Welcome to NeuroTalk .

I hope that all goes well with your surgery.

Best wishes.
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Old 03-19-2019, 07:02 PM   #3
kmajofsky
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Thank you! Surgery did go well. Having difficulty posting the rest of my diary
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Old 03-19-2019, 07:33 PM   #4
kmajofsky
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Quote:
Originally Posted by kiwi33 View Post
Hi kmajofsky

Welcome to NeuroTalk .

I hope that all goes well with your surgery.

Best wishes.
Quote:
Originally Posted by kmajofsky View Post
A week before surgery:

A week before surgery and I am feeling no pain. Makes me think about canceling this surgery I have spent the last 4 months researching and scheduling consults, etc. There will be pain after they drill and chisel off a piece of my skull plate and get the brain fluid to drain. I watch a lot of surgery shows, love when they expose whatís under the skin, such a jumble although I could see more order there if I had lots of training. When I think of it being done to me, I flash back to Anthropology classes where I learned Ďsurgeonsí removed pieces of skull and then more pieces of some area of the brain, then the skull piece was sewn back to where it was. Then everyone prayed. The photos of the excavated and operated on skulls show big coarse Frankenstein stitches. The only anesthesia used was marijuana. Shocking and unbelievable especially when they say what people are smoking now is so much stronger than it was then. If thatís the case, there must have been a pain threshold scale up to 60 or even a hundred. Hard to believe.

My incision will be not worth mentioning and the stitches will be delicate, soon to be covered by my hair. No metal plate, just me being put back together. It doesnít stop the Anthropology textbook or the Frankenstein movie images I have in mind but it is only a week before. I have plenty of time to replace those unpleasant thoughts. Oh, and those thoughts of paralysis, deafness, facial numbness, TN pain still.

Sometimes I donít think Iím in pain, but I know my tolerance has increased over the last few years, so maybe I am. My pain scale has morphed, more evident by mood. I go for days in a dark mood, feeling the electricity in my left cheek. The rubber band stretch and twist from my left cheek to my left temple. The temple/jaw pain is new in the last 3 months. Eye spasms; actually not painful since the electricity only lasts a few seconds (unlike cheek to ear, cattle prod sensations, a prolonged torture) but scaryÖa true tic. Severe but brief. Sometimes the left eye closes rapidly rapidly. Little bolts zapping. Well.

To wrap around to the very first sentence, I have not had any pain today. 75 mg of baclofen , down from 90mg, and 600 mg of oxcarbazepine, down from 1200 mg. 4 months ago. Some pain but not enough to make me not want to do the dishes. I can do something today.

Still way too many meds and my arms are aching just keying these words. I canít do more than 2 hours of physical labor before my biceps, triceps, calf muscles just throb, get fatigued. My sodium levels dropped so low last July (it is early March the next year) I was hospitalized for 3 days. I get crazy dizzy if I move suddenly, up and or down. So tired most of the time. Spring is coming, have to get better. I am used to working 5-7 hours in the garden with a mild tiredness resulting. This feeling of not being able to move is creepy.

After 2 years of severe Trigeminal neuralgia pain, chewing on the opposite side of my face, the right side, has created a new issue. Itís just not ďTMJĒ. If I sleep on my left side Ė it does not bother the TN Ė my right jaw becomes dislocated and then it is 2 days of pain aheadÖmassage, heat and liquor help to relax it and get it back to where it should be. If I sleep on the right side, the same thing happens. So I sleep on my back since that is the least painful. Not long, though. The most has been 6 uninterrupted blissful hours. Then I get up stretch, find the couch, another bed, get propped up, find a cover, get another hour. Those years of using one side over the other, was the only way out at the time but now feels just wrong. Hurts.

I have vague memories of the way it was before Trigeminal Neuralgia found me, 6 years ago. But the last 6 years have been something I want to close my eyes to. I am older now. I have other ďage relatedĒ so they say issues. What if I come out on the other side all good and I find out Iím pain free but my age has debilitated me? What if itís not the TN. Oh crap!!!!!!!! You just canít pinpoint stuff sometimes. I can only meet myself on the other side of this surgery and hope itís what they say it is.
The day before surgery, Sunday:

Have to get an MRI before surgery. I fear this more than surgery. Itís not the confinement, it is the loud noises. Makes the TN worse, or maybe itís the stress of the noise, I canít tell. I swear I feel vibrations on the TN side. The techs were so accommodating! They stuck foam plugs in my ears and then packed them with gauze. Problem solved. Feeling positive.

The day of surgery Monday:

I had surgery on Monday afternoon. I woke up Monday night in pain, of course. But the dizziness I was not prepared for - not just dizziness but full blown vertigo. Could not open my eyes without seeing and feeling the room spinning around me. So grateful my husband was with me. I threw up water. I retched the second the saline flush entered by body. Sheer misery although an army of medical folks kept coming in and telling me it went great, and I was just fine. They checked my vital signs, then checked their checklists. Asked my pain level with the smiley faces pasted on the wall as a guide about a hundred times. Hate that stuff. Grrrr. The pain management team came in to assess my progress and changed my pain meds, and corrected the dosage of my Trigeminal meds. They werenít giving me my full dosage for some reason although the list of my meds was written down at least 4 times, including a list I provided. I mentioned it. They corrected it. Be your own advocate and watch what they do or have a family member do that. Even great medical teams mess up. They did. But only for a day. The good news is that my brain is working. I feel like me. I can think. I can talk. I am aware enough to ask questions, check up on them. Pretty remarkable that I am intact. Happy about that.

The day after, Tuesday :

My surgeon visited me, said the big old artery pressing on the nerve has been cushioned, a success. Oh and it will take up to a year for the nerve sheathing to grow back. I may have that old familiar pain. So far, my left cheek feels swollen and sore, pressure there. No burning, no shocks though. Tried to eat. I had 2 sips of coffee, threw up. Had a saltine cracker. Threw up. So many meds. Canít open my eyes to the spinning carousel of the room.

Wednesday:

I was discharged on Wednesday morning but I couldnít get out of bed until 3:30. Physical therapists came in to test my stability and helped me to learn how to walk through the dizziness. (Keep head erect, focus on a point in the distance. Turn with your entire body. Donít look down.) Turns out they diagnosed a preexisting condition of dizziness that I was aware of but thought stemmed from the meds I was taking. They asked me if I had a cane, a walker, steps to climb at home. I was not prepared for that. The area around my eyes are bruised, I suppose from the tape they used to keep my eyes closed during surgery. Another thin vertical bruise runs from my left temple to my chin. My hair is full of surgical glue and some spots of dried blood. My hearing and sinuses seem better than before the surgery. My dry eyes are no longer dry.

They gave me nausea meds so I could make the hour long ride home on the interstate. My husband drove and was kind enough to stay in one lane most of the way to ease the dizziness.

My hospital experience was the best, private room, very, very quiet. The staff, all the staff, were attentive, not a mean bone or impatient tone from anyone. Everyone there was concerned about me, but home is better than there. Still not eating. Room spins stopped, now it was my motion and not the room, that caused the vertigo. Had a cracker. Had some water. Stopped vomiting. Progress. Taking the opioid for pain but using Tylenol more since I am afraid of addiction. So good to be home. My sister and brother-in-law house/animal sat for us during our time away and it was so nice to come back to an orderly house and flowers in vases, and familiar loving faces.

Thursday:

My sister and brother-in-law left and a good friend came to take over. My husband was exhausted from the hospital stay, sleeping on a fold out chair in my room for those days, and he needed sleep and a break from the stress. Donít expect one person to do all the fetching, fluffing pillows, cooking, helping with meds, being a human walker. Get more back-up. Finally felt well enough to eat solid food (oatmeal). Started on the miralax.
Had to break the left arm off my reading glasses because my head is so swollen. Canít read though, everything jiggles and moves around. If you like reading, this is quite an annoyance. Even glancing at TV makes my head ache and my eyes jiggle. Using a cane, I started making my way around the house with the additional support of furniture, walls, people, whatever was handy. Still incredibly dizzy.

Friday and Saturday after surgery:
Tremendous headache. A Jekyll and Hyde head. One side ok, the other distended like a too full balloon filled with mush. Someone or something has reached into the brain mush grabbed hold and twisted it, then started hammering. Sleeping 5-6 hours, not enough. I couldnít focus enough to read, but sent a few texts to family. Tried to get the glue out of my hair left by the surgery prep by dabbing a wet washcloth and then separating the strands. Lost a lot of hair doing that. Who cares, maybe Iíll be able to bend over enough to wash it soon (use baby shampoo they say.) they said I could wash my hair 2 days after surgery but I can barely stand to touch my head. Took a sponge bath on Friday. Too dizzy for a shower. Been eating solid food for 3 days, but no movement toward elimination of such. Not used to this. Broccoli 3 days in a row has not made an impact. But I am not throwing up. Progress.

Sunday, 6 days after surgery:

STILL dizzy, have the unrelenting headache and my neck is stiff and sore. Come on now, itís getting to be a worrisome thing. No one told me about this. Did they? Was I listening if they did? The time before surgery is so filled with fear, worry, and jumbled thoughts, I canít remember. I know it wasnít on the list of things for me to worry about. I read other TN patientís journal and donít remember others having these symptoms. Woke up with pain in my TN cheek. NO!!! Little firings of electricity. Went back to the opioid for some relief. But it does make you more dizzy. I am taking dilaudid, Ĺ capusule this morning, maybe another half this afternoon. I am focused enough to write this journal, first time since surgery. Progress and wonderfully distracting.

Did I prepare enough?

I thought I was thorough in my preparation for surgery, but I wasnít.

1. I had cataract surgery in October and have been dealing with chronic dry eye and disappointing vision in the right eye. I developed a sensitivity to the steroids and eye drops. Once they switched me to a preservative free eye-drop, things got better. Still, I asked my husband to be ready to dump drops in after surgery. Turned out not to be a problem. Check that fear off the list.

2. The first MRI showed chronic sinus disease so I went to my ENT to get cleared. I take loratadine every day. I have swelling in the back of my head and neck every morning and I self massage to get the sinuses to drain. I did this while I was waiting for surgery. It worked. I had no trouble breathing when I came out of anesthesia. Check another fear off the list.

3. My surgery was in the afternoon so I had some fear of being parched and dry mouthed after withholding liquid for 12 hours. Didnít happen. I was parched after surgery since they put a breathing tube down my throat but I had ice water and a swab I could use to get moisture in my mouth. Check that off too.

4. I went to the dentist and got through that check-up and cleaning. It usually takes 4 days for my TN to recover from that. Another check.

5. The other possible results that I worried about since I have become a ďslow healerĒ, muffled hearing, facial paralysis, slurred speech, and other scary results, never happened. Whew!

6. I wasnít prepared for and probably couldnít be, but it would have been nice to know ahead of surgery: Neck pain. My head and neck was positioned to the right side for hours during the procedure and that caused a lot of post surgery pain. After 5 days though I am starting to feel better but I am still swollen and bruised. This will pass. It is better than it was. Check. But, it was only on the day of surgery that I was asked (twice) if I had chronic neck pain. It was the anesthesiologists who finally told me what to expect. Maybe they donít want you to know about this beforehand because of the worry/anxiety factor since there isnít anything you can do to prevent it, but I felt blindsided by it.

7. The final issue and the most important for me, was and continues to be the dizziness. I should have gone for vestibular therapy, where the crystals in the ear are rebalanced. I think that would have made a huge difference in my recovery. I will get therapy as soon as my neck pain allows for it.

8 days after surgery, Tuesday:

I can get up and out of bed by myself with my cane and by using walls and furniture as support. I actually made coffee. Major accomplishment. Still have a headache; feels like a rubber band getting pulled tight around my head. My head is painful but numb. Strange feeling. Things are better but have to mention that opioids do not like me. Even .5 of a tablet sent me into nightmares and hallucinations. I was taking a maximum of 1.5 per day and alternating it with Tylenol for pain, but today I will only use Tylenol. Another issue I need to mention is the lack of movement in waste elimination. A week now and still nothing productive worth mentioning. Colace and a miralax cocktails (with orange juice) for the last 4 days since I began solid food and I am still unproductive. Not even a bowl of stewed prunes for the last 2 days helps. Not painful though. Reducing food intake today. We shall see what the day brings.

Later this day: Hooray! I have turned the corner. Headache is very manageable, dizziness has subsided, washed my hair, starting acting more like myself. Feeling better!!!
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Old 04-01-2019, 11:24 AM   #5
kmajofsky
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Default 3 weeks after MVD

What a difference a little brain surgery makes! I am still getting the tingling feeling in my left jaw and the burning sensation but only occasionally. Reduced my Baclofen to 65mg and oxcarbazepine to 450mg and will continue over the next few weeks. Just reducing these meds is having an positive effect; Iím not getting the deep pains in my muscles that I was when I was at 90mg baclofen and 1200mg of oxcarbazepine.

My head is still so sore and feels bruised, and it occasionally aches, but that is manageable. Dizziness is still a problem but I can walk without a cane. I started vestibular therapy for it and will need to go for a few more weeks. Turns out the therapist can also help with my TMJ. Jackpot!

I easily get fatigued easily and sleep more than Iím used to. Havenít got my strength back yet although I am able to do more, including a few hours weeding and cultivating in the garden. Itís been only 3 weeks, and I am surprised to be feeling as pain free as I am.
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