LostSapphire: sending out love, dust, prayers and support to you!!!

[Pandora II]

Date: 11/30/2008 8:14:08 PM
Author: LostSapphire

Thank you Pandora, for taking the time to post what you did. I am so sorry to hear of the pain you have in your legs. Hopefully, one day the herniated discs can be dealt with surgically....is there a possibility of having that fixed after your baby is delivered?

The first tumor I had 15 years ago WAS an acoustic neuroma. You''re right, pretty scary, but at least one gets confirmation that one has a brain. And I know because I''ve seen it!

The Trigeminal Neuroma is considered secondary to something else. We''ve ruled out the AN on the left side of my brain (1st one was on the right), and a tumor on the balance nerve. So they''re trying to find it on the trigeminal nerve, and are having some difficulty.

There is the possibility of surgery to block the nerve completely. It is almost the same as the surgery I had for the AN, except instead of removing a tumor, they put in a gortex pad to block the nerve endings.

The pain is absolutely debilitating. The neurosurgeons are concerned that at 800mg of Tegratol, my side affects are already problematic: the biggest one is my difficulty in ''finding words'' lately. I feel so STUPID. Also, the pain breaks through anyways, but it is at least within somewhat tolerable limits if I lay down and get my heart rate slowed up. I am still working but after 4 weeks on the tegratol I am finding more and more errors in my work. So this is not an option for a long term fix. My family doctor wants to try something different but the neurosurgeon wants me to stay on the tegratol for a while. And considering he''s one of the best in the country, I''m deferring to his opinion.

So we hang in there and put up XMAS lights to keep my brain occupied...that, and online shopping.....

LS

Hi LS,

They won''t operate on me again for at least 15 years - my neurosurgeon is one of the pioneers of artificial discs and wants to do those, but I''m considered too young at 36 - so we wait till I''m 50...

I''ve had 4 lots of surgery already - including major surgery where they took bone away from my spine. I got about 50% improvement from that surgery and can walk properly now, but the pain remained.

I''ve been lucky and found a cocktail of drugs that I can stay on long-term (and pregnant) and don''t give me side-effect problems.

When I had the Tegretol I was incapable of finding words - it was quite hard to have intelligent conversations at all at times. It hugely effected my whole life and I took myself off it. They kept telling me the side-effects would go away - hmmmm....

Really talk to your neuro about the meds. When I told mine about the Lamictal his reaction was - oh yes, that one is supposed to work really well for some people. I wonder why I didn''t think of it...

Mind you, neither did 3 separate pain specialists. Took me and my psychiatrist to find the stuff. Now of course they are all duh, why didn''t we think of that one.

I hope they find the cause for you - and it''s fixable. Chronic pain is miserable making and very hard for people to understand if they haven''t been there.

 

[laurel25]

Hey LS - just wanted to tell you that you''ve been in my thoughts & prayers since the post over in Colored Stones. I really hope they are able to get you an appointment before Christmas and somehow your pain can be lessened. In the meantime, here''s some ice cream!

 

[princesss]

Date: 12/2/2008 9:51:12 PM
Author: LostSapphire

Date: 12/2/2008 9:40:28 PM

Author: princesss

Date: 11/30/2008 8:20:30 PM

Author: LostSapphire

It''s just that I don''t know how many miracles one person gets in their lifetime.


LS

I know the answer to this one.


Lots.


LS, we get many miracles in our lifetime, big ones and little ones. Maybe I''m inclined to see miracles in things that others don''t, but I believe once you''ve experienced one, you''re opened up to more because you know they''re out there and you''re willing to accept them.


At 17 I was diagnosed with a heart condition that is found most frequently in 50+ year old men on autopsy. It was a miracle I even noticed the symptoms, and I will swear to this day that my math teacher saved my life. After about 5 years of treatment, I have been told that if I take care of myself, I could be symptom free in 10 years. Truly a miracle. Now, at 22, I''ve been seeing a pulmonologist due to trouble breathing, and found out that the answer to my troubles could be as simple as losing the weight I gained in school. And if it''s not that simple, I have a doctor willing to accept that his theory was wrong, and who will go after the problem and examine every nook and cranny of my heart and lungs until we have an answer. Simple enough, but to me, it''s a miracle. I''ll have my life back.


Miracles happen, and lots of them can happen in your life. Really and truly.

Thank you Princess.


I am so pleased for you, that you have been diagnosed appropriately (so far!) and that you are on the receiving end of miracles. And I agree, that once a person is open to them, they just show up. ''expect a miracle'' has been my mantra for 25 years now.


It''s just getting a little tiresome to ask: ''ok God, do ya have one more in your bag of tricks for me?''.


Iit currently takes a forklift to retrieve my medical file from storage at the Dr.''s office. Chapter and verse of the many medical issues would bore you all to death. I''m just starting to think that I''m running out of miracles............like cats who have 9 lives: what happens at 10??


Sorry, I get like this when the pain is unbearable. Today has been hard to take. So I went out and bought a bunch of XMAS lights and am trying to feel better.

<<<< this is my face, gettin'' a bit of a palsy right now on one side.


Maybe it''s a sinus infection! (just trying to find the humour in this mess! it''s NOT)


Thank you all for listening. I appreciate having a place to whine.............

LS

It''s a scary thing, for sure, LS. I can''t even begin to relate, but we are here to listen. *hug* As for what happens when you reach that last miracle? I keep hoping miracles are like love: always there when you need them, one of life''s (very few) constants.

 

[FrekeChild]

Hey princesss...do you think you could manage to send one of those miracles my way? I could really use one right now.

 

[Dreamgirl]

I have no idea how I missed this thread. I'm so sorry. We are all here for you LS. *HUGS* I hope everything will work out for the best very very soon.

 

[princesss]

Of course, Freke. Lots of miracles and love headed your way (extra hugs for your mom).

 

[LostSapphire]

Hey Pandora

Question for you - I have one of the following 2 situations: #1 pain is somewhat moderated, but I'm stupid, can't find words, losing my balance. #2, pain is excruciating but brain is clear and word finding, balance are all normal. I have been on the same level of tegratol for 2+ weeks now and nothing else has changed in my situation.

The pain for the past 3 days is beyond belief. I drove home from work tonight crying and WISHING FOR BRAIN SURGERY. Geez, how bad is that? I know it's the pain that makes me uber-emotional but I can't get a handle on it. I have an extremely high stress job and the minute I'm in a meeting or a stressful situation, or, when my heart rate goes up, my face starts screaming.

No word yet on next appt with neurosurgeon. I called them yesterday and apparently my file is 'in transcription'. ie: the first surgeon has dictated the referral to the next guy, but it's not yet typed and dealt with. DAMMIT can't they just pick up the phone and make the darn appointment?

...breathe....breathe...eat that ice cream posted by Laurel (thank you Laurel, it helps alot).

LS

And thank you ALL for your kindness. It is helping get through the days.

 

[katica]

LS,
I am sorry to hear about your struggles. I will pray for you tonight.

 

[Kaleigh]

LostSapphire,
I am just learning of this now. Oh MY, my heart goes out to you, and am praying that you get in before Christmas. I am so sorry for your pain. I don''t know much about tumors, always hated the word tumor too. I am thinking good thoughts, sending positive vibes your way as well as prayers. HUGS!!!!!

 

[Jewels305]

Hi LS-

I am so sorry about all you are dealing with and going through right now. I hope the appointment is scheduled soon so that you can figure out the next step. Please know that you are in my thoughts and I wish you the very best.

 

[Skippy123]

LostSappire, I have come to know you and adore you here on PS; I am so sorry you are going through this. My strongest prayers and thoughts outgoing for you and a giant hug.

 

[Gailey]

LS, I am only just reading this thread this evening. Way too old to read the LIW thread!

I am so sorry for your pain. I wish I could suggest something that would give you some relief. I''m guessing you have run the gammut of things like tens machines and accupuncture etc. I feel silly even mentioning it because I''m sure if it were that simple you would have tried it already.

I have problems sleeping, so quite often I lurk about these threads at night, so any time you want to kick scream or moan, I''ll be around to listen to you.

If Calgary has ever has anything to offer you in the way of investigation or treatment, I can provide a roof, a car or just a shoulder.

Stay strong

All my very best wishes and prayers to you.

 

[LostSapphire]

Good morning.

My positive affirmation for today is to try and stay calm when the pain is screaming.

Let's see how that goes.......if that fails we'll go for chocolate.

Hope you all have a good day.

LS

 

[Ellen]

LS, I totally did not see this til now. I am so sorry. Will send good thoughts and prayers your way. Hang in there.

And if it were me, I''d be on the phone demanding an appt., explaining just how much pain you''re in. This is no time to be shy.

 

[Tacori E-ring]

LS, I just saw this now. I just wanted to let you know my thoughts are with you during this difficult time. Sorry you are in such pain!

 

[Selkie]

LostSapphire, I haven''t been around much so I just saw this. I''m so sorry about the recurrence, but I am glad to see you are keeping your feisty sense of humor even when the pain and distress are so bad. Keep up the good fight. You''ve got a lot of people pulling for you here.

 

[Pandora II]

Date: 12/3/2008 9:13:51 PM
Author: LostSapphire
Hey Pandora

Question for you - I have one of the following 2 situations: #1 pain is somewhat moderated, but I''m stupid, can''t find words, losing my balance. #2, pain is excruciating but brain is clear and word finding, balance are all normal. I have been on the same level of tegratol for 2+ weeks now and nothing else has changed in my situation.

The pain for the past 3 days is beyond belief. I drove home from work tonight crying and WISHING FOR BRAIN SURGERY. Geez, how bad is that? I know it''s the pain that makes me uber-emotional but I can''t get a handle on it. I have an extremely high stress job and the minute I''m in a meeting or a stressful situation, or, when my heart rate goes up, my face starts screaming.

No word yet on next appt with neurosurgeon. I called them yesterday and apparently my file is ''in transcription''. ie: the first surgeon has dictated the referral to the next guy, but it''s not yet typed and dealt with. DAMMIT can''t they just pick up the phone and make the darn appointment?

...breathe....breathe...eat that ice cream posted by Laurel (thank you Laurel, it helps alot).

LS

And thank you ALL for your kindness. It is helping get through the days.

Can I hazard a guess that you get situation #1 about an hour after you take your meds and for the first 4-7 days after titrating up. Situation #2 is when you are due a new dose and becomes the dominant situation the longer you are on any one dose?

I so feel for you - it''s like trying to live with the worst toothache/migraine you can imagine, only it doesn''t go away. I find I can concentrate on things for about 15-20 seconds at a time when mine is bad. I have to keep moving position and I can''t lie down, sit down, stand or anything so I just hop about the place. I have often said that if I knew it would take the pain away I would willingly amputate my legs - geez, I''d do it myself if I had to!

Normally I take an extra 60mg codeine and add 10mg of amitriptyline when things are REALLY bad and although I probably can''t talk any sense at that point, I don''t care either!

Amitriptyline is well worth a shot as well - it often works well on nerve pain. But only try 10mg as it knocks you out in a big way to start with.

Can your neuro send you to a good pain specialist? There are a lot of options out there. I truly believe that there is no reason why someone should live with appalling pain.

My mother has MS and often gets TN as part of an attack. Her last attack was so bad they put her on a syringe driver of diamorphine for a couple of months. At first she was away with the fairies but after a few days the effect was amazing. The first time I had seen my mother look pain-free and normal in years - and despite being stuck in a wheelchair for the first time ever, she looked happy. She''s now just on Oramorph, walking again and doing okay for the moment.

I''m sure I sound like a total junkie, but I have spent a lot of time in hospitals with other chronic pain sufferers many of whom won''t take meds. I prefer to take mine and have a normal life that isn''t dictated to by my health problems. In 5 years I have never needed to increase my opiate dose except for temporary setbacks, so I am officially ''not addicted'' apparently!

Don''t talk to me about appointments - last time I saw my neurosurgeon they cancelled my appointment SEVEN times and it took nearly 6 MONTHS to see him. I have discovered the only way to get fast appointments is to be pregnant - I''ve got a new appointment with a new pain guy on the 17th December - took 3 weeks from referral. AMAZING (for the UK anyway) - it took nearly 2 years to get an appointment with the last one I saw.

 

[poshpepper]

Good thoughts and prayers outgoing. Sorry you are going through this again

I am praying for the best for you!

 

[Dreamer_D]

LS I am so sorry that you have to go through this, there is simply no rhyme or reason in life sometimes. You have a great attitidue about life and your situation, though, and it will carry you far. A little humour goes such a long way. Hey, if the chocolate and the ice-packs aren''t working, you can always stare lovingly into you sapphire ring and maybe that will help... even just a little, even just for a second.

Keep us posted honey, I am wishing for your miracle.

 

[2Artists]

Huge hugs and prayers sent your way.

Mrs.2Artists

 

[onedrop]

LS: I had no idea what you are going through. My thoughts are with you and that there is some resolution soon!

 

[LostSapphire]

Date: 12/4/2008 7:52:29 AM
Author: Ellen
LS, I totally did not see this til now. I am so sorry. Will send good thoughts and prayers your way. Hang in there.

And if it were me, I'd be on the phone demanding an appt., explaining just how much pain you're in. This is no time to be shy.

Ellen:

I saw your post this morning. And all day I kept thinking, for every other thing around here that people are hesitant to do, what do we say? "Put on your big girl panties and deal".

So I did. And thank you for the push.

I had been so assertive about getting my MRI and neurosurg's appt last week and so was tired of calling and begging and well, you know.

First I called my neurosurgeon (the one I saw last week) and found that yes, my file has been sent to his team-colleague who specializes in trigeminal neuralgias. So I politely asked for the name of his secretary, and her phone number. Found out when she goes for lunch/breaks so I dont mess her up.

Then, I called in to this other doctor (they all share the same area of the hospital.) Made a new friend with his secretary. Found out that part of the delay is that he won't book an appt until he has read the history and reviewed the MRI. Of course, that would take HOURS considering the size of my file..........

There is only one more neuro-clinic with this guy between now and Christmas. I'm on a cancellation list to see this doctor, worst case scenario it will be the 1st clinic in January.

Kissed up big time. Told her I'd bring HER some of my homemade raspberry jam too, like I did for my other doctor's secretary, if anything came up 'suitable' for me. D*mn, I'll show up at 3a.m. on Saturday if he wants me there.

In the meantime I have an appt with my GP on Monday to talk about the meds to try and get some pain control.

So my friends, thank you again for your notes of support. I REALLY appreciate it. The pain is still awful but I've at least made progress with the doctors.

LS

gotta go find me some chocolate...oh yeah, here we go:
ETA: I've got the one with the THREE cups

 

[risingsun]

LS~I am so sorry that you are having this relentless pain. I am a chronic pain patient--nothing as severe as yours--and know how it can wear you down. I'm sure you have already tried this, but when I have a flare up of TMJ, I have injections in my jaws and face. It does help calm the pain and spasms. I also have infections in my back for disc pain/spasms. I will be checking this thread to see how you are doing. My thoughts and prayers are with you.

 

[LostSapphire]

Hi risingsun.

Oh how I wish, an injection would work! One of the first things they did 2 years ago was to check for TMJ. None there.

The problem is, the pain is coming from a nerve inside my brain.........and so the ''fix'' is usually somehow trying to get at it. Medication seems to be short-lived as far as how long it works.

Thank you for the good thoughts.

LS

 

[Miranda]

I just saw this LS. I''m so sorry you are having to deal with this. After reading through these few pages it is easy to see what a pillar of strength you are. You are an incredible person.

Big hugs and kisses honey!

 

[LostSapphire]

Date: 12/4/2008 3:02:03 PM
Author: Pandora II

Can I hazard a guess that you get situation #1 about an hour after you take your meds and for the first 4-7 days after titrating up. Situation #2 is when you are due a new dose and becomes the dominant situation the longer you are on any one dose?

I so feel for you - it's like trying to live with the worst toothache/migraine you can imagine, only it doesn't go away. I find I can concentrate on things for about 15-20 seconds at a time when mine is bad. I have to keep moving position and I can't lie down, sit down, stand or anything so I just hop about the place. I have often said that if I knew it would take the pain away I would willingly amputate my legs - geez, I'd do it myself if I had to!

Normally I take an extra 60mg codeine and add 10mg of amitriptyline when things are REALLY bad and although I probably can't talk any sense at that point, I don't care either!

Amitriptyline is well worth a shot as well - it often works well on nerve pain. But only try 10mg as it knocks you out in a big way to start with.

Can your neuro send you to a good pain specialist? There are a lot of options out there. I truly believe that there is no reason why someone should live with appalling pain.

My mother has MS and often gets TN as part of an attack. Her last attack was so bad they put her on a syringe driver of diamorphine for a couple of months. At first she was away with the fairies but after a few days the effect was amazing. The first time I had seen my mother look pain-free and normal in years - and despite being stuck in a wheelchair for the first time ever, she looked happy. She's now just on Oramorph, walking again and doing okay for the moment.

I'm sure I sound like a total junkie, but I have spent a lot of time in hospitals with other chronic pain sufferers many of whom won't take meds. I prefer to take mine and have a normal life that isn't dictated to by my health problems. In 5 years I have never needed to increase my opiate dose except for temporary setbacks, so I am officially 'not addicted' apparently!

Don't talk to me about appointments - last time I saw my neurosurgeon they cancelled my appointment SEVEN times and it took nearly 6 MONTHS to see him. I have discovered the only way to get fast appointments is to be pregnant - I've got a new appointment with a new pain guy on the 17th December - took 3 weeks from referral. AMAZING (for the UK anyway) - it took nearly 2 years to get an appointment with the last one I saw.

WOW Pandora I appreciate how much time you have taken to comment on my question!

I am needing some sleep as the past few nights have been rather awful, but will try and respond with some clarity if I can:

Situation #1 and #2 fluctuate: ie: the dizzy/imbalance/stupid brain lasts for a couple of days. Then, we get balanced, smart, but excruciating pain for a couple of days. I have only been on this for about 6 weeks so it's probably too early to sort this out. I'm at 800mg/day right now, and taking 200mg every 6 hours. Monday I see my GP for bloodwork and we're going to talk about some temporary pain meds until I see the next neurosurg. My original surgeon didn't want to mess with the meds until I saw the 2nd guy. Hopefully within the next month at the latest.

The neurosurg wanted me to explain how it felt: I said like all 6 of the teeth on my upper jaw needed root canals. When I go out in the cold they all start screaming. When they are really flared up (like this week) it's like burning on the upper side of my palate. Today it feels like I have an axe embedded in my face, and on fire inside. No codeine touches the pain. I don't bother anymore, it just rots my stomach.

I've been on amitriptyline before: hate it. The tegratol gives me usually, a very good sleep for some reason. As long as I'm not in shape like this week, that is. My GP wanted to give me Percocet last week but I'm not too enthused about that family of drugs.

Do you mind my asking: is the MS the cause of your mother's TN? How wonderful that they found a way to take away her pain. I'd like to visit the faeries right about now too..do you think she'd share?

I seem to have reasonably good luck re:appointments. The original neuro who did the AN surgery seems to have opened a lot of doors for me. In the space of 6 weeks I've gotten a diagnosis, an MRI and the first appt with the neuro. My guy is famous here (buildings are named after him: how on God's green earth I got him in the first place is a good question...but I use his name wherever I need to at the hospital and people kind of go "wow" and I get somewhere. Shameless I know but I'm using it.

Sorry you had to go and "get yourself preggers"

to get yourself fast tracked. I'm just over 50 so that's not in the cards for me...but if it works for you, have a ball.

Pain clinic? yeah, I know. Been there, done that. Years ago in my 20s I had a birth defect in my hip that resulted in numerous surgeries. I lived between orthopaedics and the pain clinic...maybe I need to call them up to.

Mostly, I just want someone to FIX IT! They have been operating on my jaw/teeth for 3-1/2 years now and it all turns out to have been something else. I want it over.

Thank you Pandora, for your sage advice and helping me keep a sense that I am not insane (I can't be: I saw my brain last week and it looked just fine...to me anyways).

Gotta go nighty night

Thanks again

LS

 

[pjean]

LS, I just saw this. I'm so sorry you're having to deal with this! Definitely don't worry about the nightly blues - what the heck else is the internet for? (Well, that and enabling the buying of pretty jewels, of course.)

My sister just got an appointment for laser surgery on a tumor in her pituitary gland off the cancellation list - I'm going to believe it's a trend.

Dust! Dust for a quick appointment and some more effective pain relief. If all else fails, can ice cream act as an internal ice pack?

ETA: I just read your reply to Pandora, and it sounds as though ice cream would be the LAST thing you need - I'm waiting for 3 root canals right now myself, and I avoid it like the plague. Maybe some of those Lindor chocolate balls instead.

 

[Linda W]

LS, I am thinking about you and so wish that awful pain, would just go away.

I also suffer from the same problem you have. I do not have a tumor though. I was diagnosed with MS, then was un-diagnosed with it, by my new neuro at UCSF (not enough brain lesions). I don''t know how you can deal with the pain day after day after day. You are one strong woman sweetheart.

I am saying special prayers for you and sending you a great big hug.

Love, Linda
xoxoxoxoxox

 

[Harleigh]

LS...I am so sorry to hear you are in so much pain. I am glad that you are attempting to "take the bull by the horns" and try to get things moving along. I also have had chronic pain since I was 17 (now 36) and sometimes it''s almost too much to get each day started, so I have a bit of an inkling of what you''re going through, but not to the degree.

Thank you for reminding me that I SHOULDN''T ignore it, and it''s up to me to harass the dang doctor to do something to help me already. No one else will be an advocate for me, so it can only be placed on my shoulders for now.

I really hope the dr. can fit you in and that somewhere along the way, they can help you manage the pain. It sounds like Pandora had some really good ideas that might be worth a try, but again, that requires help from your doctor. I''ll keep my fingers crossed that someone, somewhere, gets of their a$$ and helps you already!

Being in pain really sucks, and I am so sorry you''re having to deal with this.

Big hugs!

 

[Ellen]

I''m glad I could be of help LS. I know what you mean about getting tired of "dealing", but you should not have to put up with this pain if at all possible. And sometimes I think some doctors get rather oblivious to things, so we need to shake them up. Good for you, keep at it.