Constant pain and HOPELESS

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Constant pain and HOPELESS

Postby StephMoore » Fri Aug 10, 2012 6:43 pm

I am two and a half years post op. Was diagnosed with a severe Chiari malfmormation with several syrinx. After my surgery in Jan 2010, the pain seemed to go away for a few months, then returned full force! The horrible headaches are gone; however, I'm in more pain now than ever before!! My Neurosurgeon tried many different meds and has handed me several diferent ideas as to where the pain may be coming from. One idea is that my neck is too straight. Another idea was that I have a couple bulging discs, but then she says they were nowhere near severe so they should not be pushing on anything and wouldn't even consider doing surgery. I'm a small framed person and do not tolerate meds well. I take Lortab 5, only half at a time and RARELY take more than 1.5 a day, but wear a TENS unit every day from sun up to sun down. I've tried meds, physical therapy, accupuncture and 3 epidurals...no pain relief.

The pain is different depending on the day and what I do. Some days the base of my skull hurts when I breathe in, others my neck hurts, my middle back, into my shoulders, my lower back and into my legs.... I work a desk job and can barely tolerate anything other than laying down at home. I was once active, but definitely not anymore! I can't even go shopping at the mall without being in pain.

I finally asked my Dr to refer me to Duke...which is where I went today. I saw a Neursurgeon, Dr. Sampson.....HORRIBLE! He was one of the most inconsiderate and stuck up Dr's I've ever met!!! He was in my room no more than 5 minutes and said he can't be sure, but thinks the pain may be Fibromyalgia. And left the room. I was and still am VERY upset! I want this pain to GO AWAY! I researched Fibromyalgia when I got home because he didn't know enough about it to tell me (his words)....and there is no way this is what I'm suffering from.

I CANNOT continue on the road that I'm on. I feel I'm at the end of my rope. I need help!! I feel like the people around me are just tired of me complaining about hurting and no Dr can help me. I have a 10 year old son who deserves his Mom at her best and I feel desperate!

Help?!
StephMoore
 
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Re: Constant pain and HOPELESS

Postby vframe » Fri Aug 10, 2012 8:43 pm

don't give up, i can't speak for everyone only myself, i have been there. i don't have a young son to look after but i am only 45, have just gotten my 9th grandbaby, and have had to give up a career that i love. i used to be able to spoil my husband and now i have a hard time doing anything. i do not have CM only SM, was dx'd 1 1/2 yrs ago with syrinx only and now have syrinx and some disc bulging and don't know how that happened. but don't give up. the first NS i went to basically told me it was no big deal, i was making up the pain, take an aspirin and call me in the morning sort of thing, know what i mean. i did go to another Dr. Guy O Danielsen at Texas Spine and Joint Hospital in Tyler. He has admitted he doesn't know what all my pain is coming from but he will keep researching and consulting with other NS that he knows all across Texas and even NY and LA until he/we find an answer or whatever we can. There are a lot of good NS who know what they know but have never had experience with CM/SM. You just have to keep researching and try to find a NS who will listen to you and help you find someone to help you if he can't. not all doctors are assess like the one you saw at duke.
as for the pain, there are several here in this group who can give you a lot more info on alterate pain relief, i have not tried any of them yet, i have only been on the site a short time, i want to wait til after my appt with my NS next week to discuss surgery options r/t my disc.
don't give up hope, there are a lot of options out there that we have yet to explore and find a good NS is the first thing that needs to be done.
will be praying for you some pain relief and a good NS
vanessa
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Re: Constant pain and HOPELESS

Postby tennesseewalker » Sat Aug 11, 2012 4:22 pm

My CM/SM can cause very strange symptoms. Like when I use a hair pin to scrape the blackheads from my nose, I get sharp pain at the base of my skull on the right side. And when I scratch the lower right side of my face, I get a sharp pain at the base of my neck where it meets the right side of my shoulder. It's like the wires are crossed.

Steph, I think you need to keep a journal and document your pain daily. Write what you were doing when the pain got worse, what you did to try to alleviate it, etc. Your doc may take it more seriously that way. It's sad, but most docs don't research their patients' symptoms. They just throw any old diagnosis at you or refer you to another doc.

It really sucks when you have to be your own doctor.

Gentle hugs.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Constant pain and HOPELESS

Postby StephMoore » Sat Aug 11, 2012 5:58 pm

I GREATLY appreciate both of your replies!! I'm relieved to hear you both have somewhat similar problems, but so sorry for the both of you, too!! Of course, I'm not happy at all that each of you have these problems, but very thankful there are other people who do understand! You all will be in my prayers, as well.

It's so hard to get up and go to work every day and my poor co-workers catch hell because I hurt and get moody. I'm a very upbeat, funny person but the pain really drags me down. My husband doesn't understand and really doesn't know what to do...and catches hell from me, too. I cannot quit my job, but it's so hard to sit in a chair at a computer each day. I can't imagine that anything else would be any better, but have called in to work a few times and have to leave early for appointments.

I'm definitely weighed down with stress and have thought about trying to get on some type of anti-depressant or some type of medication to help me deal with this. But, I wonder why should I get on anti-depressants to deal with pain?! It's all so unfair. My worst fear is dealing with this pain for the rest of my life and becoming addicted to pain meds. SO many people are addicts because of pain meds and I REFUSE to be one of them! My son deserves so much more!

I would LOVE to be trying to get pregnant right now, but know my pain is too much to carry extra weight and try and tend to a newborn. :( I feel like I'll be a dissappointment to my husband because he has no children of his own.

I will try to keep a journal of my pain; thank you for the suggestion! I forget everything, so we'll see how that goes. I do experience the 'wires crossed' too! I've told people, and they look at me like I'm nuts.

I live in a small town and nobody here has ever heard of CM or SM and the Dr's don't know anything about it....except how to hand out pain pills. I feel as though ppl think I just come up with these strange symptoms out of boredom.
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Re: Constant pain and HOPELESS

Postby gunflint » Sat Aug 11, 2012 8:27 pm

I think that occasionally we have to keep things in perspective. Am I addicted to pain meds? Let's define addicted. With pain meds I can have a somewhat normal life most of the time. In other words more good days than bad. I believe that those of us that suffer and will continue to suffer the rest of our lives with chronic pain must make some hard choices. I'm not addicted to pain meds as much as I'm addicted to pain relief. I owe it to myself and my family to enjoy as much of this life as I can. I refuse to martyr myself based on other peoples perceptions of what meds I should and shouldn't take. I take prescription pain meds so I can go fishing with my grandson or shopping with my wife, etc. There is a lot of negative attitudes about pain meds but that's not my fault. If druggies want to abuse them so what, that's on them not on me. They only make it harder for me to get them and stigmatize those of us that need them. Is a diabetic addicted to insulin? I could go on however my point is that if those of us with CM /SM take medication so that we can live as close to a normal life as possible, that's our choice and it really is no one Else's business. Try not to be so hard on yourself. The same goes for anti depressants.
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Re: Constant pain and HOPELESS

Postby StephMoore » Sun Aug 12, 2012 9:17 am

gunflint - So very true and thank you! I suppose either the pain is going to ruin me while I try to stay away from the meds...or the meds will allow me to somewhat function and provide some relief. I guess my problem is that I've never understood how people allow themselves to become addicts and I fear that they felt that at some point, before them came addicts.
I've told my husband if he ever thought I was becoming addicted to the meds, to take action. He had the same view as you.... If I'm taking the meds for the right reason, no need to worry. I cannot stand the way the meds make me feel, but the pain relief it provides is worth the feeling of being medicated.

I know each person is different, but what meds have you all found to be helpful? I was just on Neurontin 300mg 3x's a day, but couldn't tolerate it and didn't see as much pain relief as when I take the Lortab 5's.

Again, THANK YOU!!
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Re: Constant pain and HOPELESS

Postby gunflint » Sun Aug 12, 2012 12:36 pm

I'm glad to hear that. Personally I take a 3 or 4 day break every few weeks. I do this for two reasons. The first is to try and not build to big of a tolerance and the second is to try to keep a good perspective on my pain. Has it increased without the meds? Do I have new pain symptoms? I understand anyone who is hesitant to go down the narrow path of taking pain meds. I have been staying with hydrocone (Lortabs/Vicadin) My GP and I have discussed taking the next step to Percocet/Oxycontin but I don't want to go there just yet as that's a hard road to turn around on.

You have been dealt a hard hand to play as most of us here have and it's just my opinion that sooner or later the pain will win. Until that time I'm going to try to do as much as I possibly can to be productive and active. If that means taking a few pills everyday so be it.
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Re: Constant pain and HOPELESS

Postby razzle » Sun Aug 12, 2012 1:22 pm

Step have you been back to the dr. You could have something else going on. dont assume everything is sm.chiari related .. how long has it been since you had a blood panel ? Have your vit d levels been checked .... I guess everyone else is not like me . I go to the dr the slightest weird pain I have .. you have to be on top of this .... The epidurals you had were a big no no ... PT somedo it some dont , it made me worse ... Tens unit did nothing for me.. You have to get a chiari SM specialist before you get any answers and yes all drs that know nothing about sm/cm say you have fibromyalia ...They are just passing the buck...
your meds may be all wrong ... like I say there may be something else going on....Take care . go to family dr get a 30 min appt and lay it all out .....be wishes
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Constant pain and HOPELESS

Postby gncrzy3 » Thu Aug 16, 2012 9:01 pm

Keep your head up.. It is extremely frustrating but there is hope!
I am being sent for an eval for an intrathecal baclofen
Pump and they are telling me they can possibly get me
Off most of my meds ( I take more than 20.. Including morphine and valume ( for
Muscle spasms) the most frustrating part for me has been finding GOOD
Doctors that were also knowledgeable. This board is an awesome
Place to get help with that as well. Good luck to you
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Re: Constant pain and HOPELESS

Postby StephMoore » Tue Aug 21, 2012 7:12 pm

Again, thanks to EACH of you! My source of hope is right here on this message board! No kidding, 'talking' to you guys got me out of a 'rut'. I printed off the patient handbook and got to studying. I called my NS (that did the surgery) and asked if she could call in Lyrica...which she did. I've been taking 75 mg of Lyrica 2xday for almost a week and already feeling a difference!!!!!! I'm still taking it easy and using my TENS unit some. The pain is still here, but MUCH more tolerable. I'm hopeful that the mg's can be increased, and maybe the pain will decrease even more. I haven't taken any Lortab in almost a week and the Lyrica doesn't make me feel drugged, moody, sleepy or cause any stomach problems.
I am still worrying about the possibility of having another baby in about a year, but suppose I should take one day at a time and cross that bridge once I come to it.
I am curious if any of you have a Spinal Cord Stimulator?? My NS had mentioned this, and it would be nice to not have to deal with a TENS unit clipped to my jeans, wires running every which way and sticky pads that don't want to be sticky! LOL

Your posts/replies mean more than any of you can imagine! You guys were the major reason I got off my toosh, got my nose in papers and online and did something besides feeling sorry for myself! I'm telling ya, I REALLY like that patient handbook! I plan on printing off another copy, highlighting some things and giving it to my NS at my next appointment (which is Sept 28th).

GOD BLESS you guys! I will do my best to 'pay if forward' and stay active on this board. Hope to have nothing but positive things to say going forward, too!

Much love!!
StephMoore
 
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Re: Constant pain and HOPELESS

Postby gunflint » Wed Aug 22, 2012 12:44 pm

Great to hear. You will find that another thing that will help you tremendously is when you are able to help someone else that is new to our little club. It will happen. Good luck.
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Re: Constant pain and HOPELESS

Postby hotsauceman » Fri Aug 24, 2012 6:16 am

I too went to Duke. Advice to anyone, Don't go to Duke. I was in a unnecessary MRI for 3 hrs. The surgeon I went to also spent less than 5 minutes. In the end his receptionist called me and said "My syrinx was stable come back in six months for another MRI". I had already had two other local neurosurgeons tell me that.

I am losing the use of my left arm, atrophy and fingers are curling up. Starting to get spasms in right hand, that's how left started. constant burning and tingling in face, both arms and legs. Three surgeries two stints and 4 disc fusion and symptoms still getting worse.

Have to take baclofen daily for spasms in legs and take ibuprofen to take edge off pain. I pretty much tolerate the constant level 5 to 6 pain take Lyrica when real bad. Like others say it can change positions daily. still work 40 or more ours a week while I can, not sure how much longer. I too am looking for someone who will look at something other than my stabilized syrinx. I feel there is something else going on.
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Re: Constant pain and HOPELESS

Postby StephMoore » Sun Aug 26, 2012 10:46 am

Not sure where you live, but I see a NS in Lynchburg, VA...Katrina Murphy. She's been great, but guess I was just hoping if I went to another NS they would "cure" me. After going to Duke, I realized how great my current NS really is. It's definitely sad to hear there's no miracle cure for us, that we just have to learn how to cope and find the right mix of meds.
Lyrica (so far) is the best I've found for me. I'm small and don't tolerate meds well, but don't feel as bad on Lyrica as all the others I've tried. I still haven't done any activities (including cleaning the house) to see how I'll feel. Although, I haven't had my TENS unit on at all for a couple days now and actually stood on my feet for about 3 hours Friday. Do you think taking the Lyrica daily would help you more than just 'as needed'?
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