Need someone to talk to. Driving myself insane!

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Need someone to talk to. Driving myself insane!

Postby NuChiarian » Thu May 10, 2012 8:56 pm

Uhhhhhhhhgh.

I've been experiencing really weird symptoms latley and it's driving me nuts. I'm so scared of needing a second surgery (I have SM and Chiari cause by Spina Bifida Myelomeningocele) and I don't really have anyone in my family that I can talk to. NOT that they don't try and be supportive, but this situation is just so out there that it stresses them out too, and they can't do anything about it. I can't get my mind off of this. Nothing I do for pleasure works cause I start to think that I won't be able to do it any more if I have to have more surgery.

I've always had pain ever since I was first decompressed in May 2010, but I just recently noticed a fast heart rate (slightly over 100 bpm a lot of the time. Not sure if this is normal for me as I don't know what my regular resting heart rate is) and I read online that this can be because of brainstem dysfunction and Chiari. I know your told not to read anything online, but it's there for a reason, isn't it? I'm also experiencing weird sensations on my cheeks *tingling* and in the past few days my palms have been clammy.

I haven't had an MRI since my surgery and I'm terrified that my not being diligent enough in my post op care & watching for symptom recurrence is going to cause the Chiari to come back (not cause it to come back, but prevent me from being treated again sooner). My NS told me after my first surgery "come back if you have a problem", but he never told me what "a problem" was. Stupid of me not to ask I know, but I was just so happy that the first surgery went fine that i didn't think to do it.

I've also had a problem with remembering exactly what my symptoms felt like. I know that they existed, but if you asked me to describe them I wouldn't be able to tell you, which makes it harder when I do feel something to be able to tell if it's Chiari or not.

I contacted my NS, but because I haven't seen him in so long I have to get my family doctor to make a referral, and who knows how long it'll take to get an appointment. Meanwhile I'm still dealing with symptoms that make my situation IMPOSSIBLE to ignore or get distracted from (not the severity of the pain, that hasn't changed, but the fact that it is there and that some stuff like the facial sensations, the fast heart rate and clammy hands are new...which makes me think I'm progressing again)

I'm also losing sleep over the worrying and the waiting. I just need someone to talk to. Please DO NOT try and diagnose me as that will just make me feel worse.
Spinal Decompression and cervical fusion with duralplasty of own tissue/May 2010 for ACM and SM

dx w/ Spina Bifida Myelomeningocele and Hydrocephalus at birth.
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Re: Need someone to talk to. Driving myself insane!

Postby emmacos » Fri May 11, 2012 6:05 am

Hi,

Just wanted to say hi so you know you are not alone!

I understand how awful you are feeling, and you do feel like you are driving yourself insane at times when no one seems to want to help, or is unable to help...

I don't have the condition, but my 20 yr old daughter has cm/sm and she is currently in our local hospital with low csf pressure headaches, and we have asked for her to be transferred to a more specialist NS in another city, but this transfer is taking ages, and she is just lying in bed in our local hospital waiting... with head pain when she sits or stands up, feeling very fatigued, sick, light headed and faint... no one is doing anything - we are waiting for a bed to come up at the other hospital, and that doesn't seem to be happening either...

I too feel like I am driving myself insane worrying and waiting, so you're not on your own!

Hope you get to see your NS soon....

Emma.x
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Re: Need someone to talk to. Driving myself insane!

Postby Catrine » Fri May 11, 2012 1:59 pm

Hi there,

You sound exactly like me about 7-8 years ago. I too was born with SB/Myelo and have Chiari II as well as SM. I had my decompression surgery 15+ years ago. I wasn't really told clearly that my syrinx could refill (it never "goes away") and so when I was getting similiar symptoms to the first time around (for me it was clawed hands), I went to my new SB doctor and he was very little help.

I went through 5 years of looking for someone to listen to me and two ulnar nerve decompressions which really didn't solve the problem.

Finally found a surgeon (note it was a NS, not a Neurologist!!) who did listen. The stress of the whole thing did not help.

If you want to talk, please feel free to PM me.

My advice:
- Get back to your NS as a start. Depending on your situation you might need a SM specialist so ensure you are looking around for other specialists just in case. If you have a cooperative NS he/she might help you in the search - that's what happened with me
- Get an MRI - it will indicate if your syrinx is re-filling - they do sometimes (wish I had known that before). I was told by one NS that MRIs should be yearly done on anyone with SB and SM as part of a review.
- Better to try to diagnose early - I know more surgery is scary but just worrying about it is not going to solve the problem
- If you can't remember the symptoms, get hold of your medical records - the doctors should have written down everything you were complaining about. You have every right to look at/get copies of your medical records.

Hope that helps. We are a rare lot but there are a few of us out there so you are not alone.
Best
C
Catrine
 

Re: Need someone to talk to. Driving myself insane!

Postby drummergrl » Sat May 12, 2012 10:34 pm

Oh, I am feeling for you do badly right now. Sometimes I think the emotional pain is almost worse than the physical symptoms themselves.

When I get particularly stressed about all of this (who am I kidding, I'm always stressed about it!!!) I can't sleep either. That's why I'm awake now, even through my arsenal of medications that usually keep me drowsy enough to sleep.

I wish I had advice, but you know as well as I do that there really isn't anything to say: actions speak louder than words, especially when it comes to illness. So if I was with you, just know I'd bake you a pan of brownies, watch some distracting reality TV with you, and let you rightfully vent. This stuff really sucks!

I hope you get a little peace soon. Know you're in my prayers.
CM, SM, Scoliosis
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Re: Need someone to talk to. Driving myself insane!

Postby NuChiarian » Tue May 15, 2012 5:58 pm

O.K. so went to my doctor and I found out I have a UTI, and I still feel really crappy, but it doesn't feel like the Chairi symptoms I had before. I have a headache, but it's a dull ache and I'm not sure where it's coming from (sort of feels like the back and front of my head and my nose...is that a Chiari headache? I never got one before) I also feel sort of flu-ish, but I have no temperature.

I've had semi-familiar symptoms off an on like arm numbness and shoulder pain, but I don't know what's going on really. An MRI is pending.

Has anyone had a UTI aggravate symptoms after being decompressed?
Spinal Decompression and cervical fusion with duralplasty of own tissue/May 2010 for ACM and SM

dx w/ Spina Bifida Myelomeningocele and Hydrocephalus at birth.
NuChiarian
 
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Re: Need someone to talk to. Driving myself insane!

Postby drummergrl » Thu May 17, 2012 8:01 pm

I've never had that happen before, unless the illness is something that causes straining: like a cough/cold causing tingling and numbness because when I cough I block off the flow of CSF. But who knows, maybe a UTI can trigger something? You never know.

Im glad to hear you have an MRI pending- I know for me, it's always reassuring to get another look at all of that, just to be sure. Is it soon? The worrying is no fun!
CM, SM, Scoliosis
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Re: Need someone to talk to. Driving myself insane!

Postby Graybo » Fri May 18, 2012 4:11 am

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Re: Need someone to talk to. Driving myself insane!

Postby NuChiarian » Fri May 18, 2012 2:56 pm

I don't know when the MRI is yet. I still haven't gotten notified and my head symptoms just keep getting worse. I feel like I have a led balloon in my head. It feels SO heavy, but I think because of the titanium rods I have in my neck from decompression, I can still hold it up. I remember when I got diagnosed with Chiari one of my symptoms was that I could not hold my head up at all. My NS office is being no help. They can't do anything until the referral goes through.

The weird thing is, my symptoms are not overlapping much. If I have sore shoulders, my head doesn't hurt and visa versa. If I'm dizzy, I don't have heavy limbs. Weird.

The good thing is those symptoms I was mentioning about the clammy hands and fast heart rate haven't happened in awhile. I'm also on Ciprofloxacin for my UTI. I don't think I've ever taken it before (I get a lot of UTI's cause of SB) and it can cause some of these things, which have gotten worse since I started it.

Graybo, Aspartame?? I chew A LOT of sugar free gum...
Spinal Decompression and cervical fusion with duralplasty of own tissue/May 2010 for ACM and SM

dx w/ Spina Bifida Myelomeningocele and Hydrocephalus at birth.
NuChiarian
 
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Re: Need someone to talk to. Driving myself insane!

Postby Graybo » Sat May 19, 2012 5:22 am

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Re: Need someone to talk to. Driving myself insane!

Postby NuChiarian » Thu May 24, 2012 12:00 pm

I've been feeling better lately, but I've had a new symptom the past couple days.

When I go up stairs I get a pulsing in my head, like a heartbeat. It only lasts while I'm going up the stairs and doesn't happen any other time. Has anyone with ACM and SM experienced this? I never have before.

My MRI hasn't been scheduled yet.
Spinal Decompression and cervical fusion with duralplasty of own tissue/May 2010 for ACM and SM

dx w/ Spina Bifida Myelomeningocele and Hydrocephalus at birth.
NuChiarian
 
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Re: Need someone to talk to. Driving myself insane!

Postby drummergrl » Wed May 30, 2012 6:49 pm

I've heard that pulsing can be from the strain going up stairs can put on the spinal cord. I have absolutely no idea if that's true or not, but thought I'd throw that out there! I didn't get it from stairs as much, but with steep hills, which I guess would be the same/similar motion. Who knows. Crossing my fingers your MRI is scheduled (or hopefully already over!) because I know my own impatience doesn't particularly enjoy the waiting-game.
CM, SM, Scoliosis
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Re: Need someone to talk to. Driving myself insane!

Postby NuChiarian » Wed May 30, 2012 10:18 pm

Yeah, the wait time for MRI's at the hospital I go to is 90 days...so I should get one by Mid-July... Not even bothering seeing my Neurosurgeon cause all they'll do is send me for an MRI. I'll see them for the results of the test.

That pulsing in my head hasn't happened in a few days (thank goodness) and I haven't been in much pain for a couple days either, but I feel like the tinnitus is coming back in a different ear than I had it originally. I'm hoping it's just ear wax, but I'm never that lucky. It sounds like a hissing in my right ear when everything's quite. Make it hard to fall asleep, gotta keep a window open.

I'm going to my GP tomorrow so I'll see what they say about it. I know CM symptoms normally effect one side of the body, and it already got my left side before I was decompressed, so maybe it's just coming back to get my right side *cause of the tinnitus being in the other ear*.

I think I've always had some sort of noise in that ear that never completely went away since the surgery. I'm not a complainer and just attributed it to healing, but I'm beating my self up for ignoring symptoms that could be warning signs of something.

I don't know if because I've been having other symptoms latley that I'm just honing in on the ear sounds that are just what I usually have, but I've been going all sorts of crazy waiting for this MRI. Thanks for listening guys.

Hopefully I'll get an answer soon.
Spinal Decompression and cervical fusion with duralplasty of own tissue/May 2010 for ACM and SM

dx w/ Spina Bifida Myelomeningocele and Hydrocephalus at birth.
NuChiarian
 
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Re: Need someone to talk to. Driving myself insane!

Postby drummergrl » Thu May 31, 2012 9:07 pm

Wow, 90 days: that's awful! I don't blame you a bit for being frustrated. I know exactly what you mean about focusing so much on one new symptom that others might be getting ignored- I've done that exact same thing. That was how I got diagnosed with Chiari and SM, actually!

It's good you're getting in to see a doctor. Sometimes getting things checked out puts my mind at ease, especially since you won't be seeing the neurosurgeon until after the MRI.

You're in my thoughts!
CM, SM, Scoliosis
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Re: Need someone to talk to. Driving myself insane!

Postby NuChiarian » Mon Jun 18, 2012 10:56 pm

Good (in this situation) news. I've got an MRI scheduled for this week. Hopefully I'll get an answer about my symptoms soon. This is the strangest feeling in the world though, as much as I want answers, I don't want them too. I'm so afraid of what the MRI might say and what'll have to be done.
Spinal Decompression and cervical fusion with duralplasty of own tissue/May 2010 for ACM and SM

dx w/ Spina Bifida Myelomeningocele and Hydrocephalus at birth.
NuChiarian
 
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Joined: Tue May 11, 2010 12:05 pm

Re: Need someone to talk to. Driving myself insane!

Postby reedy » Tue Jun 19, 2012 12:33 pm

Having answers will allow you to plan, and take away that crazy, 'what-if' of a vast unknown. Its still a big unknown, but you will be able to define it better and take some control of the situation.

We are all sending you our best - know that you've got pals on this site.

Good luck
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