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Extreme Pain, Neck Pain, Headaches..etc..
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Extreme Pain, Neck Pain, Headaches..etc..

I am so sick of feeling this way and just want a good week! Well I want to feel better period! I have been through 2 decompression surgeries for Chiari, after the last one I have felt even worse and I have symptoms worse than I had before and newer symptoms. I recently turned 40 years old.  My recent MRI's were NORMAL (as stated from the doctors). The Brain MRI, just states previous decompression surgery for Chiari Malformation and also mentions a lipoma in the supersellar region (it didnt' give the size and it differs on all my MRI's & CT's as to size and whether a lipoma, dermoid, or rathe clefts.

As to my Cervical MRI, they state:

Findings: There is a vertrebal body hemangioma of T4. The curavature of the cervical spine is within normal limits (weird because other MRI's stated lordosis). Theere is disc space narrowing and osteophytess at C2-3, C3-4, C4-5 and C5-6 and C6-7. The bony spinal canal is congenitally small. No abnormal signal is identified within the spinal cord.

C2-3 There is disc protustion or osteophytes causing mild narrowing of the left neural foramen. The thecal sac and right neural foramina are intact.
C3-4 There is disc protrusion and osteophytes measring 2mm. The thecal sac measures 9mm. There is mild narrowing of the neural foramina bilaterally.
C4-5 There is disc protrustion and osteophyte measuring 2-3mm. The thecal sac measures 9mm. There is mild narrowing of the neural forimina bilaterally.
C5-6 There is disc protrusion or osteophyte measuring 2-3mm. The thecal sac is flattened anteriorly. The thecal sac measures 8mm. Disc and/or osteophyteds result in narrowing of the neural foramina bilaterally.
C6-7 There is disc protrustion or osteophtye toward the left measuring 3-4 mm. The thecal sac is flattened anteriorally. The thecal sac measures 8mm. Disc osteophyte narrows left neural foramen greater than right.
C7-T1 The thecal sac and neural foramina are intact.

There is no abnormal enhancement in the cervical region. There is a suboccipital craniectomy.
Impression: Disc Protrusion and osteophytes throughout the cervical region resulting in mild stenosis of the thecal sac and narrowing of the neural foramina as discussed above.

Now could any of this be causing my symptoms? I know it is not in my head and it is NOT depression causing my issues! Something has got to be causing this. I want whatever it is gone and fixed.

Here are just a small amount of the symptoms I have of many:
I get severe pain in my neck and into my face to eyeball and above (all at once - starts in neck) - mostly my right side, but once in awhile I do get in the left - mostly the right though, big time!
I get severe pain/migraine that feel like an icecream headache times 100!
Pain in upper back area worse in one area.
Pain extending into arm.
All kinds of migraines!!! Different kind/areas
Bad memory/concentration
some tinglng and pins needles
nausea
lightheadedness
face freezes up like paralyzing almost - feel like can't breathe, feel like going to pass out (and i have before so I know what that feeling is like), weak, get dizzy but is not spinning dizzy, it is up and down up and down. It is very strange!
I have much weakness in my arm/hand (left side) and my left leg! Big time! I am having trouble typing and more trouble writing. Can't hardly hold pen to paper.
Off balance

Those are just some! (that is just my upper half).

So why are those results considered normal? They don't cause symptoms? I am in pain here and I need someone to help me but so far, a lot of the people I have gone to see, look at my MRI's for literally 30 seconds and say, "you have a headache, that is normal", etc...  or they say, "everyone has those things in your MRI'.  I want to feel better. I miss going to concerts, football games, and fishing! I can't stay at family function but for an hour or less. Sitting up etc..makes my neck pain much worse and then I get that into the face, eyeball, etc...!

Any help would be appreciated.

Thanks ahead of time!

28 Comments Post a Comment
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Avatar_f_tn
p.s. It was not the doctor who told me it was normal it was a nurse. Anyway, I am trying to see a doctor I have been to awhile back.  It is a good wait to see him. These MRI's they just told me on the phone no stroke and no tumor.

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620923_tn?1416285879

  Hi.....The flattening of the thecal sac is where u may have issues....the lipoma may not be an issue and since u do not know a size it is hard to consider that an issue.,

I have a few bulging disks and cervical stinosis, (narrowing) and wonder if u have EDS as that is y my disks are the way they are, the connective tissue is lax and does not hold it all together like it should and can cause pain.

Also I was told a disk that is bulging can obstruct CSF flow just like the cerebral tonsils....

Sounds like u may have some issues that someone missed b4....wish I could offer more insight.
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Avatar_f_tn
Thanks I appreciate the help and insight. The last known size of the lipoma, dermoid or rathe cleft was anywhere between 4 and 5 mm.  I know that is small, but they kept fluxuating in the size of it when reported on the MRI. This last one didn't say. She for some reason (the one who does these reports) hardly ever states the size.  CCF, I think it was 4 to 5, I can't remember at the moment.

I wonder why some doctors say it is normal to have all of that? Also why they say everyone has it.  I am thinking on nurse I spoke when I called the ortho neuro (who did my lower back surgery where my disc broke) I was trying to leave him a message, but she told me instead that it didn't matter because everyone has that (even the flattening of the sac). I had no idea everyone has that. I wonder why they only look at a few of the MRI images and not all of them. Why do they take so many if they only look at a few (as stated by my local hospital).
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Avatar_f_tn
p.s. the last known size of the hemigoma (T4 area) was somewhere around 4 to 6 centimeters.  I don't know what it is now, since she didn't report that size either. Most all other radiologists have reported the size.  Our local radiologists have missed things a lot on my MRI's. I have had better ones from CC and in which has helped me in ways with knowing what was wrong, with what could have become even worse.  I was told that taking out the cerebral tonsils was no big deal (as we have discussed before) and that they have no function (by 2 surgeons) and yet other doctors have been shocked that they were cut off.  I sure would like to get a poll and see if anyone has become worse after surgery and if they were if they had theirs cut off too.  It would be interesting to know.
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620923_tn?1416285879

  My understanding is they are finding more uses of the cerebral tonsils, and they use to remove them to make room....now they only do so if there are other components entwined around them....mine were cauterized....and not so they completely retracted but just so they moved a tad bit out of the way.....


Each Dr is going to have a Diff opinion as Chiari and the research of how it affects us is in it's infancy....

The change in size for ur lipoma can be diff slices of the MRI...angles can affect how long or large something appears so if they are diff angles (slices) then u can have a discrepancy on size. This happens with the cerebral tonsils too.

The lipoma is a collection of fatty tissues....many people get these...many have EDS....I keep coming back to that with u....so I really wonder if u have it.....it would explain a lot of ur symptoms
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Avatar_f_tn
They haven't been concerned about it because I don't have much of the symptoms. I have no flexability or anything of that nature. I maybe have a few of the symptoms. All of the surgeons and regular neuros I have seen have not thought I had it. So I am not sure.  I often wonder though if I should go somewhere, where I can have a stand up MRI done (not that I like standing for a long period, because I would probably fall). But I thought I head once that a stand up one will most likely show TC more than a laying down one (although as we discussed before it doesn't always show on an MRI).  My neck and head pain have been horrible today. I am just sick to my stomach with pain (literally).  It is just awful.  It is that way a lot. I can't stand being like this.  
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620923_tn?1416285879

  no an upright si not going to help show TCS....it helps with those that may be told their cerebral tonsils are not considered Chiari as the herniation may be 4mm or less....gravity can have an effect on that.....

Plus I think for a brain MRI that is upright that u can sit....I never had one...so I am not sure...there were none available around here.

As I have said EDS is not ALL hyperflexibility.....so it should be looked at by a Dr that is well experienced with EDS just like going to a Chiari specialist....u need to make sure.
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Avatar_f_tn
Okay I will check it out as soon as I can.  Woke up with a horrid migraine as usual. The stupid icecream type migraine keeps coming and going and well...I am trying to not take my pain meds and it is just making me miserable...the migraines that is. I try not to cry as it makes the pain worse.  I have cried though. I am so used to this that it is crazy.
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Avatar_f_tn
I was flipping through the internet and came upon a question/answer type forum and the person had Thecal Sac Flattening. Everyone on there (not doctors or nurses or anyone who has had it), said it is quite normal and everyone has it. If I remember right, they were saying that it won't cause symptoms, because everyone is walking around with that stuff (flattened thecal sac, etc). If the forum was not so old I would have jumped in there and said, "So everyone has a flattened thecal sac"?!
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620923_tn?1416285879

  That is odd and I know we discussed this b4 in the Chiari forum....but I feel it is something they do not know enuff about, as I do not have the flattening of my thecal sac....it wasn't on ne of my reports......

I hope ur Drs can figure out what is going on and help u feel better soon.

((hugs))
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Avatar_f_tn
I am so upset beyond belief. I am so upset that I am in tears! I just came back from my family doctor. The Resident told me that my head MRI for my head was fine but my Cervical was not normal. She told me I had a lot of stuff going on in here (and she pointed to her neck and moved her hands along her neck). She said you have a lot of that narrowing and....I will just let Dr. S explain it to you. Well he came in and said it was all NORMAL. He is sending me to a psychiatrist because the Chiari and The Neck stuff is ALL IN MY HEAD!!!!  I am beyond words at this point and I came straight home crying all the way. I do NOT need a psyciatrist bec it is not all in my head. This kind of pain has to be coming from something.  I can't hardly type right now my hand is still week and it doesn't help that I am crying.
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620923_tn?1416285879

  I am so sorry....it seems the resident learned something recently in med school the Dr has no idea about.....

Try not to let this get to u, we all have had Drs say this to us, as Chiari is not well understood......and it is ALL in our head just not the way he implied.

((hugs))....I wish I could do something to help u....hang in there and try and see a Chiari specialist to see if they can figure it out for u.
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4851940_tn?1385441629
I can't understand why your doctor has told you everything is normal.

I have read the results of your cervical area and it clearly says that you have disc protrusion and osteophytes.  

Disc protrusion and osteophytes (bone spurs) can press on nerves causing pain.

The narrowing will also cause problems with low levels of oxygen via the blood stream reaching the brain causing sensations of dizziness.

Just take care how you move your neck and head and get up very slowly from a sitting position.  The sensations of dizziness and feeling unstable is called postural hypertension.  I suffer with this and have to be vary careful how I move.

It is no wonder that you have all those problems that you wrote.

Perhaps you could see a different doctor in the practice and ask for referral to a bone specialist and physiotherapy for help with special exercises to stop the neck are seizing up and possible traction on the neck. Having a physical problem can cause depression.  

You need to speak with someone who can explain to you the bone problems that you have and help you with pain management.  

Do you think the doctor said that it is normal because people over a certain age do tend to get bone problems?  Your report certainly is not normal.

Best wishes.

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Avatar_f_tn
He might, but he also added in when I questioned if there was anything that could be causing this kind of neck pain at all and the migraines, and weak arm/hand. He said there is nothing in this report showing me that it would cause any symptom you have! You need to see the Psychiatrist (more or less because he is saying I am crazy). 1.) it is not all in my head and 2.) I am NOT a hypocondriac! This is literally painful. I don't get him at all! My husband said that I should have said, "Wast the broken up disc all in my head?"  Did I have surgery for nothing"?! (when I had my lumbar disc broken - a big piece was in another spot and I was herniated.

I am just so upset.  My husband has been trying to encourage me to not give up and that it is now a fight. We are going to fight for my medical issues and fight to get an answer.
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p.s. He never said anything about age. The weird thing is that when it came to my lumbar disc and the broken part of it, etc... he said I was not old enough to have that happen, that it usually happens in people older than me. I just don' t get it! Was it the part where I cried saying I need an answer and said I am sick of waking up with this pain and just the everyday migraines or what?! I am so sick to my stomach. I am not depressed, but I am very anxious now and very mad.  Plus hurt t at the fact he said it was all in my head!!!
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4851940_tn?1385441629
It is not all in your head, because the MRI and other images have shown up that you do have a problem with the bones in the neck area.

Bad mistake falling apart in front of the doctor.  Happened to me when I broke down in tears with the severe pins and needles I had - got put on antidepressants and was told that if the symptoms do not go in 6 months time to get back to him.  I was no better after 6 months so he then sent me for xrays.

Best wishes.

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Avatar_f_tn
Thanks and yeh, I probably did make a mistake there. It was sorta hard to keep the tears back when the Resident was questioning me and asking me how long it has been and I said too long and that I just want the problem fixed (whatever I said to that extent) about feeling better as there are things I want to do again. Then the waterworks started. I never cry in front of them except when I am in severe severe pain. I was just in severe pain at that time.

The Resident kind of looked like, "what??" when he said it was normal and to see a psychiatrist. Gosh, I hope the heck that is not the kind of doctor she becomes.  I hope she goes with the way she was before he came in the room!
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4851940_tn?1385441629
I would see a different doctor and take your husband with you for support.

Your pins and needles and arm problems are as from pressure on nerves from the bone problems in your neck.

It is NOT in your head.  You have xrays and MRI scans to prove that.

Just because you are not old, does not mean that you do not have a problem.

If the psychiatrist appointment is free of charge, then go to it.  If you have to pay for it, then personally I wouldn't go.  But that is your decision to make.

I am sorry to hear that you have not been seen by a doctor that is knowledgeable and sympathetic to your condition.

Hope you get on OK.

Best wishes.
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Avatar_f_tn
Thanks for the suggestion and I am pretty sure I have to pay for the appointment. Their office is setting it up. Well I probably won't go.  If I did go I would probably go and see that psychiatrist and tell them that I don't have anything to say that it is a waste of time and then I will just not say a word in the appt.  My neck/head pain woke me up out of sleep this morning (as it does a lot of mornings). I hate that waking up thing to a migraine/neck pain. I am sure it is the way my head goes when I am asleep. There are mornings that I wake up and when my head is facing right and I am on my stomach....that is what causes the most horrible one that wakes me up.  I mean I get it all the time every single day but it just depends on what I am doing that makes it worse (ie sitting too long, etc...).  I have that other migraine that is baffling to me. Want to hear something strange? I was on a chiari place (some doctors page) and it gave different types of migraines/headaches. One of them matched me.  The reason I ended up there was that I decided to take my health into my own hands and I usually don't do this, but I googled my symptoms!!! That was one the pages that came up. It was

Cervicogenic Headache
Empty Sella Syndrome

I don't see the reason for the name of the icecream type migraine, bc it is NOT like stabbing pain or icepicks or any of that sort. Most of us know that an icecream headache is not like that, exactly. Hard to describle, but it is not stabbing pain exactly.  I agree with you a lot! I do need to see another doctor. I don't need dismissed or passed off like that.  I almost wonder if he did that 1.) because my husband was not there and 2.) because he didn't know and didn't want to look dumb infront of the medical resident. Either way it was wrong!!! It is wrong to pass me to a psychiatrist when I have done nothing but be honest with him and that he can see me in obvious pain at times when I am there.
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4851940_tn?1385441629
I have experienced that when I have been reduced to tears in front on the doctor, they palm you off with antidepressants or refer you to a psychiatrist.

When I was suffering really badly with my neck (I have degeneration in the bones - osteoarthritis), the doctor told me to only sleep with one low pillow and to wear a scarf.  He also told me to apply a hot water bottle to the area to apply heat.  

Try that to see if it helps you.

I had a severe neck problem a couple of days ago, may be got caught in a draught.  I wore my scarf to keep it warm and it was settled by the next day.

You already may be taking pain relief medication, but be cautious when taking Ibuprofen as this can cause damage to the stomach so only take it with food or have a stomach medication like Omeprazole to protect your stomach.  I cannot take Ibuprofen because I get swollen legs from it and Tramadol does not suit everyone either.

The heat remedy and the low pillow will not cure your problem, but may help to alleviate the severe symptoms you are experiencing.

With regard to your migraines, keep a food diary of everything that you consume to see if there is a pattern that emerges.  Some migraines are triggered off by certain foods.  Citrus fruit, chocolate, red wine, cheese are the main food triggers for migraine, but some people may have different triggers.  You only need to eat one of the trigger foods to set you off.  Stress and anxiety can also cause migraine problems.  So try and relax (easier said than done, I know).

The other point is that any stress, anxiety and depression can exacerbate any physical pain.

best wishes
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Avatar_f_tn
My neck pain (as its been getting worse - with worse symptoms which is why the MRI), woke me up very very early! I took a treximet which has yet to work! It doesn't help the neck pain but will help take the edge off the migraine up the face to eye to above somewhat.  This is not in my head at all! I am getting angry this morning wanting to call my family dr up and tell him just that! If they can just admit there is a problem in my neck area but if they admit and say there is but they can't do anything then..... I realize I will always have issues because of the chiari BUT my issues should NOT be this Bad!  People probably can't tell by looking at me but sometimes when I have bad pain I put on a game face, only because I know they are sick of hearing about it. Mean while I am suffering in horrible pain.  I pray so much that there is a doctor willing to hear me and to try to help. One that looks at my tests and one who believes me!  Of course come to think about it my family dr said my EKG was quite normal & b4 my broken disc surgery they informed me it was NOT normal by any means that it was abnormal. Every heart test I've had has been abnormal which the cardiologist believed it was neurological issues causing my POTS and stuff.
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4851940_tn?1385441629
What is "chiari"?

Go back and see your doctor or a different on in the practice.
There are medications available for migraine headaches.
But also keep a note of what you are eating drinking to rule out any triggers.  I suspect though that your migraines are through stress and worry or from blood not flowing correctly to the brain because of the narrowing that you have.

Best wishes.
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620923_tn?1416285879

  I would tend to agree that the Chiari and all the neuro issues most likely did trigger the POTS issues...as I know so many develop POTS after decompression surgery, some develop it pre op.....too much of  a coincidence..
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4851940_tn?1385441629
I have read about Chiari malformations and would agree with selmaS that this is what causing your problems.

Can you get an appointment with the neurosurgeon rather than your doctor to discuss your issues and what help further is available to you?

Best wishes.
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Avatar_f_tn
I am waiting on a neurosurgeon to call me. I am not returning more than likely to my last neurosurgeon due to the costs of travel and much more (long story).  I am hoping this other neuro can help me.  I am stressed out of my mind, yes.  Mostly because of my local doc's not understanding. As they did before my last surgery stating nothing was wrong, yet 3 neuros caught (and actually reviewed my films - took their time) and saw that it was done half way around and one side decompressed and the other side was not (however that goes). Yet, they were thinking it was in my head then w/o saying those exact words but close to it. Then boom, there it is.  Angers me that they have to treat me that way.  Plus the Medical Student (Resident) stating that I have a lot going on in there and telling me what it was and then the doctor comes in and says he doesn't see anything. That it was normal. That stresses me out even more.
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4851940_tn?1385441629
Not a very nice experience to be told one thing and then another.  
I don't blame you at all for the anger you feel when you have been told it is "all in your head", when clearly it is there on MRI scan that shows you do have a problem.

I do hope that your new neurosurgeon will be able to help you.

Best wishes.
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Avatar_f_tn
Thanks! I should have NEVER told my husband what he said because now when we have an argument (he has a HUGE temper) and I don't say something exactly how he wants me to, then he says I do need psychological help. I have trouble finding my words etc. Plus his thing is that He is ALWAYS right and I am ALWAYS wrong.  Even if I am right and can prove it he talks over me to make me wrong. So he goes into the Dr. S is right you need psyochological help.  For now on I am not telling him anything if I can help it!
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4851940_tn?1385441629
Oh dear.  I am sorry that you are not getting the support you need from your own husband.

If he is like that, then as you say, it is better not to say anything to him so that he does not upset you any more.

Just write down your symptoms and see the neurosurgeon on your own, if you feel he will make matters worse for you.

Best wishes.
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