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Should a person hurt in exact spot where an AVM is?
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Should a person hurt in exact spot where an AVM is?

Dear Doc,
I am worried that my current pain i have been having is heading to an anuerysm. I have been diagnosed with an anomally by a NL and he said that i was probably born with it, but why does it hurt? They found the AVM while i was searching for what has been causing all of my neurological problems back in '08. I have been in utter agony for 6yrs. and the docs can't find what is causing all of my problems and pain.They have dx'd me with fibro, CM, AVM, Spondylosis, Adrenal Insufficiency, T3-T4 compressed fracture, T8-T11 herniated disk with hypertropy, but i know, something is seriously wrong...they are not finding.  
I throb, burn and ache where the AVM is and it feels like someone has their hand back there pulling my hair every once in a while. My head doesn't feel feels strained...and i pray it isn't a problem there, but since i am having memory problems, vision problems spelling backward and personality is making me think again.I also can't lay on the left side where it is. NL said it was in the left cerebullar hemisphere. There also is an "empty sella" there too, from what it says on my records and a chiari malformation too(6.5mm), but they changed it on my records to Tonsilar Ectopia. I was also dx'd with a Mastoid effusion back in '06, but i still don't know what that is and wonder why i was never treated for it.  
Could this be vascular in nature? I was dx'd with Migraine back in '10, but only have a migraine maybe once or twice a month. I did get real angry one day...which, is not me and i yelled out.."Why isn't anyone listening to me or anyone believing me?!" After...or while i was hollering...i had a sharp pain shoot through my head like a bolt of lightening and the pain was excruciating. I had that pain for about 30min. and i had curled up in almost a fetal position and fell asleep. I was praying the whole time. When, i woke up...i still felt the pain, but it felt like it was deep in my head and not strong as it was,
I have had 15 or more MRI's and 2 CT's...BUT no MRA or Angiogram. I haven'I had any venous testing. i have had no lumbar puncture either, but i am afraid of that one, because i know someone who literally died from one.
My symptoms are a long list...and these are some of them. Here are the ones that i can remember and really stand out tje most. Extreme leg pain(especially behind the knee and my Ankles feel shackled often) I can't stand or sit long at all. Standing my legs give way and sitting, i go numb. Oh the TREMORS and the jerking fingers..I feel like, I am in an body constantly shakes inside. It is sometimes visible when it hits my arm.
Just my right ear will ring and does it a lot(tinttenous?) I hear it all the time and it stays with me really, for when it is quiet it gets too loud ringing. I always listen to music or something always. I have involuntary muscle movements and no one has told me where they are originating from and they are scary and aggravating. My fingers have a mind of their own. Pains are all over and they strike like burning(i am talking sheets of fire), itching, aching like flu, cramping(they are everywhere,even in neck and it is like a balled up knot-painful!), the back of the neck feels strained and stiff, lower jaw- i been told the Condyl bone is deteriorating. I get sore muscles often for doing absolutely nothing, My left hand is weaker and sometime, i can barely make a fist or use it because it feels so weird, from being weak. It scares me, because i know there has to be a reason for all of this. The more i use my muscles...the worse they hurt. I hurt in my arm muscle, rubbing my neck knot...ughh. :P
Also, i have some kind of lung infection and have problem with my bladder. I have to take Lasix, because i am retaining fluid some way.I have spasms and have had some severe pain there too.
I have hormone issues(hysterectomy in '99) and was found to be Adrenal insufficient...which has been an absolute nightmare and still taking the Hydrocortisone for it. I have electrical/crawling feelings, blurry/double vision and eye pain, my memory is non-existent and can barely get through a sentence without forgetting.. much more i deal with...ughh like spelling words backward or twice in a row. I have wondered if it could be my medicines, but i don't know what to do..i am in misery, but getting no answers.
I fee like i have already had some kind of bleed because of these things that have happened to me. I was in a car accident in '95. I hit my head on the roof of the car and sustained a minor headache from it, but was going out and when it happened...i just wanted to go home, i felt bad. Could i have a slow bleed all this time. I wonder, because i never had headaches before and ever since the wreck..i have had problems. Had an ACD & F Spinal diskectomy in '06 C5-C6. They called it a ruptured petrusion. I have also had a bone spur removed from my left jaw in '89
I stay numb all the time..on the left side of my face and will have pins/needles even in the corner of my mouth and down my throat. It feels like a dentist has given me literal novacane...that is how numb it feels  I have been paralyzed on the whole left side of my body before. I had just got out of the bath and felt funny, my legs felt like sharped sticks and my feet were like sponges, but had to lay down my heart was beating so fast. I couldn't move my left arm or leg at all. I called 911 and the EMT's said they thought it was an analgesic effect, from the Fentanyl patch that i wearing, but i dis-agree...i feel there is far more wrong here. Also taking, Norco for breakthrough, Gabapentin for nerve damage, lasix, prilosec for ulcer, xanax for spasms/tremors, but i am very cautious with this one. I even break it into small pieces when i take it. I wish, i could flush all of them, i hate having to take them.
IF...u can tell me something that i need to do...tell me. I just want to be well again and me, but can't seem to get there. I do smoke and trying to quit, but is very hard when i this sick. I am stuck in bed on most a daily regimen and i am too young and so much of a working person, to be stuck in bed. I am feeling overwhelmed. Help me please...So worried that i am going to have an anuerysm.  
Ps. Just a couple of questions i had for u. Can vascular problems produce a severe pain like this or do they only produce pain behind an eye? Are sinuses or muscle/tissue/nerve damage more likely...since i was struck with a nerve block, in my thoracic...back in Dec.'06 and my problems seem to skyrocket after that happened. It does sound like my AVM could be having problems though. Could I have Trigeminal neuralgia? I want to say that i do have something going on up there in my head, because i am not me and sometimes, the pain can be unbearable. ehI have read where they do produce these pressure sensations? I am just so sick of being all. I hope this is understandable to u...because i was half asleep when i wrote it and can barely keep my eyes open. I am really scared of this and mighty weary about it. Sorry, this was so long, but i needed to tell u as much as i can about this situation. I believe this could be a serious issue...and i know, i just want someone to point me in the right help me get my life back..if, possible. Thank u...Karen( if, i wrote this already..and it feels like i have already written my name and closed out convo, but that is how my brain is doing. Is it my brain with all the problems that is causing all of this?)
12 Comments Post a Comment
Hey Karen!

Though an AVM could be responsible for a few of the described symptoms, depending on the location, it is unlikely to be responsible for all the symptoms described.
Yes, neuro-muscular causes/ head and neck infection/ inflammation are likely possibilities.
Yes, trigeminal neuralgia could be a likely possibility, though it would be difficult to comment precisely without a detailed clinical evaluation.
I would suggest considering a detailed evaluation by an internist initially and depending on the cause diagnosed/ suspected, it can be managed accordingly or specialist(s) care may be sought.
Hope this is helpful.

Take care!
Your situation sounds complex and you could have multiple things happening.
But, one thing that really stood out to me was that you have tonsillar ectopia aka Chiari. This is when your brain tonsils push down into the top of your spinal cord. This can cause a blockage in your cerebral spinal fluid flow and be very painful. You mention first thing that you feel like your hair is being pulled from the back plus many other Chiari type pain traits. Many, if not all, of your neuro symptoms could fit this. There is a very good forum here on MedHelp that might be worth a look.
Many with Chiari also have empty sella for some reason. This is the area where the pituitary gland sits and it looks empty because it is filled with CSF. That could also be wreaking havoc on your pituitary hormones,

The AVM could be a contributing thing as well. And then the post above about your hydrocortisone doseage could be a good idea too as Cushings (steroid induced) can cause a lot of body pain. TN could be at play too.but it might be more likely that it is atypical if ur not having electric shock

I don't even know where to advise you to start, but have any of these things been ruled in or out by experts?

General neurologists may or may not have experience with all of these things.
Well, I agree Fibro, does describe a lot...but just the spot, where the AVM is feels strange and pulled all the time. The scalp over that spot is real sore and I can't even touch my hair there,because it feels like it has been pulled for a long time, up in a tight rubber band or bow. I do have warm flushing areas at the back of my neck and over my shoulder blades that feels like someone is pouring warm liquid. I am just concerned because I really feel unwell and so tired and have to stay in bed a lot, because my legs have literally lost muscle mass and i am not lazy and just layed around. No, something has put me in the bed and I am fighting to see my life again. It is getting where i can't even lay over on that side, when i am trying to hurts and feels more pulled.
Now, a orthodontic specialist said here recently that my left jaw bone was deteriorating and i have already had a bone spur removed from the left jaw bone back in '88. Also, i have what feels like a little bur or something under my left jaw bone, it feels sore and it's sore when i rub over it. My PCP had a sinus(xray, i think, but can't remember how i found out my septrum is deviated too) I have lost my memory and can't retain short-term at all. Anyway, I had trouble with my sinuses when i was very young. Can i ask what a mastoid effusion is and is it connected with my nose or sinus problems?,  
To me, I am feeling some symptoms like the tremors and they stay with me,  I feel like my chest is vibrating or that I am very cold and can't stop the shivering. I need to know what kind of specialist u would recommend for a person to see, who is having these serious symptoms. oare not the same and when, my skin will burn in sheets. I have knots that come up and didn't know what it would be indictative of.  
Another thing, is my lymph nodes under my right jaw, under both arms have been having trouble with swelling and wonder if it is the lymph nodes in my neck that have been swelling. I had an ultrasound done of my nck and said it was my muscles and tendons swelling...why?
I have had one high Sed rate of 55, but it was when i was at the throes of pain in '08 and have kept pushing forward...and onward. I don't know, if the pain has actually got better,..or i just have adapted and adjusted to the pain. I am a pretty strong person that most people don't give me credit for, since i look so fragile and feminine.
Thank u...and i appreciate any info on what this could be...i have been fighting it since Dec '06...right after my neck surgery(ACD & F Spinal diskectomy of C5-C6). Could it be they have impinged a nerve in there from surgery? Also, for the pain that i was experiencing, i had 3 nerve blocks. I was hit in my Thoracic, by one. Do u think it could be the culprit? Oh.. the doc did go through a T3-T4 compressed fracture area, when he did that particular nerve block and even he was up in my face, after i jumped and asked what happened. He asked me, if my ears were ringing or did i have heavy breathing. I had 3 total, 2 Cervical and 1 Thoracic and even, the nurse questioned why he was going down my Thoracic and not the Cervical. I jumped like i was electrocuted,
There is just so many different possibilities that could explain this and i am so tired of traveling and seeing docs...not to have any answers from all of it. I feel like, i am a ticking time bomb. I sure don't want to be a statistic, if this is the AVM, but my NL hasn't even done an Angiogram and i don't understand why not, since most of my pain seems to be from there and since, i was in a car accident and hit my head, I will still get a goose-egg on top come up..where i was hit back in '95 and it will be sore and hurt too.It hurts to even touch it. Could it even be possible that i have a slow bleed? I did get a headache within 10min., wanted to go back home and rest. I never had it checked out. I am so worried and i am a patient person, but this has gone one for way too long.    
Thanks again and any info would be gladly appreciated. God Bless.
To u other guys, thank u...for trying to help. I do appreciate it. I pray u r doing well today. :)
Dear Doodles, At first my Endocrinologist thought Addisosn's disease because my Cortisol was 1...yup...1. This was May of '12 and when, i went back to see him 3mos which, i thought that i would be dead by then i was suffering so badly...he mentioned it possibly being Cushings', but was disgusted and in so much pain that l went to another Endo to get a second opinion and he saw that my throat was enlarged and done another ultrasound. (i had had one prior by my PCP and he thought it was my muscles and tendons...something like that. My memory is awful.)
Well, to say when it started,.i donno, but i found my vitamin D deficient first and then, the bottom fell out and i just wanted someone to shoot me and put me out of my misery, but i am still here and just making it through each day and i am so sorry to hear of anyone suffering that deadly feeling pain. My heart goes out to what u have felt and i understand.
They put me on Hydrocort.5mg. -I took 3-5mg. in the morning and 1-5mg. in the the beginning, but now i only take the 3-5mg., in the morning. I was suppose to get blood work done, but so many things going on around here that i just put myself on the back burner and it is a possibility i do need to eliminate that one. My mom isn't well and my hubby just had Carpel Tunnel surgery and they repaired his Median nerve on his, we have to do what we can...and i am hanging in there, until i can find the right doc.
God Bless...hang in there and i will keep u in my prayers. :)
I found ur comment to be especially intriguing because ur thinking the way, i do. I do agree and feel that i do have multiple things going and it is ever so hard to figure which one is wreaking so muc havoc on me.
I know, when i was hit by the car could have caused the tonsilar ectopia or CM., but also, wondering @ where i actually hit my head too. Why does it get sore and swell up like a goose-egg? Thinking of a slow bleed...possible? ..or would a slow bleed cause tremors, burning, aching, stinging, etc. etc. Oh, i want to mention a new symptom that i have been feeling. My left bicep will feel like someone just frogged me. It feels like someone just punched me real hard and i can feel the huge knot in my upper bicep..on the outer area. I get knots in my neck too and use moxibustion oil to help...and thank does. I will also have extreme rib pain. It will feel like someone just punched me good or pulled them outward. Accupuncture has really helped me, but only from my special Chinese doc. He is the only one(@ 1 1/2hrs. away), who has really helped me to feel alive again. Once....back when, i could go. I was walking and not crying while doing so, but can't afford it. Ins. won't, i haven't gone back. :(
I feel pressure all the time or the base of the back of my neck and it feels unstable or weak too. When, i go see my Chiro...who is local and he also does Accupressure...he relieves a lot of my headaches, when he presses on the back of my neck. He even mentioned him sending me to see a special one time, who could look further at the CM, because he also was thinking that, but just dropped it. He made me mad a little while back though...and mentioned the word hypochondrias...and that is one thing I DON'T HAVE. It is hard enough, to just be strong, suffer and try to get through this without having to hear someone who is doubting u.
God Bless and i will check back in with all u guys. Thank u ever so much! Karen
The more that i think @ what u said...makes me want to see a doc, who specializes in CM. IT makes perfect sense and here i have...for the past 4 yrs..been looking in the wrong place, but the docs should have figured that out themselves. My NS wrote in my paperwork, back when i had the C5-C6 diskectomy...that i had a small CM and a T3-T4 compressed fracture and that could be where most of my neurological pain is coming from.
Now, i have something going on with my adrenals the same time and ughhh has it been hard. Suffering every which way that i turn and worn out too, but now...maybe i am on the right track. I didn't know an "empty sella" went with the CM and u have been so helpful. I wish, i knew why i hurt on my temples all the time...hmm who knows...maybe something else or connected.
Is surgery the only way to correct it? ohhh...well, if it is...looks like i will be having surgery.
Thank u...and hope this finds u well. God Bless...K
I rec that u check out the Chiari forum that mentioned above. They have am MD list and are a very helpful, supportive and nice group of folks that might help you to look for the right doc. There are many little nuances specific to Chiari that only a Chiari specialist will know.

There are many tests to see if you do indeed have csf obstruction etc.
Good luck,
Ps I can relate to the hormonal stuff very well. I'm a pituitary patient myself  with empty sella too. Not all neuro endos are created equal too. Bleck
Hello again...and I am writing with a new developement. I have been doing something that has been covering up...a very important symptom. I have been running my bed vibrator and it went out last night...i guess, because i use it so much. Well, I am having fascilations in both of my legs...and with the symptom of weakness leading me to believe it could be ALS, but praying it is just benign fascilations. It is worrying me...i am not going to lie @ it, since i have been sick for such a long time and docs are not giving me an answer.
Also, I got to go see my acupuncturists and he brought up that he sees where i had something going on with my C1-C2...and i didn't have to say a thing...but i do have a scerlotic lesion on my C1-C2,..and forgot to mention it b4...and he also said that my digestive was not good and i had trouble with my tail-bone...hmmm. I forgot @ that too, but my tail-bone is growing over to the left of my alignment,, i have many issues and i just pray it is not ALS.
How r u? I hope well. God Bless. :)    
Hey sorry your suffering in this way.  I see your taking some meds that could be casings some symptoms.   The xanax snd gabapentin both have tolerance and discontinuance withdraws.   See my posts I started having some major seuro issues when I stopped and have been housebound ever since.  Loom up benzo withdrawal symptoms.

My posts today...
I recently went off of clonazepam and nortriptyline in jan.  Been off for 5 months.   Now experiencing these symptoms everyday: head pressure, muscle tension in neck and head, heavy head, numbness, feels like fluid in the back of head, all worse when sitting up or if anything touch the head or scalp (hat or pillow etc),dizziness, extreme fatigue, unrestful sleep, muscle weakness, blurry vision, unable to nap at all, no emotions, some anxiety...Im mostly worried about the head pressure and tensioner in the back of my head as it keeps me from living my life, im currently housebound.  Ive had 2 MRIS of the brain and 1 or the cervical spine, heart echo, stress test, ekg, GI tests too.  ALL was negative.  Im so stressed at this point nothing helps.  Ive seen therapists and and they stated this is no typical anxiety. Im in no pain literally however these symptoms are disabiling.  Does anyone have any insight on this at all?  Ive seen 2 neuros and these issues did not start until the abrupt stop of the meds.  Could this be an aneurysm, blood clot, tumor, or some oyher neuro disease that the mris missed?  Please help me.  
Hello...i am sorry for ur pain. I must say that I don't take any muscle relaxers...but have tried, it is just my system is so sensitive that it makes me, have had to rely on the xanax for the burning, cramping, aching muscles. Ur symptoms sound a lot like mine..and docs are saying fibro, but i feel this is progressing and more than that. I have all the symptoms of ALS or MS. It could possibly be Lyme, but tested neg. 4x's and I do know, those spirochettes can hide in u...and hard to detect. I did pull a tic off of me, but it was a sheep tic...ohh gross. :o
  The leg and body pain...will get so bad that it is more like restless body syndrome, instead of just my legs. And, they are more than restless...they burn, ache, cramp and my legs are numb, weak and feel like pieces of wood.(my skin that is, but it goes deep) My ankles sometimes feel like someone is,..or has been holding them tightly and i just can't move them. It feels almost like someone has shackled me and is just leaving them on me....ughh. My knees hurt soo bad...all the time. I can't stand long...or even straighten my legs or they will hurt like bllleeeep!
  I had the neck surgery(ACD & F Spinal diskectomy) and hit in the back with a nerve block...which, i feel either one could be responsible, but the AVM...anomally could be the whole culprit.
I was writing as i read ur story, but i am really right there with u Smiley1007 and feel u...i just wonder if, ur like me...I have an anomally that they found back in '08, but say i was probably born with it and not to worrt, but...Why does it hurt then is what i want to know? I feel, my hair is being pulled or has been pulled, because my scalp will get so sore and can't even touch it. It also hurts, when I lay over on the left side, where it, that is not right. I pray u keep fighting to find the answers. DOn't give up...because we just have to find the right who cares of what we are telling them is going on. If, u find the right one...let me know...i might look into seeing one..who can help me too.
I will keep u in my prayers...all of u. God Bless always. O:)      
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