Feel like I got hit by a linebacker square in my back........

[Guest Julia59]

Not really a nice way to start out the New Year-----but that's just the way it is.

Since I have been hanging low lately with a POTS crash of sorts I thought I might explain a little more of what is going on.

Do you remember when you were a kid---maybe playing a little rough with your brothers---and then you get the wind knocked out of you. Well this has been me for a while now. If I attempt to go out and run an errand---or spend more then 10 minutes in a store I feel like the wind is knocked out of me.

The pain is unbelievable in my upper back and lower head. I can hear all my little bones in the cranial/cervical junction snapping/cracking---even the tiny bones in my ears---then my hearing buzzes in and out---and my vision gets foggy---and I have had a lot more black floaties.

The back of my head and ears hurt so much----and as I explained before I have nuerosurgeons with differing opinions. this has left me in a big state of confusion. My instincts tell my my spinal issues are getting worse. There seems to be a sharp increase in symptoms since the dental work I had done---and I had at least 6 appointments in a row. On one of my more recent MRI's it said I had several bulging or herniated disks all the way up and down my cervical spine---plus I have the congenital stenosis---and a couple more herniated disks in T1---and T2---and more in my lumbar---although my lumbar is sore---it's not the major source of my pain. In fact i'm more worried about the symptoms i'm having---as I feel more wiped out then ever, and with very little exertion. This is not my usual POTS stuff---it's much more crippling.

I am able to get out of bed and bathe, and do small things around the house, but it takes everything I have, and there is virtually no social life as venturing out is so extreme for me now.

My brother who was diagnosed with probable colon cancer is having surgery on Thursday and he wanted all of us to go and see him play in his band---he plays the base, but also plays guitar. There was a big New Years bash at a place up in Michigan. There would be no way I could handle the noise and smoke---it would send me straigt to bed for quite awhile. I could go in the past even with my POTS, but I always paid for it, but there is just no way now---and I feel so bad because he does not know when he can play out again after the surgery.

Tonight I have so much pain in my upper back it has spread to my chest---I get this often and it's disturbing because I have issues with cholesterol---borderline---total 195----but my HDL is only 27---but usually hovers around thirty somthing, but when I lowered my numbers---the triclycerides and LDL---the HDL went down with it. I don't really get freaked out. It's just something I think about sometimes as I would never know if the pain in my chest is from my heart or the upper spine ---and referred pain to the chest.

I had a stress echo two years ago---maybe a year and a half---I can't remember----the cardiologist said it looked fine---NORMAL----and they have seen several readings from my cardiac loop recorder---but it's not a 12 lead, so I don't think it would really tell them much other then the electrical activity---because they are looking for arrhythmias.

I'm still having a lot of vibration in my legs along with the numbness and weakness---which makes it difficult to walk at times---especially if I try to walk around a store. The lights bother me a LOT---it amazes me how much of a difference there is when i'm not in such a brightly lit area. I still feel bad---but the bright lights are crippling. Another thing that worries me is it is hard to breathe when I turn my head in different positions--mostly left.

When I went to the ER on Dr. Grubb's and Bevs advice due to the high white blood count I was told it became elevated due to straining my speen from dry heaves----I'll get this sometimes with the hyper adrengic attacks---and terrible shaking. The doc said that can elevate my white blood count. It was back to normal when they did another CBC. But I still feel like you know what---I can't figure out the source as I still have abdominal discomfort---but I just figure that's part of the POTS.

I have all this going on---and I am very worried about my brother and his family. I know that colon cancer is one of the cancers that have a much better outlook---and the Doctor seems optimistic---so we are all hanging onto that.

Sorry to go on folks, and bring in the new year this way----but i'm still trying to figure all this stuff out. MY PCP left her practice, and now once again I have to find another. I called one PCP---and it's like a lotto of sorts. you have to be the first of eight callers on the 1st of the month---and then you get an appointment the following month. And I still do not have a good neurologist. I still have my appointments at the Cleveland Clinic in March---I moved them up as the NSG doesn't take this very serious, and the other is with a rheumatologist---as the NSG at the CC said I have fibromyalgia---and CFS.

I should go because my head keeps jerking and then locking---and it's painful to unlock.

Take care-------------just venting some of this out of me---it seems to help my mind calm a bit.

Thanks for dealing with my babbling.

Julie :0)

[Gena]

Julia,

I am so very sorry for all the pain and symptoms you are dealing with. You are a strong willed lady! You are right not to push yourself. Do everything you can to take care of yourself. It definitely sounds like you need to talk to a neurologist again to get to the bottom of what's going on.

Well I just wanted to let you know you're in my thoughts and prayers. I hope your brother's surgery goes well and that he makes a full recovery. I'm sending you many great big hugs. Hope this year gets better for you soon.

Hugs,

Gena

[mom4cem]

Julia,

Sorry you are feeling so bad. I hope you can find a pcp, someone to help hold this all together for you. You are a very strong person and no doubt will get through this also.

I hope you feel better soon.

[morgan617]

Sorry I can't help Julia, I haven't been out or to a store since August. I go out for dr.'s appts and that's it.

My neck cracks all the time too and my tharacic spine is very painful, but since my cardiac has looked okay except for a lot of arrythmias, I just don't worry about it.

My MRI showed bulging discs and stuff too, but I guess I just get used to that like everything else and I haven't been able to turn my head to the right more than a few degrees for at least ten years.

I guess I just get used to this stuff and then try to ignore it. My humming left leg is just another thing that won't kill me, it will just bug me. I have a great deal of the same symptoms you do, it's one of the reasons I don't post very much anymore. Can't afford a laptop. So I don't know how to help you, because I just live with my stuff and rarely obsess about it. It just is, and I don't have any doctors that understand any of this illness.

My pcp is great, but he is the first one to admit he knows next to nothing, the neuro I saw said I was crazy, as have just about every other doctor I've seen. So I'm either crazy or beyond their help. So I deal....I assume it's their ignorance, but it really doesn't make any difference, it still boils down to no one knows, so live with it...

Hope you feel better soon...morgan

[gwen]

Julia, I am so sorry the year is starting off like this! I do not have the same problems you have so I'm sure I can't completely comprehend. I worked for a chiro out of college for about 3 years and we've remained good friends. He is very "normal". My husband has had back surgeries due to work related injuries so I know how if your back isn't working the rest of you ain't happy either. Have you seen a neuroorthopedist. Neuro being the important part. The neuros are much mmore refined with their treatment. They dont' just cut and sew back up as we have found out. I know we've all had our fill of drs. but it might be something else to think about. Do you have one of those soft cervical collars like whiplash victims wear? You can get them at Walgreens. They are a great help in making your neck stay in position and not aggravate discs and nerves. I have one myself for when things are really rotten and am amazed at how much support they give my neck. I feel like my head will stay on and not roll off. sometimes I wear it if I feel like a migraine is coming on. Oh, I do wish I could help you some how. Please rest and get some relief. your brother will understand. :-)

[dizzygirl]

Hi julie.. so sorry that you are feeling so cruddy! I wish I had some words of wisdom for you...

I totally understadn the back of the head and ears hurting...my neck gets going to the point that the back of my head feels like it is going to explode.. and the pressure UGH! .. behind my ears will hurt like the dickens..and there is alot of pressure in the old ears too.. I sometimes will find myself holding my ears and my head and rocking back and forth.. dont ask me why i do this.. but I do...

I hope that you can find something to help you feel better soon

HUGS

Linda

[Guest CyberPixie]

Now I get all that but I have EDS and it's put down to that.

[michiganjan]

OH Geeze, Julie!

This is too much--seems like you have had more than enough lately. However, it will pass. You will begin to feel better soon.

[Guest Julia59]

Thanks everyone for your replies and support.

I do have two neurosurgeons who say I need surgery. One said I have myelopathy due to congenital cervical spine stenosis------the other is more concerned with the cranial/cervical instability.

The first one wants to do a full laminectomy from C3 to c7---and this will require the whole area to be fused.

Fusing that area will work the other areas above and below it much harder---ad the cervical/cranial junction is already unstable---and no doubt it will get worse with the area just below it fused. This leaves me in a dilemma as you can imagine, especially since I got the opinions of two other NSGs who think my upper spine issues play not much of a role in any of this, and they think there is nothing terribly urgent of serious------------which confuses me even further--------------.

I have a hard cervical collar, and cervico/thoracic vest/collar combo---and a soft collar. I wear the soft one at night for sleep, and the hard one in the car to protect my unstable neck from further damage should a fender bender happen. Further damage could me permanant damage to the spinal cord. There's not much room for error--either way.

I try not to wear the hard collar too much to prevent atrophy in the muscles of my neck. It's hard because it's hard to hold my head up---and it seems to keep progressing. Meanwhile POTS symptoms are getting worse. My legs are not too bad right now----but I haven't challanged them by going out anywhere. Tonight we'll see as I will attempt to go to the grocery store with my husband----this is always a good test.

Today I am trying to find a new PCP and Gyno doc. One PCP actually had a lottery of sorts---meaning you had to be the first of eight callers on the first day of the month to get an appointment as a new patient. How bizarre is that. I tried---but of course I didn't win the lottery today----DARN. I'm trying to get in with a new physician voer a MUO family physicians---we'll see what heppens' there. Meanwhile I have appointments set up with Dr. Ken Davis the psychologist to help me sort all this out, and help with the relentless anxiety I have from all the stress from the health issues and personal issues--like my brothers surgery for colon cancer.

I'm on a cancellation list----and tomorrow I can get in at 2:30----and i'll still get to keep the scheduled appointments. Dr. Davis sees a lot of Dr. Grubb's patients----he's good at what he does, and he has never made me feel like my problems aren't real---he has taken all this very seriously. I told him I felt like I was going to lose it-----the daily pain---worsening of symptoms----Docs disagreeing with eachother---the Cleveland Clinic passing me from one doc to the other----my Brother Joe's probable colon cancer---let's pray the doc is wrong. He will have his surgery Thursday at 11:00am.

My husband is stressed working two job's and then having to help around the house---and grocery shop ect. I do my best to help---and a lot of the time I do things I shouldn't because I just can't do it to him-----he's got too much on his plate now.

Well ----I should stop my babbling----and let you go---thanks again for such warm thoughts and support.

Take Care,

Julie :0)

[MightyMouse]

I hope stuff settles down for you soon and the pain abates. Nina

[gwen]

You are not rambling you just have a full plate. It's bad enough to feel bad but then to have all the other streses, well we all know where you are coming from. I don't have near the physical problems you do but I am inspired by your persistance. I've never heard of a lottery, and I can just imagine that Dr.s ego. Stay the course! :-)

[d4g7]

What's a 'linebacker'?

[Guest Julia59]

A linebacker is a football player---A BIG ONE---------------That's about all I know---i'm not that familiar with football----I try to be--------but I still don't understand it.......

Here is one defination I found that might help explain---this is once type of linebacker;

Strongside linebacker

The strongside linebacker is often nicknamed "Sam" for purposes of calling a blitz. Since the strong side of the offensive team is the side on which the tight end lines up, the strongside linebacker usually lines up across from the tight end. Often the strongside linebacker will be called upon to tackle the running back on a play, because the back will be following the tight end's block. He is most often the linebacker called to blitz the defense, allowing the weakside linebacker to drop into pass coverage.

Now I have "George" which is what I named my "hyper adrengic attacks"

And it looks like I have "SAM"------who is the "linebacker" when my back feels like it's ben hit hard---and i'm hobbling around that day..........LOL--------------------

Julie :0)

[MightyMouse]

Julie, if you don't mind, I'll add that the term linebacker is for American football

--everywhere else in the world, other than North America, football refers to soccer, which is non-contact (or is "supposed" to be). The linebacker's job is to make sure that opposing team members don't continue downfield past them. The typically come charging forward after the ball is in play, and are prototypically HUGE, HULKING specimens of humanity. Being hit by one, I would guess, feels like being run into a brick wall at top speed.

As for if I have ever felt as you describe, yes. Prior to my fusion, your description exactly fits what I woke up with morning after morning in the middle and upper portions of my back. I still wake up sometimes feeling that way, but I have multiple herniations from the top of the cervical spine to the middle of the thoracic. I usually tell Teri that I was hit by a tractor-trailure truck in the middle of the night and while unconscious, placed back in bed.

Like you, I also have tons of pops, snaps, crunching noises from my upper back, shoulders and neck. I think it's an EDS thing for me--as I'm getting older, my body's joints are less forgiving. Recently, my toes have been dislocating--both great toes pop in and out at least once a day, usually when I'm getting in/out of bed and not wearing shoes. The shoes stabilize my foot, and I have custom orthotics which were worth every penny of my out of pocket expense of a few hundred dollars.

Nina