5 months post op concern

[Tharris85]

Hello everyone.. I had decompression surgery on May 31rst of this year and have felt great except for a few occupational headaches until yesterday. I had been laying on the couch and when I stood up I had horrible pressure in my head and pain behind my right eye. I have been in bead since and the pressure and pain in my eye is terrible. My ears keep popping as well and I haven't been able to eat much because I feel nauseous. Also my neck and back are stiff and hurt to move but that's probably from being in bed for 2 days. Lastly I can hear like a swishing/clicking noise in my head. What is this?!?

[Tharris85]

So I just left my family dr and he said that my last cervical MRI showed I had severe arthritis in my C1-C7 and deteareation and that is prob what is causing the pain. He scheduled me for a brain MRI to check everything. My ns nurse called and said she didn't think it had anything to do with my decompression surgery because that was ( months ago and I should be completely healed?!? Ugh!!

[selmaS]

  It could be a CSF leak and a  pseudomeningocele  which is a sac that fills with the CSF....

  Call ur NS and keep calling until u get a call back...he has an emergency number... Call  and let us know how it goes....

  and rest as much as u can ((hugs))

[Tharris85]

I called my ns today but he never called me back. My headache was better today but my neck hurts really bad today and I couldn't go very long today without resting my head. It's like my neck cannot hold my head up. Also my fiancé started to rub my shoulders and freaked out because my neck right where my neck connects to my back is really swollen there and it looks like I have a huge hump but its squishy. He pressed on it a little bit and now I feel really sick to my stomach. He rubbed my shoulders sat and he swears it wasn't there but you can't miss it its huge. What is it?

[Viva001]

I'm also concerned that you were dismissed so early.  I was scheduled for 6 wk, 6 mo., 1 yr, & 2 yr follow ups.  More if necessary.

My DH, for another brain condition, is followed up yearly.

From my experience, NS's are very involved.

[selmaS]

  Good, I really think that is good to at least rule out....I was around the same age, so not too odd, for someone with Chiari, tethered cord, EDS and a few others....lol...but I didn't get my chiari dx until I was 48....MRI's were not around when I was younger and then took a while until they were used as they were too costly at first.....

Keep us posted on what u find out <3

[Tharris85]

I thought it was strange too but his exact words were I don't need to see you anymore everything seems to be going well. They said it is from normal wear and test but I am only 26.. I am going to call my ns tomorrow and see what he says. I also think I'm going to go to the dr and get checked for eds.

[selmaS]

  I do  not understand ur Dr releasing u from his care so soon......

As Iris said get a flexion, and extension xray.....

The degenerative disk disease is normal wear and tear that everyone gats as they age and not an actual disease, but some of us r prone to get symptoms sooner as a result of EDS...I was dx'd at age 27.. yrs b4 my chiari and EDS dx....

[Tharris85]

Ty.. Today is day 3 if being in bed and it feels like its better until I get up and then the pressure comes back. It's just very discouraging. I thought I was over this and I felt so much better.

[irislita]

Stay calm i know its hard.i had flexion and extension xrays where u should see it...simetimes u need another specific scan.u should call ur ns tomorrow.maybe its really overdoing,but if symptoms persist go and get ur answers.hugs

[Tharris85]

Is that what you have? How do they check for it and what exactly is it and how do they fix it? Hunks everyone for your comments I am so frustrated and with it being the weekend I don't have anyone to ask.

[irislita]

Get checked for craniocervical instability please...ur symptoms sound to similar too me and chiping away from 2vertebras can cause instability especially for those with eds

[Tharris85]

Yes I had an MRI and he said everything looked good. I was not checked for eds but was checked for the tethered cord and they said I did not have that. They did say I had some disk degenerative disease or something. They did remove half of my first and second vertebrae as well.

[selmaS]

  Well u still could be doing too much,....stress can cause symptoms to flare....full time work and school can be stressful...most NS's see Chiarians post op at 6 weeks and 6 months and then 1 yr post op...not sure y urs is not planning to see u...did u have a MRI post op?

Were u checked for EDS, or tethered cord?

[Tharris85]

I do not have any more check ups. Only had 1 6 week check up and he said he didn't need to see me anymore. I work full time but mostly sitting down there and I go to school but nothing strenuous. I should also mention its worse when standing or sitting up. It helps to lay down. It takes some of the pressure off. My neck has been popping a lot lately but that is pretty normal since surgery. My head just feels so heavy and my ears feel like there going to burst.

[selmaS]

  Hi....it is hard to  determine what might be going on...do u have a 6 month post op visit with ur NS?

The stiff neck and back could be from being in bed....if that is new and since u r in bed....

I would have to ask what u do on a daily basis, it could be something u r doing ...ur body may be trying to tell u it is too much.....