Soft spot and fullness/pressure post PFD.

[flowerchild2409]

Hello All;

I had PFD surgery along with a C-1 laminectomy and bovine dura patch about 3 months ago (July 2010).

Had two complications post surgery; pseudomengocele and chemical menigitis. Still weaning off of the dexamethasome and feels like the menigitis symptoms are pretty much gone at this point but last MRI stilled showed a small amount of fliud in the soft tissue. Down about 75% of what it was right after the surgery. At any rate with these two complications and a couple of post-op hospital admits I am feeling somewhat  better but had some questions about continued head pain/ headaches and this "soft spot".

I seem to have these sort of soft tender spot in the back of my head around where I would imagine the c-1 was done and the dura patch might be. It gets tender when I move my head or neck and leads to a sensation of fullness and pressure in the back of my head that radiates into my ears.It feels different then the pressure I would get prior to surgery.  My NS said it is just my body healing.....still some swelling and inflammation.  He cleared me to begin some gentle exercise of walking, swimming, indoor riding ( I am a triathlete) and the activity seems to flare things up.

So I was wondering if anyone else has this soft spot and fullness/pressure that is triggered by head and /or neck movement? I do find muscle relaxers, heat, celebrex and massage does help but cannot image how muscle issues could cause fullness and pressure. Any feedback is appreciated!  Thanks!

[jorlex137]

Sadly we learn that the ns often just does the cutting and then is done.  I think it's important to have a good nl for folllw up care, cause you often won't get much of that from ns.  
I had the soft spots you are talking about for quit a while and they still pop up and it's been 10 months since surgery.  
I called about 2 months ago, being 8 months post op, about running and was advised not to run but walk for now, at least till 1 year mark.  Was told to get good shock resistance shoes for walking!
Thinking maybe your ns is giving you the go ahead a bit too soon!

[*Stormy*]

HI

I was absolutely amazed that after all the changes that went on with my body and all the months I waited to get a dx....that after the surgery, it felt like everyone was just like" see you later, have a nice life!" I was left a crippled form of my former self. I was just like you, I ran, went to the gym, was active with my kids...I was nowhere near what I used to be and yet it seemed like there was absolutely no follow up care after surgery. I only went to PT b/c I told my NS I needed to do something, I went after 6 weeks and went at it way too hard which caused a vicious cycle of pain. Once I figured that out, I stopped and started badgering my GP some more. I kept saying to her that no one in their right mind would just sit down and let their life pass them by, I wanted to get myself back to a close as before as I can!!! So that is how I ended up in the lap of the Physiatrist (rehab dr)...Unfortunately, I went there today and the gait assessment lab was closed so I could only have half my appt., I was super disappointed b/c I had waited so long for someone to tell me why I walk the way I do (and why so much pain?) But one thing I can tell you is that these people really care and they UNDERSTAND!! Which is so huge...and I can feel that they are going to do their best to help me. But, I have to wait till the end of October for the gait assessment :(

So, rehab is good, but don't overdo it or do it too quickly. I was told that the best thing is deep water walking (not swimming b/c of the neck strain) and that I was to do it every day for at least 10 mins but no more than 20. Like she told me, I am not going to see immediate results but will be building a "foundation". It makes sense to me but I still have to figure out how I am going to manage that with 3 kids!!! She also recommend setting aside 20 mins a day for deep breathing or meditating. She told me if you master that it is amazing how much it can help with pain...I'm a little skeptical...but at this point I'm willing to try anything (and 20 mins to myself can't hurt). She also told me to avoid the mistake of overdoing it on the good days as this just starts the cycle all over again and you get no where. That one I am guilty of and it's hard to change!
Anyhow, I hope some of this info helps you too. Keep pushing you Dr until you get where you need to be, don't give up!
Carolyn

[flowerchild2409]

cmoeller; Thank you soooo very much for your response!!  It really
helps to ease my concerns a bit.

I have had a couple of MRI's w/ and w/o contrast since my surgery and all looks good. Like I mentioned the Pseudomeningocele is down at least 75% if not more and I am weaning off of the dexamethasone..I just keep wondering if it is a small leak but my NS says I would have much more pain and headaches would be much worse etc. I don't know...

I think part of the issue is that my NS set up unrealistic expectations for me - even with my set backs of pseudo. and chemical menigitis he is saying it is okay to do long walks, swim and bike. Initally he told me I could be back to running at 3 months!!!  So, as an active and healthy person I am out there doing what he says I can do but I think it is too soon. My body knows better then him... I think I need to re-assess and back down on my exercise and expectations.

I hear you about Rehab. My NS says they don't refer to PT but I will push for it in my next visit next month. I wonder how much of this is muscular as well.

Please let me know how rehab goes for you and if it helps with your symptoms. I am very curious to hear. Considering our neck muscles are pretty much ripped to the side during this surgery I would think that rehab would be a given?

Again, thanks for sharing your experience and best wishes to you for continued healing!

[*Stormy*]

Hello!

Post op I did have this tender area right at the top of my scar, I figured that it was so tender b/c it was probably the area that was pulled on the most during the surgery. You are still very early post op, I found that area bothered me almost to the 6 month point and I kept getting this little bump that would rise and fall. Finally, it healed and the tenderness went away.

As for the fullness and pressure, I had that badly too for the first 3 months and then it eased up a little but would come back now and then. Even now, I still get that pressure for days at a time, I figure I must have done to much and it came back to slap me in the face. I am 9 months post op now, I do keep seeing improvements and longer periods of time inbetween the pressure feelings. When mine starts, it is exactly the way you describe, I feel it tighten at the back of my head and it radiates to the front. Unfortunately, you have to give it more time and than when you have reached the 6 month point or so, you have to work on recovery. If you keep having issues, you do need to keep bugging your NS until they send you to a professional who will aid you in rehabilitation. I finally got there and have my first assessment tomorrow.

I pray things continue to improve!!

Carolyn